Our Special Kids

[stass]

So I decided to start a public journal to talk about my own experience with a son with special needs. But most everyone who visited my journal had kids with special needs too so I said hey lets get together in our own journal! (that way I won't have to do all the work :aok: )

Saxon, almost 5, was dxed with ASD (autism spectrum disorder) a year ago. (though it had been suspected way before) He is a great kid with very high acedemic skills but poor social skills.

We are currently dealing with some anxiety issues around classmates having outbursts. He is constantly trying to anticipate when a kid will cry. So he is missing out on what is going on in class. :( I spoke with our behavioral pediatrician tonight and he wants us to try a social story about it and a way for Saxon to get out of the situation (Leave while they are crying). And give a reward after it happens. We'll give it a try . :dunno:

So who else is going to join me???

[Brandi]

Hi! I'll join in. I have a daughter, Heather (2 1/2), with special needs - she has Tuberous Sclerosis. Right now, she is doing great. We have been through OT, ST, and DT with her, but she is currently not receiving any therapy. She will be attending the early childhood school that is for "at-risk" and "delayed" kids next year. She was on anti-seizure medication for Infantile Spasms, but is currently off! WOOO! Although, I believe she has been having some minor seizures since then. I've talked with her doctors and we aren't too concerned at the moment, but are keeping an eye on her.

My son Carter (almost 5) does not have Tuberous Sclerosis, but we have been seeing a counselor to try to work through some of his issues. The last time we saw her she was leaning more towards ADHD, but also possibly some anxiety issues. Now, she has been leaning more towards the anxiety and not the ADHD. My mom has a lot of anxiety issues, so that makes some sense to me. Things have been much much MUCH better in the last month. We do not allow him to watch any more tv or play on the computer at all during the week. And on the weekend, he only gets a little bit. This has made a huge difference. He is playing better with his sister, is doing more imaginative play, and is not so grumpy all of the time! He was really grumpy a whole lot of the time before. And he was constantly asking if he could watch a show! Now, he knows there is no tv and he doesn't even ask! It's wonderful. We are also reading some books. The one that I really like right now is called "How to Talk So Kids Will Listen & Listen So Kids Will Talk" by Adele Faber and Elaine Mazlish. I really really like it so far. It seems to me to be extremely obvious, BUT it's hard to do. It's basically talking to kids in a way that respects them and helps them to understand their feelings. I'm only on something like chapter 3, so I haven't gone very far in it. But I really like it. I think it would be an excellent read for every parent!

[stass]

:wavey:

Glad to hear things are going so well! Interesting that we are both dealing with anxiety issues. :scratchch

[Kate]

I am here... Cameron is 5 years old and has been diagnosed with SID and we are working on getting the ADHD diagnoses. Right now he is in ST, OT and PT. His speech is delayed quite a bit, but getting better every day and he has low muscle tone through out his core and than he is still toe walking, we can't get his heel cords to loosen up at all.

Other than that he is doing great. He is going to an integrated preschool 4 days a week and next year will start regular kindergarten. The school system that we are in now is great, they actually added on to Cameron's services and have been really proactive in trying to help him.

[Kaybee711]

Hi everyone! My son is Sam and he is 9.5 weeks. He was born with a microcolon of his large intestine and a bladder with low muscle tone. Right now he has an ileostomy http://en.wikipedia.org/wiki/Ileostomy and we have to catheterize him three times a day to get rid of the residual urine he leaves in his bladder. We are working with a tentative diagnosis of Berdon's syndrome. They are not quick to slap this diagnosis on Sam because usually children die of this within one year but if Sam does have it he has the base case-scenario in that his whole small intestines work and that's what you need to survive. He is growing great without using his large intestines. At the beginning of April we go in to see if we can cath him less and if they will be able to reconnect his small and large intestines. Even if they cannot there are a couple of options so that he will not have to wear the ostomy bag his whole life.

[AmyP]

Hi all! Sarah is 2 and has no diagnosis, although I strongly suspect SID. She is delayed in all areas except for social skills. She is currently receiving OT, PT (although not much anymore), and SI (special instruction). She refuses to eat most foods that require chewing, although she happily eats pasta (we go through an insane amount of Spaghetti-o's and Chef Boyardee), and she'll eat diced fruits if I mix them with baby cereal. She really likes my homemade spaghetti, and that's the only regular meal I make that she's eaten. She's getting to the point where she doesn't want baby food anymore, but she can't handle table food yet so we're in a tight spot. She's about 12-15 months in most of her skills.

She recently mastered putting objects into a container, which is a battle we've been fighting since we started OT last April. Now we are working on marking on paper with crayons/markers/whatever, stacking blocks (this is "emerging", she gets the idea but needs a lot of work on precision), and her pincer grasp. She uses two or three fingers with her thumb to pick up small objects and we need her to be using either her pointer finger and her thumb or her middle finger and her thumb. Either one is fine with her OT.

She finally said her first word last week ("ki-ca" for kitty cat), and she says "yay" and claps when we cheer for her. She also is showing interest in the potty, which we're gently encouraging (for once she's slightly advanced!). She's nowhere near ready to train yet, but she'll happily sit on the potty and goes fairly often. Poor kid is too short to get up there by herself, even with a stool.

We are starting therapeutic horseback riding lessons in early April and a music and movement class (like a Gymboree class, but run by EI) in mid to late April. She was in the music and movement class last fall, but she really hated it and freaked out so much I pulled her out of it.

As far as stats go, she's 35 inches tall and 29 lbs., 75th percentile for both. This is a pretty big jump on the charts for her. I guess Spaghetti-O's are the Os that help you grow. :lol:

[stass]

Check us out! We have a group! :aok:

[Bonnie]

I'm here too, but I can't get any time to write! :lol: My 2nd daughter, Courtney, turned 3 in January. She was born with a cleft palate, repaired at 10 months. She also has one ear that has a condition called microtia, small ear, it is not formed correctly and has no opening. It will be repaired cosmetically at age 6 (four surgeries). She has some hearing in that ear, suggesting there is structure under there, but we don't know. She also has microcephaly, which means small head. Her head was on the growth chart for about a month, and never got back up there. Courtney was in early intervention from about birth. Her only significant and obvious delay is in expressive speech. She understands everything and she does talk a lot, but she is missing so many speech sounds that it is very hard to understand her. She is starting to speak in short 2 to 3 word sentences, but they are very very hard to understand. She does a teeny bit of sign, because she really likes to talk, though she has almost no consonant sounds.

She is now in the school system and goes to special ed preschool 4 days a week and a mainstream nursery school 2 mornings (she has an overlapping day.) She also gets some speech therapy at Children's Hospital through our insurance. She is doing great! When she was a little baby and her head was not growing, we were told some terrible things about the possible future... none of that has occurred. Courtney is a very typical 3 year old. She is really an amazing little kid. :)

She really has no true diagnosis. She likely has some kind of syndrome, but she does not fit in the spectrum they initially thought she was in, which is hemifacial microsomia. She has some characteristics that fit: the cleft palate w/o an accompanying cleft lip which is a rare combo, the small ear, but she is totally symmetrical in her face so that doesn't fit, and the microcephaly is not a part of that syndrome. She is a medical mystery. :lol:

[Brandi]

We are a group! COOL! I just filled out paperwork that our OT sent us - this was Heather's OT, but the paperwork was for Carter. I think he has some issues in the sensory department, but nothing huge. We shall see.

[Girlo]

I have a dilemma that I'm wondering how to approach, if at all. I'm hoping you ladies might be able to offer some advice/suggestions. :)

There is a woman in my MOM's club whose daughter will be 3 in April. She is quite obviously delayed in some areas (speech being the obvious one). Several of us suspect Autism (there are lots of teachers in our group who now stay home with their kids). Lily will not look at you, no matter how you try to entice her, she has habitual repetitive behaviour (will walk back and forth with a stick for hours...daily), screams when touched, no interaction whatsoever with other kids her age, eating issues, etc. These are just the things I observed during a birthday party for another child. She spent most of the time playing alone in the birthday boy's room. The rest of the time, she was pacing the hallway holding a fork (and went ballistic when I lightly grabbed her arm to take it) and stepping over the other kids there like they didn't exist.

The problem is that her mother is in complete denial that there might be something wrong. This is their only child and there won't be any more. She's not worried about the lack of speech because she makes noises.....however, the noises she makes are just random grunts. Not trying to say words or anything coherent. As for the eating issues (she won't eat anything but a very narrow range of foods) - she's just being picky. As for the repetition - she's just a unique toddler. As for the complete lack of interaction with other kids - she just likes playing with other stuff.
To all of us, it's painfully obvious that Lily needs some intervention and some help. How (or should) can we tell S that her daughter might be more than just a little delayed and she should have her evaluated? On the one hand, is it any of our business? OTOH, shouldn't we - as her friends - help her? They're a Navy family, so there's no family or anything anywhere close.

What do you all think?

[Nadine]

I'm here, too.
Since this is a public journal I don't want to use my kids' names in here.

DS is 8.5 years old and diagnosed with ADHD (on a scale from 1-10 where 10 is the most severe case, he is a 8/9). He is treated with meds which used to help a lot but now the effetcs have lessened. It still is very difficult to cope with the issues he has at times. He was also diagnosed with SID. He goes to swimming lessons 2x a week, special ed lessons to help him cope with school etc 1x a week and we exercise with him on a daily basis.

We have (had) our ups and downs and are recovering from a down period right now. He has been stealing and skipping lessons whenever he felt like it. We are working together very closely with his school and special ed teacher and have to change and adjust our approach as we go.

[Nadine]

Shannon - I have no idea what I'd do in your situation, sorry.

[AmyP]

Shannon I don't know what to tell you. It's a REALLY sensitive topic. It does sound like at the very least she has some delays and sensory issues. Is anyone in the club close enough to her to try to talk her into at least getting her speech evaluated? That seems like the most obvious place to start. Sarah's 2 and should be putting two words together (she's not), so her daughter is definitely delayed in that area. Hopefully whoever evaluates her for speech will make her aware of the other problem areas.

[AmyP]

I wanted to report in here that Sarah had special instruction this morning and she did GREAT!!!

We worked on shape puzzles (just a puzzle with a square, a circle, and a triangle). Sarah put the circle in place easily and worked really hard on the triangle. She eventually got it in and would get better and better at it as we practiced. This skill is 16-18 months, which is big considering most of hers are 12-15 months. She said "cat" for the teacher, so that was great. She's also getting closer to using her pincer grasp. She actually used it a couple times, so that was great.

[stass]

:wavey:All!

My special kid wants a turn on the computer so I'll write later. :) This is cool!

[Kate]

Shannon, That is such a hard place to be in. Would it be possible for someone to just bring up casually about having her tested and that there are a lot of services out there that could help her with her speech and than just go from there. Also, at age three she would be part of the public school system and have preschool at no cost to the parents if the daughter is on an IEP. There is one mom in from Cameron's class that said she wasn't really worried about her daughter's speech, she is only a tiny bit behind, but the no cost preschool is what pushed her to have her daughter tested.... Just a thought....

[Shel]

I'll come follow along since my children are not as special needs as others. Just thought I could be a sounding board for some different things.

My second oldest son is ADD, but is non-medicated, thank goodness. We've worked with diet, vitamin supplements and behavior modification that so far has been working well (he's not a very advanced case, so that helps) He's been struggling with school this year, and had some behavior/attitude issues. We're going to try homeschooling again next year, which will also give him more time here with me (he just moved to his dad's per our divorce agreement) I think dad has let him slide on his supplements as well, so we need to kick that back in gear.

And poor Owen failed his speech therapy evaluation today, so we'll see where that takes us now.

[stass]

:clap: Sarah!

Shel how old is Owen? What made him fail it? eta I followed your link so I found the answers to my own questions. :)

Shannon I have had many occasions when I started to think I should tell someone about suspicions of Autism but then always decide against it. Though I don't know these people as well as you seem to know your friend. Truthfully the earlier they get help the better. Weird that her ped isn't telling her to get help.:scratchch

[stass]

I taped a MTV thing , REal Life-I have Autism. I thought it would be an uplifting story about how great kids with Autism are doing but the part I watched was too hard to watch. I really hope that isn't how Saxon ends up. I have much higher expectations for him than the part of that show I saw. (maybe there was a hopeful part but the segment I saw was :( )

Saxon is doing great and I think he is going to keep improving! But stuff like that can bring you down.

On a better note I finished reading Born on a Blue Day about an Autistic Savant. Daniel Tammet. His story was much more encouraging to me. :nod:

[Girlo]

Stacy - Her ped is the one who told her (at her 2 year appt) that because she's making some noises, there's nothing to worry about with the lack of speech. The problem is (at almost 3 years) that the noises don't resemble anything close to words - just random humming and grunting. We're all waiting anxiously to hear what he says at her 3 year appt coming up in a month or so.

Thanks for the well wishes and wise words. :hug99: I have a friend whose child is Autistic and I've learned a lot from her. So, when I see those signs in other kids, it really stands out and I want them to get the help that's out there! It's just such a sensitive subject. Everyone wants to hear how outstanding and brilliant their child is.....but the other way around is devastating.

[Brandi]

Shannon - I like what others have said about the speech thing. But, if her ped. is telling her not to worry, than that's hard.

What about writing her an anonymous letter? Is that too crazy? Maybe it could give her some websites about autism. I guess that probably isn't a great idea either. She'll go around forever wondering which of her friends did it. I don't know. Ultimately, she will start school and someone will say something. But the sooner she gets help, the better. I have a friend like this. Her son had a major speech problem, but she kept saying that she didn't speak until she was a bit older and so she isn't worried. Well, when my daughter Heather got evaluated by Early Intervention, I told her about it. My daughter was only 6 months old and her son was over 2. She was amazed that I'd have her evaluated so soon at such a young age. So, she finally had her son evaluated too. He is really super delayed in speech, but receptive and expressive. She really shouldn't have waited so long. She is still in denial about it, but at least he is getting help. I sure hope your friend comes to her senses soon.

[Brandi]

Here's a link on autism that I just saw on my TS board.
http://www.msnbc.msn.com/id/17630334/wid/11915773?GT1=9145

It's an interesting read about autism being genetic.

[Girlo]

Thanks Brandi. :) You know, she is in preschool right now. Unfortunately, the school she's in is lame at best (I visited there when researching schools for Alex) and I seriously doubt the "teacher" will be astute enough to notice that anything is off.

I really don't feel comfortable writing her a letter, for the reasons you already stated. The only people she really knows here either belong to the base or to the MOM's club. I don't want her to feel like we're ganging up on her and talking about her (well, I guess we are....but only because we care about them and want help for them...and we don't know how to approach this to her face) behind her back.
I think what I'll do is wait for her 3 year appt and then ask her directly what her ped said about the speech issues. She brought it up after her 2 year appt, so the concern is public. Hopefully that'll generate a conversation and perhaps a reference to EI might be able to be slipped in there somewhere. :)

[Karri]

Shannon -
Do you think you could give her a gentle prod prior to the 3 year appt to make sure she addresses everything w/ the pediatrician? Just say something like, "hey - are you going to ask your doctor about xxx or xxx on Thursday?" Just so that its in her mind? I know my doctor would cover all avenues, but some may let some things slip through the cracks. Then ask how the appointment went afterwards. You can always use someone on here as an example. Like, "I have a friend who's child was doing xxx and xxx and she has her evaluated at 21 months and she's been in therapy since then, and is doing great with it." Sometimes people need that little push.

[Karri]

I've been following along and will continue to do so, but my case is pretty mellow. Norah's in speech therapy for apraxia of speech. She started in Early Intervention at age 2, and now that she's 3, she is receiving services from our local school district. She only goes once a week, without me, and she goes with another little boy of the same age w/ the same issue.
She's made quite a bit of progress, but I also would have thought that she'd be further than where she is at this point. :dunno:

There have been some issues that have come up concerning Aidan, so after all the proper hoops were jumped through, he recently was evaluated by the school district. We have his IEP next week, so we'll see if anything comes of that and if so, what.

[stass]

Shannon--It is hard. Hopefully her ped will be on it this time! I wonder if the ped actually did mention it before but say wait a few months. That is what mine said at 2 but I didn't wait and am very glad of that. Though I did resist Autism as a dx for a while but he still got services.

Karri--Thanks for checking in. Good luck with the IEP. Not sure when ours is. I think it will be closer to the end of the year.

[WendyK]

I'd like to join!

Evan who turned 3 in December. He has a moderate to severe speech delay. When Evan turned 2 we noticed he was delayed. I wasn't too concerned because DS1 was also speech delayed and from the ages of 2.5-3 his vocabulary just took off. Our Pedi recommended us to wait and see where he was at 2.5 years old. At 2.5 years of age he had about 20 words and MAYBE 1-2 2 word sentences. So as of last June we started the process to get Evan qualified for services. If I would have known how long it would have taken at that time I would have started MUCH sooner. By Sept we had him in Speech Therapy once a week until the school system could get him an I.E.P. As of now he goes to Speech Therapy once a week and as of next August he will be in preschool 4 days a week... :bliss: All of this will be provided by our school district. Technically he could have gone to preschool when he turned 3 but I didn't think he was emotionally ready for that. I kind of regret that now but he it totally ready for it now. I don't see the purpose of putting him in there for just 2-3 months and have to pull him back out for summer.

Evan's speech is really starting to development. Just in the last 2 months we have seen a dramatic improvement. He is still behind but overall he can communicate what he wants and needs to us. Heck we even have a few 3-4 word sentences. Most of his speech is hard to understand. He still has articulation problems.

He's really trying hard! Sometimes it's so sad when he is telling me something that I just don't understand... He even trys to talk slower to help me understand....

I think Evan has some sensory issues too. He gags very easily and has yet to learn to drink from a straw.....

[stass]

Welcome Wendy!:wavey:

[Alyssa]

I taped a MTV thing , REal Life-I have Autism. I thought it would be an uplifting story about how great kids with Autism are doing but the part I watched was too hard to watch. I really hope that isn't how Saxon ends up. I have much higher expectations for him than the part of that show I saw. (maybe there was a hopeful part but the segment I saw was :( ) I had read this when you posted it, and caught the show last night. (As usual, I'm out of the demographic, but I love a lot of the MTV programming. :blush: )

The show did have a lot of difficult parts to watch, as it seemed that 2 of the 3 featured stories were very severe cases. But it also shed some interesting light on kids with autism, and what really goes on in their minds. And that might be good for younger, school-aged kids to watch and learn from to gain some sensitivity towards their autistic peers.

[stass]

Alyssa I did go back and watch it again. It was easier to watch this time. What bugged me is the artistic savant and his outbursts. Some of the things he would say while having a tantrum were familiar. Though Saxon doesn't get aggitated like that, when he is upset he'll say a phrase that really doesn't fit like like that kid did. Then I started thinking maybe he will become more aggressive when he is older. Some of the photos of when the kids were little scared me because they were all cute kids that could have been Saxon.

It is frustrating to be so unsure of the future. I mostly just take stuff as it comes and am hopeful for positive outcomes but sometimes it is hard.

[stass]

Maybe we should have some bragging posts about our kids.

Saxon can read I am not sure what grade level he is at but it is amazing. :love:

He is very sensitive to other people's feelings which is great for someone with autism.

His friends at school really like him.

If only he'd become interested in sports, he is very tall and kinda built for a 5 year old.

[Kate]

My big news about Cameron this month is that he has finally mastered rote counting. I know that most kids do this a lot earlier than 5, but it is a goal that has been on Cameron's IEP since the begining and one I can finally cross off. :woo:

[WendyK]

Evan just had a 5 word sentence today... It was "Watch Pol Pol Expes in TJ's room" translations is he was asking me to watch the Polar Express in TJ's room... :bliss: Then later he said "Hungry, eat chicken"... I know this isn't much for some but for Evan to add words to his sentences is amazing!!:up:

[AmyP]

I have to get out of here soon (stupid truck needs an oil change), but I wanted to post in here real quick. We got back the report from Sarah's speech evaluation with the clinic at the college. I guess we're finally on the waiting list (only took a freakin' month). It was kind of tough to read. Nothing I didn't know, but ouch nonetheless. She's in the lowest percentile for speech (1 percent). She is saying "cat" pretty consistently now, although she doesn't yet say it unprompted. I know she understands the word, she just isn't walking up to cats and saying it. But I suppose that will come with time.

Tomorrow my mom is taking Sarah to the music and movement class that's run by EI (like a Gymboree class). Everybody :crossfing that it goes well this time.

[Shel]

We got the call from Owen's intake coordinator at First Steps yesterday. We meet with the therapist, service coordinator and the intake gal again on the 30th. They are short on Speech Therapists, so they are trying to track one down for him, and we may end up with a developmental therapist with speech training. They are recommending one day a week right now until at least summer, and are hoping by then we can up it to 2 times a week if he needs it. They mailed his report yesterday, so I should get my copy this week. It will be interesting to read.

[Jillian]

I'm here late.

My ds, Kincaid, will be 3 in just 9 days!! He has epilepsy, a diagnosis of ASD though, it is through his neurologist (whom we love) and the school district (whom we also love) aren't sure about it...they think a more proper diagnosis for him is global apraxia... In general he definitely has SID, it effects him a lot in the areas of eating (he just prefers not to) and pain sensitivity (he has none), he has a speech delay, both receptive and expressive, with the receptive being more severe, he is only at about an 18 month level as far as receptive speech goes. He also has gross motor delays (though they are getting much better, and his PT is now something like 15-30 minutes a week as per his new IEP we did on the 9th), hand eye co-ordination issues, and cognitive delays (which have stayed a 1 year delay so far for the last 18 months, so it was HUGE when he was 18 month old cognitively at the level of a 6 month old, but is much better being a 3 year old cognitively at the level of a 2 year old!).

So, in general, he is in an ECDD (early childhood developmental delay) class room, and he gets OT, ST, and PT.

As for positive, we haven't had a major seizure since starting him on topamax in July!!! That's huge for him, it's the first time he's went more than 3 months since his first major seizure at 10 months old. He has made huge advancements with feeding therapy (part of his OT) and speech therapy since starting in the ECDD (as opposed to EI) class room in November. He is also the cuddliest kid in the universe!

[stass]

Hooray for rote counting, 5 word sentence, and topamax!

:patback: Amy I know it can be tough when it is in your face on paper.

Shel Good luck with getting a speech therapist.:crossfing

[Bonnie]

Bragging about Courtney: She is the so sweet so much of the time :) She is just very loving :heart: She is also absolutely fearless and very independent. She'll try pretty much anything.

[AmyP]

Oh, yeah, and the bragging thing. Sarah is really sweet too. She gets really excited when she sees me when I've been out and claps and dances when she sees me and gives me kisses. Yesterday I came back from dance class and she was in my mom's kitchen drinking milk. She actually put down her beloved milk to greet me. How cute is that?

Well, my mom and Sarah are at the library. Sarah's getting a special instruction session and then they're going to go to the little group. I think she'll do fine, but I'm still pretty nervous. She completely freaked out last fall when this started and I pulled her out of it because it just wasn't worth the fight. She wasn't getting anything out of it because she spent most of the time screaming. It was really frustrating for me because NOBODY else was screaming, just my kid. Well, one kid was hollering during physical therapy but they all do that.

Sarah has gotten a ton better socially (not that there were really any delays there to begin with), and is used to being around other kids a lot now. She's also doing a lot more of the things they'll want her to do. We went to something like that group last month and she did great. My niece's birthday party was at a learning center and they did a little bit of circle time and Sarah was fine.

Please everyone :crossfing that Sarah does well. I really think this will help her a lot.

[Jillian]

How did Sarah do?

Kincaid doesn't do well in large groups, but in small groups of his peers he is fine, he doesn't really play with anyone except one little boy in his class room and Janelle, but he doesn't fight or freak out either. But in large groups he doesn't do well at all, like we went to the halloween party at our natural history museum (which is actually a lot of fun), and he ended up standing in a corner flapping his arms, and if we came near him he would try to hit us, and he just screached the whole time...so dh brought him outside, and he was immediatly fine playing outside while Janelle finished doing all the party activities...he does similar things to this at the mall around Christmas (when it's super busy) if he doesn't have his stroller...

[AmyP]

My mom said Sarah did great. The only problem they had with her is she'd get hooked on an activity and not want to do anything else. She said she wasn't much for circle time either, but was basically fine. She's going to take her from now on, but they're going to leave early. She was way overstimulated and my mom couldn't even feed her lunch when they got home because she was too tired. But all in all, she was fine.

I even got an e-mail from Sarah's physical therapist telling me that Sarah did great and seemed like a different child from the last time I brought her. So, a good experience in all.

[stass]

:aok: Great!

I am excited to have this thread!:yippee:

[WendyK]

I even got an e-mail from Sarah's physical therapist telling me that Sarah did great and seemed like a different child from the last time I brought her. So, a good experience in all.

Awesome!! I love it when Evan's Speech Therapist tells us how much she thinks he has improved. It just so encouraging to hear it from professionals!

[Jillian]

I even got an e-mail from Sarah's physical therapist telling me that Sarah did great and seemed like a different child from the last time I brought her. So, a good experience in all.


That's cool, it's great to get positive feedback from therapists!!!

[AmyP]

Yeah, it's a huge weight lifted off my shoulders. I figure once Sarah gets used to going to the class, it won't wear her out so much and she'll be able to stay the whole time.

[Karri]

We had our meeting this morning with the district Speech/Language Diagnostician, the Coordinator, Aid's teacher and Principal and the conclusion was drawn that Aidan has problems processing/producing language on demand. So he'll be receiving speech services 60 min/wk with the school SLP.

[Shel]

Ugh. Sorry Karri. But Aidan is so smart I bet he won't be in there very long.

Owen has another EI, which could explain the fact that he's not picking up the stuff we've been working on at home. His big group meeting is next Friday, so we'll know more about his therapy then

[stass]

Flynn's eval came back normal :woo:. They are going to check in on him for a little longer to be sure he is still progressing. I filled out a word survey on him to check again in 3 months to see where he goes. He has 44 words. He didn't have most of those when he was evaluated just a month or so ago.

So at least I don't have both to worry about.

Today they both have :puke: sickness. :gah:

[Jillian]

Owen has another EI, which could explain the fact that he's not picking up the stuff we've been working on at home. His big group meeting is next Friday, so we'll know more about his therapy then

Uhhg, poor kid! Janelle has only has 2 ear infections thus far, but jeesh they aren't fun, and it seems like Owen has had way more than his fair share!

[Jillian]

Today they both have :puke: sickness. :gah:


Janelle got sick just as we were leaving school today to, hopefully this is just a 24 hour thing, I swear last winter every single stomach bug she got lasted a week.

[WendyK]

We had our meeting this morning with the district Speech/Language Diagnostician, the Coordinator, Aid's teacher and Principal and the conclusion was drawn that Aidan has problems processing/producing language on demand. So he'll be receiving speech services 60 min/wk with the school SLP.

Karri I am just curious what made you feel he had a language problem? Evan is slowly catching up with his speech delay and sometimes I think it's more of an on demand response that he is having problems with. The reason I say this is sometimes if we ask him a question he will answer a couple minutes later. Like it took him awhile to process the information.

[Jillian]

Both kids woke up with runny noses and coughs this morning, Janelle has a fever, but the tummy issues seem to be gone, thank god!

[Bonnie]

I think we are going to take a break from the speech therapy Courtney has been getting at the Children's hospital developmental services section... now that she has switched to the preschool program, she is getting speech at school several days a week, and right now, it is just too much for her to have so much on her plate... she is doing very well, and is definitely making good progress... when pushed too hard, she tends to shut down, and we don't want her to get burned out on too much speech. Both speech therapists tend to agree with this idea. She just turned 3 in January, and her schedule is so full... she has school in the special ed. preschool 4 days a week and goes to a typical preschool 2 days... she attends both programs on Monday, b/c they overlap... plus, she was going to Children's 2 or 3 days a week! Way too much activity in my opinion. So, for the next few months, I think we'll just do school... she'll be off school for the last part of July and all of August, and we'll have to see where she is and what we think we should do at that point.

[stass]

Yeah Bonnie that sounds like a lot.:nod: I think it is smart that you know her limits and are following your instincts! Does the special ed preschool have summer school? Ours does and I always sign Saxon up. Though this is probably our last year since he'll be in K next year.

[Bonnie]

They do have a summer program that goes into late July. Then, we'll have to decide what to do for August, if we give her a break (which works well for her) or do private speech that month.

[AmyP]

Well, Sarah had her follow-up hearing test today. Ugh. Her right ear still has fluid in it and the audiologist said it's read. I'm calling her doctor on Monday and getting her in sometime next week. She had an ear infection in January, and another one in February (that I think was a continuation of the one in January) and there's still fluid!!! I don't know what to do with her. Poor girlie.

He said he knows she can hear, but he can't say for sure she's hearing all frequencies. To test that, she'd have to be sedated (not out completely, like laughing gas sedated). DH and I aren't sure whether or not we're going to do that. At first, we said no way, but now that I know she won't be under general anesthesia I am leaning towards just going ahead and doing it.

[stass]

Amy, Saxon failed a hearing test too. I just let it go because he couldn't comply with the directions for the more detailed hearing test so I blew it off. He can hear.:nod:


So it was a crazy weekend as a mom of a kid on the spectrum. Saturday I went to a workshop on creating intergrated playgroups with "typically developing kids" and our kids. Well it just was overwhelming thinking about finding kids to start a pg with since most of the kids he knows are in the same boat. My friends kids just aren't a good match. Then I just felt shitty for feeling cheated out of a normal playdate where you talk to the other moms and he plays with the kids. :(

So today the sun came out and it was warm so we went to the park. There were two boys on the playground so I used some of the stuff we learned and helped Saxon through the introductions and also engaged with the kids a bit and found out that they were twins who are 4 days older than Saxon and live in our hood :yippee: He played really well with them for like an hour. First just chase and giggling on the playstructure then they all climbed into a tunnel and the other boys started playing that it was an airplane and I was right there helping Saxon figure out what was going on and then he got it and was flying in a :*&*%ing airplane just like them! :bawl:

Then I totally asked the nanny out for a date. :lol: No I gave her my number to give the parents. :crossfing that they call. They might be going to Saxon's school though right now they go to a Lutheran preschool. (lol I can't spell that)

Weird though the nanny gave me enough info to stalk them. I know the mom and dad's names and their last name too. She did it inadvertently though. Like called them the _____ s. She also told me what street they live on. I could totally call and may if they don't call us.

So march ended with despair and now April brings hope!
:bliss:

ps I just realized that April is Autism Awareness month too! :nod:

[Karri]

That is awesome, Stacey!!!

[AmyP]

Stacey, that's great!!!

[Shel]

:woo: Go Saxon! How cool!



Owen met with his "dream team" from First Steps on Friday. They are diagnosing him with both phonological processing disorder and phonetic articulation disorder. They are short on speech therapists, so they handed us about 30 resumes of developmental therapists and told us to pick one that listed speech or communication disorders in their bio. We picked someone named Tami, who has 25 years experience and 2 deaf sisters. We can't begin until April 13th, and right now she only has one spot open, so he'll start with her once a week for an hour. His service cooridinator was going to make some calls and see if a speech therapist would have an open spot soon and would try to get him in. If not, we can continue with Tami as long as we like. If we don't see improvement, we are allowed to switch developmental therapists at any time.

We've been working with him using the cues that the evaluating therapist gave us, and he's not really showing any improvement at all. He'll drag his words out if we do, but he still substitues the wrong letter sounds. The sad thing is that he knows he mispronounces it when we do the cues, but it's like he just can't correct it :( He's also starting to get frustrated with us when we can't understand him. I feel so bad for him. But, I just keep focusing on the fact that we qualified and he's going to start getting help.

[Karri]

Thats's great that Owen will be starting therapy, Shel.

We've been working with him using the cues that the evaluating therapist gave us, and he's not really showing any improvement at all.

Is this your first kid in speech therapy? For us, it was a long time before we saw any improvement. When Norah first started at age 2, it was repitition, repitition, repitition. She was frustrated all the time.
So it'll happen.

[AmyP]

Therapy has taken a while to work for Sarah, well other than physical therapy. We've been working with an OT forever and she just in the last month or two has FINALLY put objects into a container. And this was with lots and lots of repetition and work. She still doesn't chew most of her food without a lot of verbal cues. Part of me thinks she'll be eating Chef Boyardee for the rest of her life. She is still only averages about 15 months with most of her skills. It's very frustrating for all of us! So I definitely know how you feel. Just keep at it, and it will kick in.

As for us, it's a good thing the audiologist picked up on the EI. Poor Sarah has a double EI. I'm kicking myself because I suspected something a couple weeks ago and canceled her doctor's appointment because she seemed to be fine. She still seems fine, honestly. The last two times she's had an EI (in only one ear at that), she's been up all night screaming.

We're going to see an ENT in three weeks to get her ears looked at again. She'll be done antibiotics then, and they can see what she looks like. If there's still fluid, the doctor said the ENT will probably put her on antibiotics again and then maybe drain the fluid. I don't know how, but it doesn't sound pleasant. I can't imagine she's eligible for tubes, and I need to do some research on the whole idea before I agree to it. I just don't want to put her through anything that isn't necessary.

[Jillian]

Is this your first kid in speech therapy? For us, it was a long time before we saw any improvement. When Norah first started at age 2, it was repitition, repitition, repitition. She was frustrated all the time.
So it'll happen.

:nod: it was probably a year of ST before we saw any real improvement. Looking back we can see how it was gradual very very slow improvements, but we didn't see them at the time at all.

Stacey, we could do a playdate with you...but basically the same boat, Janelle does NOT play like a normal kid, and obviously Kincaid wouldn't be very integrated.

[stass]

Yeah Jillian we were all in that boat. The basic gist of it is to have " expert" players teaching the "novice" players. All us at the meeting had "novices". So finding two boys in our neighborhood that will likely go to school with Saxon was a :yippee: moment! Then when they actually did teach him how to pretend to fly the "airplane" was :bliss:.

Is Janelle in the preschool now too? What is her dx?

[stass]

:aok: Shel I hope you start to see improvement quickly!

[Brandi]

Hi guys! I just played catch up with all your updates. I love reading about all the wonderful things the kids are doing. It sounds like lots of good things going on for so many people. Aren't our kids wonderful?

[Jillian]

Is Janelle in the preschool now too? What is her dx?


No, Janelle is just in a normal msrp (I think that stands for michigan school readiness program) class, she is in the afternoon class in the class room that shares a bathroom with saxon's class, mr. Jim is her teacher. No diagnosis(well she has a diagnosis from a dev. psych at u of m of ADD/ADHD and OCD, but I think diagnosing her with something possibly helped their study look better(it was a study on the benefits of tonsilectomies), she was just so young and has grown out of most of those "issues") She qualifies as being "at risk for academic failure" for a million reasons, like being below 5lbs at any point in her life, having a previous failure to thrive diagnosis, have a brother diagnosed with a developmental/cognitive delay... She started in November, about a week after Kincaid started in the ECDD room. In general, she was just very jealous that her brother got to go to school before her and I couldn't find a pre-school in the area that didn't require me to either put Caid on a bus or me be in two places at the same time, so we got her in there.

She's just quirky...she doesn't play "right" it's very noticeable in a big group of kids that she is just different...but she has fun and manages to convince kids to play her way quite often, but the kids she plays 100% the best with all have some sort of spectrum diagnosis...mostly kids from Kincaid's various classes/groups he's been in. If she has any issues they definitely don't affect her day to day life, so we don't worry about it at this point...

[Jillian]

By the way, 3 months to go before we can try lowering Kincaid's dose of topamax! We are at 9 months seizure free!!!

[stass]

By the way, 3 months to go before we can try lowering Kincaid's dose of topamax! We are at 9 months seizure free!!!

Great!

Now I get it. I was confused. That makes sense. Does she go every afternoon? Maybe Saxon knows her. I think he has gone in there to visit a time or two.

[Jillian]

She is there everyday. I know she knows Grace...she keeps wanting me to invite Grace over to play...but *I* don't know grace or grace's mom...that's the only kid from saxon's class she's ever mentioned.

[AmyP]

Just thought I'd pop in here and update on Sarah. She's saying "kitty cat" all the time now (more like "ki-ki-ca" so I guess it's kitty kitty cat). She looks at our cats and says it and will usually repeat it if I say it. So that's going well. She's trying to say a few other words like milk, duck, and I think she called me ma-ma-ma tonight. She has been babbling that for a while but she looked right at me and said it and went on to babble other things.

Her understanding has gotten better as well. Her latest thing is to throw a blow-up football my mom bought her. I've been letting her throw it and then saying "Where's the ball?" when I want her to get it. It clicked recently and she totally understands that now.

Her frustration with her lack of speech is increasing dramatically. While that kind of sucks for all of us, it is a sign she is headed in the right direction. Now I'm working with her to figure out ways for her to tell us what she wants. She knows signs, but doesn't use them much when she's upset. I'm trying to remind her "How do you ask?" and helping her sign what I think she wants. We're also going through another hitting phase, although it's us and not other kids this time. When we can't figure out what she wants, she hits us. So that's rough.

All in all, she's doing really well. Having a kid with severe developmental delays sure is frustrating, but we are working through them and doing the best we can.

[Brandi]

Amy - have you tried pictures with Sarah? I am ashamed to say I can't remember what the program is called - it's mainly for non-verbal kids I think. PECS maybe? I'll try to find out more about it if you'd like me to. Congrats on the Ki ki ka! That's awesome!

Jillian - awesome news about the 9 months of no seizures! COOL!

[stass]

This is the title of a Hanen book. We did a Hanen program with Saxon early on before we put him in the preschool program. It was pretty good. It is a good place to start. We also used pecs early too.

It Takes Two To Talk: A Practical Guide For Parents of Children With Language Delays (Paperback)

[AmyP]

My library doesn't carry the book. I'll check with DH before buying it because it's $50 on Amazon.

Sarah doesn't really point to things. I am going to try printing up some pictures of stuff she might want and work with her on pointing to something and then getting it.

[Shel]

Owen's therapist called last night and we'll start with her on Tuesday. She seems to be very nice.

[Shel]

When I got home today there was a message on the phone from our service coordinator, and they found Owen a speech therapist :up: We were supposed to work with a developmental therapist with communication delay experience until a ST could be found (Indiana has a huge shortage of ST's right now) and the service lady called in some favors and got us on someone's list! This means we have to wait another week to start because of paperwork, but we are on our way

[Brandi]

Yeah!

[stass]

That is awesome!

[Jillian]

Sarah doesn't really point to things. I am going to try printing up some pictures of stuff she might want and work with her on pointing to something and then getting it.


Kincaid didn't point either, he ended up figuring out how to talk before he figured out how to use PECS, they just never clicked for him, and after about 9 months he started talking more so we just gave up.

[stass]

How is everyone doing?

Saxon has the flu 104 fever yesterday!!!Feeling much better today. :phew:

He had his 5 yr check today. He is 47 inches(>97%ILE) and 53 lbs.(96%ILE)
He did really great with the doc. He was talking to him and very cooperative and even playing around by trying to untie his shoe laces. He was laughing hysterically about this. :lol: His ped was very pleased at how well he has progressed. :nod:

Trouble with being so big is more is expected of him when he is actually behind developmentally. :( It is okay though, maybe his size will keep the bullies at bay. :dunno:

[Brandi]

OH, I know what you mean about being big. Carter isn't quite as big though. He is 46 1/2 inches and around 48 pounds I think. So, very close anyway. People think he's older than he really is too.

[AmyP]

Hi all! Sarah's been really behind in her eating lately. I mean behind for her. She was refusing anything more complicated than Spaghetti-o's until Monday night. She's still a bit weird about food. I am chalking it up to her ear problems, so I'm not stressing too much.

She had a great hippotherapy session yesterday. She's not riding the horse yet because she isn't ready. Poor girl had a meltdown in the barn, unfortunately. I think she's a little overstimulated and maybe a bit overwhelmed. I'm not sure. She did pet some of the horses, though, so that was really good. The good part was when we put her in the dressage ring to walk around. It's kind of a graveled (sp?) surface. She was apprehensive at first about walking on it, but she figured it out quickly. She was playing with a ball they had there and she really wanted it so she had to figure out how to walk on it. Then we put her in a softer riding ring and she figured out how to walk on that even more quickly. She even walked on the grass down a small hill without too much trouble. We weren't intending on that, but the ball went there and she went after it. The instructors and I ran over to her to try to keep her from falling, but she was fine. She looked at us like, "What is your problem? I was just getting the ball." :lol:

So that was really encouraging. When we play outside she just wants to run on the patio and won't walk on the grass. So I think I'm going to work with her on that a bit.

We saw the ENT yesterday and she's getting tubes. I just scheduled her this morning, and it will be May 16. I have to call her doctor and get her in for a pre-op physical (she just had a physical three months ago, but whatever), but I don't really have any other major preparations.

So that's her in a nutshell for now. I'm hoping with the tubes she'll eat better and talk more. She's really trying these days, lots more babbling with more variety. Hopefully when she's hearing better and there's no more pressure in her ears she'll do even better.

[Jillian]

Everyone here is sick sick sick....this is seriously the weirdest virus ever, it started with Caid...we noticed he was probably sick when he yawned and we could see his tonsils touching eachother...that night he seemed generally miserable and his temp was like 98.8 (yea, he does NOT run fevers, normal for him is between 96.5 and 97)...the next day he had a runny nose, and then he had Diarea for a week...and then this really weird rash, he's been to the ped and the dermatologist now and no one has any idea what this rash is just most likely some viral rash.

Then I caught it...horrible horrible cough, fever, and headaches/sinus pressure...the fever went away but I still have the cough and now a runny nose, and then two days ago my mouth totally broke out in these white bumps, they are on my tongue, gums, the roof of my mouth, back to my throat...it's not thrush and the strep culture was negative, so again, just something viral, but god it hurts so much.

Then Janelle, she's ran high fevers (103/104) keeps complaining of headaches, has a runny nose, and now today has had 3 nose bleeds, she had never had a nosebleed before in her life. Luckily it seems no fever for the past 24 hours or so for her.

DH still hasn't gotten it.

So, neither kid has been at school all week, and everyone is just miserable...and Kincaid does not do well with 7 days with no therapy what so ever... I cancelled my OB appointment yeasterday cause I didn't have any desire to pass whatever this is on to pregnant women/newborn babies.

[Jillian]

He had his 5 yr check today. He is 47 inches(>97%ILE) and 53 lbs.(96%ILE)

Wow, I knew he was big...but wow...Janelle is about 40" and 27lbs...we are hoping she will be at least 30lbs at 5 (not untill september). The shocking thing is she is not the smallest in her class this year...she's definitely one of the smallest, but there are at least 2 other girls who are shorter than her! It's not fair that people expect more out of him...I mean no matter what size he is, he's still just a 5 year old kid. Kincaid is also on the smaller size, and he still looks babyish, people are shocked to find out he is 3, so he gets away pretty well with not being able to really communicate yet and just riding in a stroller and such, cause he looks pretty young.

[Jillian]

Hi all! Sarah's been really behind in her eating lately. I mean behind for her. She was refusing anything more complicated than Spaghetti-o's until Monday night. She's still a bit weird about food. I am chalking it up to her ear problems, so I'm not stressing too much.


Kincaid goes through streaks with his eating (like this week with no therapy he is eating pickles and plain bread...that's it...we are going to pick him up some sushi tonight cause he will never turn that down and he needs protein)...some times he is doing really well (for him) and other times he will go a week or 2 with basically eating nothing at all and we get all stressed out... I think he has a goal in life to terrify us.

[stass]

Saxon hasn't been to school all week either. I am hoping tomorrow since they are having a make up day. :crossfing he will be fever free!

Hope you are feeling better soon too!

[Jillian]

My kids went back to school for the first time today. We finally figured out what Caid's rash is...it's Pityriasis Rosea...which is basically just a benign rash...it's not usually itchy, it's barely contagious, no one knows how people get it, it's not dangerous in pregnancy at all if I were to catch it, there is no reason for him to not go to school... We had the choice between doing a 2 week course of prednisone or just leaving it alone and it will be gone in a couple months on it's own...we chose to leave it alone since it's not bugging him at all. So he was back at school today, he has a new kid in his class that I guess he isn't to happy about... Janelle is doing better...her only issue now is a runny nose, a little bit of a cough, and she still needed a nap yeasterday (which is unheard of, she hasn't napped in like 3 years!)...hopefully she does ok today, she's still got an hour and a half of school left.

[AmyP]

Hi guys!

Sarah's doing really well these days, other than in her eating. I'm chalking it up to her trouble with her ears, so I'm just letting it go until she gets the tubes.

She is doing great in her "class". She's starting to do more parallel play and she actually sat for most of circle time this week. It's the first time I've brought her, but my mom said she usually doesn't sit for circle time. She gets fixated on toys, and she got very angry with me when I yanked her away from something she'd been sitting at the whole time. I did get her to help me glue a picture of a horse on a paper and color it. I used the glue stick, but she willingly helped me pat it down. She also colored it hand over hand with me. So that's progress for sure.

There was one situation at the group that got on my nerves but I don't think I can do anything about. There's a little girl (who, coincedentally is also named Sarah) who is 3 and she's the older sister of a child in the group. So she's technically not supposed to be there, but I certainly understand the mom has to bring her. That's not my problem. My problem is that her mom lets her roam free. She was purposefully taking toys away from Sarah and getting her really upset. I know it's typical of a 3-year-old to take the toy they want and hold it away from another child. I just think the mom should be keeping an eye on her at least from time to time. She's supposed to be working with the younger child, but she should be making sure from time to time that the older one isn't causing trouble. I know that's easier said than done, though.

So I guess for the moment if I'm there I'll just take matters into my own hands. I wasn't sure if I should, but Sarah's teacher stepped in and stopped her. I suppose I'll do that because the mom obviously isn't aware of it.

Oh, I have a favor to ask of you guys. My brother is doing a paper on autism. Would someone who has an autistic child be willing to talk to him? I'm not sure if he's going to talk to anyone or not, but I told him I know people who have autistic children and he seemed receptive to the idea. PM me if you would mind talking to him and I'll see if I can arrange something.

[Jillian]

I brought Janelle to Kincaid's Early Intervention classes...cause like you said, I didn't have a choice, but Janelle had to participate just like all the other kids, and I did not let her roam around free or anything, she was 3-4 years old while Caid was in the EI classroom.

[Brandi]

Amy - there always seems to be one of those moms in every group that just doesn't "see" what her child is doing. I've had that experience before, but her daughter was punching my baby in the stomach when the mom just didn't happen to "see" her. I'm sorry you have to deal with her. Can you talk with the teacher about it sometime?

[AmyP]

I asked my mom about it since she usually brings Sarah to the group. She says the other Sarah has played with her nicely before and was maybe just in a mood. She suggested I say something to the mom politely. Just on the lines of "Your daughter was taking things away from my daughter and really upsetting her. Can you try to keep an eye on her or is it okay for me to tell her to stop?" :dunno:

[AmyP]

I got a call from the college today where I took Sarah for a speech evaluation back in February. I don't know for 100% sure, but I think we're in for the summer session!

[stass]

:aok: what is the program??

[AmyP]

It's speech therapy through the clinic at my old college. We had her evaluated through them in mid-February and were put on the waiting list. We have to pay for this therapy, but we feel like EI isn't doing enough for her speech issues.

I got a call yesterday clarifying our availability and she said we should hear back soon. The session starts June 11. That's a great time for us since Sarah will have had the tubes in her ears for a while by then.

[AmyP]

Sarah went to her group this morning and I only had to stop the other Sarah from taking her toy once. I let it go if she had it first, but I drew the line at intentionally yanking it out of her hand.

Later in the group she was being really sweet to her. They play with the parachute at the end and she wanted Sarah to sit with her on the parachute while we spun it. Sarah wanted no parts of it, but I appreciate the other Sarah trying. :)

[Girlo]

Just an update on my friend. :)

I talked with a mutual friend who is closer to her than I am. Her daughter, L, had her 3 year checkup about a month ago.....lo and behold, she's autistic! Her mother is baffled! She doesn't understand how it's possible when all she can see is a speech delay. However...the speech delay isn't her daughter trying to communicate; L mostly grunts. :( I guess the determination on how high-functioning L is has yet to be made....but from what we've seen, it's not high.

The good news is that L is getting enrolled in a special-needs preschool in our area soon. :) We're glad she's finally getting the help she so badly needs and perhaps her mom can get some support and knowledge about what's going on with her child.

Thanks again for all your support and feedback with my earlier posts. :hug99: It's definitely helpful to have a wide community that's so supportive.

[stass]

They don't really give you a High or low score IIRC. Though PDD_NOS as a dx usually means High functioining Autism. (Our behavioral ped called Saxon that but the school just put him as ASD, which is the one that gets the most services)

Glad she is finally getting help though!

[Brandi]

Oh Shannon - that's wonderful news. Well, not that the child is autistic, but that they now know and are getting help! YEAH!

[Kate]

Looking for some help here...

In the past few months Cameron's behavior has become horrible. He is acting very aggressively, defiant and sometimes down right nasty. He recently has been saying how he hates certain people (i.e. me, his teacher, etc...) and that he wants to kill us. He is having major tantrums when he doesn't get his way or if I try and punish him for acting out (hitting & biting). I try to limit putting him in a timeout because he is so upset by it and it never corrects the behavior, I do it more so that Alex can get a break. He pushed Alex down the stairs last night because "he was in my way". I am so scared that Alex will get very hurt by him.

I emailed his teacher to see if he is also demonstrating this behavior at school. I am waiting to hear back from her.

Do you have advice on things that I could possible do to help him? I try and redirect him and find out why he is so angry. I am just getting so frustrated with it and am getting at my wits end. I have even been losing my temper and yelling at him which I know is not going to solve anything. I am just so scared for Alex because it seems that a lot of his physical aggression is toward him and me.

I have been reading up on things and I did read about Opposition Defiant Disorder..

Listed below are DSM-IV symptoms for ODD:

1. often loses temper;
2. often argues with adults;
3. often actively defies or refuses to comply with adult requests or rules;
4. often deliberately annoys people;
5. often blames others for mistakes or misbehavior;
6. is often touchy or easily annoyed by others;
7. is often angry and resentful;
8. is often spiteful and vindictive;

We have an appointment with the neurologist in July and I am going to ask him about it and get his opinion. I have also been keeping a journal of his tantrums and lashing out.

It is just so hard and I am just so tired right now...

[AmyP]

I don't have any experience with your problem, Kate. I'm really sorry Cameron is so difficult. Have you thought about contacting a child psychologist or psychiatrist? Maybe somebody could help him until you can see the neurologist.

[stass]

Kate :hug99: I agree that talking to a therapist would be good. I wonder if the divorce is effecting him? Can't hurt to have him talk to someone.:dunno:

[AmyP]

Hi all! Right now we're playing the waiting game regarding speech therapy. The local children's hospital has a waiting list I was told was three months long, but the coordinator said they'd call me back this week regarding an evaluation and all. She said there was a long waiting list but not anymore. :dunno:

We're on the tentative schedule at my old college's clinic (where she was evaluated in February) for 2x/week this summer. But if we can get her in at the children's hospital, we're going to go there. I'm happy with college students working with her, but if we can get her in with real speech pathologists, that's even better.

[Shel]

Owen had his first speech therapy appt. I like her. She's a scrapbooker :giggle:


She said he has mislearned a lot of the sounds that are normal for his age group, and subs some inappropriate sounds instead. (like he'll say "nair" for there and most kids his age will say "dare") They did a puzzle, read a book (that had puzzle pieces in it) and worked with a piggy bank and big fat coins. He kept asking her to "boeben peas" the bank and finally, she got him to say Open (please is still peas, but hey!) We all went nuts, he got embarrassed and hid :lol: All night last night he kept walking around like he was practicing "O-pin o-pin".

Her main goal is to just make him repeat sounds that are appropriate for his age group until he starts using them correctly and more consistently and work on his phrases. "He has some nice one syllable words, but his phrases are intelligible". I should get the emailed report tomorrow.

She's pregnant, and due in November, right before he would age out of First Steps, so it's actually good timing! Next week we're off, but in June start on Wednesdays once a week for an hour.

[AmyP]

Hi all!

Sarah's doing really well. She's in speech therapy 2x/week at the college. The girl working with her is very nice and Sarah seems to like her okay. She's working a lot on communication - getting her to tell us what she wants and such. I like that. She'll figure out how to talk whenever, but the important thing to me is to get her to tell us what she wants instead of screaming her head off.

OT is going well too. We're working on introducing new foods and textures and she is dealing with them okay. She is almost completely spoon-feeding herself without help. She hasn't gotten the hang of scooping the food onto the spoon yet, but she can take the spoon out of the bowl, put the food in her mouth and put the spoon back into the bowl independently.


So now, we have a different problem. My family. Or moreso, my brothers. They don't think we should have another child. They think that another child would take time away from Sarah and that we wouldn't work with her as much if we had another one. Ummmm...:wtf: Where do they get an idea like that? Of course we'd still work with Sarah. Besides, she'll be in preschool after she turns 3 and will be getting special services from the school system. And we have plenty of help around here - my mom is a retired teacher and lives 15 minutes away. She could easily take the second child for me for a bit and I can work with Sarah or she can work directly with Sarah. I'm a good mom and I'm not going to stop working with Sarah just because I've had a second child.

Thankfully my mom came to my defense. She said to them that we absolutely have the right to a second child and that we would never let the work we do with Sarah lapse. Yay Mom!!!

I'd be lying if I said I wasn't nervous that the second child will have Sarah's problems. Of course I'm worried about that. But I want another child and I feel like we can "roll the dice" again. We're more than likely done after two children anyway, but we are definitely not having a third if the second child has Sarah's problems.

Anybody else been through this? It's just so aggravating. I'd understand if I had more than one child and they were all delayed or something, but just one kid? Give me a break. It would be one thing if I had my head in the sand and didn't do anything about her delays, but I've been on top of them from the start.

[stass]

No one gave me any of that when I was trying to have another after Saxon. To my face at least. I had thoughts of what if but I wouldn't have not had Saxon if I knew what he'd be like. KWIM?


Anyway Flynn has actually been a great help to Saxon. He is in his face and helps teach him how to play. We actually lost a few pregnancies between Saxon and Flynn. I do like their 3+ year age difference. Seems like things happened for a reason. :dunno:

[Brandi]

I'm sorry that is happening Amy. They have absolutely no right to tell you not to have children. But, they are probably just worried about YOU! So, they most likely have good intentions. Still though, they should just mind their own business. It's a really hard decision. For us, we WILL NOT be having any more children uless God intervenes. We couldn't deal with another child with TS. BUT, that is TOTALLY different than what you are dealing with with Sarah. TOTALLY! It's a very personal decision. You know what can happen and you are willing to take that risk. It's your decision.

OK, done rambling. Just tell them to stuff it if they bring it up again!

[AmyP]

I guess I should clarify. My brothers didn't say it to my face, nor would they ever. They told my mom, not me. :rolleyes: They're very passive-aggressive people. But that's an entirely different thread!

[Brandi]

Well, then, did your mom really need to tell you that information?

[Shel]

It's probably because your family knows how much less time you have once you have more than one child. There is no way to devote tons of time and energy to more than one child. It's a well known fact and I've read lots of people on OUAL who say that they didn't have as much time to spend with their subsequent children because you have to divide your time between so many things. You probably won't be able to work with Sarah as much if you have a baby, but that doesn't mean you will stop working with her totally!

However, it's not their decision. If you feel you can handle Sarah's special needs, plus another baby, then do it, and prove them all wrong. You just have to remember that even with Sarah in preschool, there will still be more and more things you have to do: more laundry, nursing a baby while trying to help Sarah in the evenings with meals, baths etc

[AmyP]

Well, then, did your mom really need to tell you that information?
Got me. My family's kind of nuts. Possibly my mom's creative way of telling me to make sure I still work with Sarah when I have another baby. :rolleyes:

You probably won't be able to work with Sarah as much if you have a baby, but that doesn't mean you will stop working with her totally!
That's my point precisely. They seem to think I won't be working with her at all or something.

I know having a second child is going to be tough. But I think it's tough whether or not your child has special needs.

Also, this time DH will be out of grad school so I will have more help around the house and with the kids. Sarah will be in school 4 days a week for 2.5 hours at a time when she turns 3. Between all that and my mom's help, Sarah will still get what she needs.

[AmyP]

I just had to pop in here and brag.

Sarah had her best speech therapy session ever today! We brought her blanket in with us (major comfort object for her) and I think it really helped. Anyway, we are focusing a lot on imitation, taking turns, etc. Sarah did almost everything the clinician and her supervisor asked. She seems to be trying harder to talk. She said "ba-ba-ba" for "pop" (a pop-up toy she loves), and "bu-bu-bu" for "bubbles." She did a lot of imitating various sounds.

I'm amazed how quickly she's progressing. This clinic has done more for her in the past month than EI has in the past year and a half!

So, we are NOT going to be switching to the children's hospital in the fall. The clinic at the college is working and "if it ain't broke, don't fix it!"

[Jillian]

Way to go Sarah!!

We are doing great here so far this summer. Kincaid is getting GREAT at swimming (with a life jacket...though yeasterday we convinced him to just use water wings and he did fine, but as soon as we let go of his hands the first thing he did was swim to the pool steps and go grab his life jacket) and he LOVES it sooo much...he's really fast to!

[Brandi]

Cool updates ladies. Sounds like things are going well for you both!

Heather is just starting a new medication for her seizures. She is doing well and her speech is getting better and better. She is a smart cookie! She will start at the local early childhood development school here in the fall. I'm very excited!

[Connie1222]

I just posted this in the SN forum & copid it here. I look forward to getting to know you all!

Hi everyone, I just re-subbed so here goes:

Jack, who is almost 6, was diagnosed as "high risk" for ADHD & ODD at 4 1/2. Most recently, he was diagnosed as PDD NOS by a different developmental ped, but I'm not too sure about that dx. He does have some characteristics of it (arm flapping, social delays), but as he gets older, I'm seeing him as very social and he's getting along with kids much better. On August 6, we have a follow up with our original developmental ped, so we'll see what they say. I'm sure we'll get a full on ADHD dx this time, we'll see what they say about the PDD. He also has sensory issues: smell, touch (as in he like to crash into things, deep pressure, etc.) and hates loud noises. He's also been very aggressive in the past (but getting better) and very quick to anger. He just finished kindergarten in public school in a 12:1:1 setting, gets OT and counseling and PT will be added for Septmember. I had him evaluated for PT this past spring and he qualifies, as he can't pedal a bike or go foot over foot when climbing down the stairs. This really pisses me off, because he was evaluated in CPSE for PT and they said he was fine. He could have been getting PT for the past 2 years. Oh well. He'll be in the same 12:1:1 setting for 1st grade. This summer I have him in a SN camp for ADHD & high functioning PDD kids and he's been going GREAT! This camp is just fabulous & he loves it! I have to say, we see a huge improvement in him this past year as far as social situations, sharing, transitions & his sensory stuff.

Patrick who is almost 2 1/2 is in Early Intervention for Speech, OT & Special Instruction. I had him evaluated at 18 months, because of Jack's issues and I am always kicking myself for not getting Jack evaluated back then. So I decided to be proactive with Patrick. He is doing great with speech, his SLP think he may not qualify again when he ages out of EI. OT & SI though, I feel he will still need it and I have ro decide whether I want to get him in CPSE early or extend EI. I'm hoping to get him in a center based preschool either in Jan/Feb or for next September.

[Jillian]

:bighug: Connie.

We are in the process of moving to Denver, and need to get there and choose an apartment so we know what school district we'll be in so we can talk to them about Caid...he will have to be re-evaluated and such...

But, we can't fly to denver and look for apartments till Travis is a few weeks old, so we are basically just waiting for Travis to come then we'll book the flight. They start school there in mid august and we won't start school here till early september.

[Brandi]

Hi Connie! I think it's really hard to dx sometimes when the kids are just on the border of different dx. I know for TS kids, they fall through the cracks a lot because they just don't have THE normal characteristics of a lot of problems, like autism. A lot of them are unbelievably social, look you in the eye, talk, but yet, they still are autistic in some ways. It's very hard. And, maybe THE most accurate diagnosis isn't the biggest thing here, but rather that he is getting the help he needs. THAT is the most important thing. Don't kick yourself - hindsight is 20/20, right?! You are doing it now and that's what counts. It's so hard, especially with the first child to know what's normal and what's not. Nobody lives with you and spends 24/7 with your child, so they might say "oh yeah, my son does that too" when they don't REALLY know what you are talking about. KWIM? Anyway, I hope that things keep progressing nicely for both your kids!

[Connie1222]

Thanks Brandi, and you are 100% right. I keep obsessing about the label, but I should be happy that Jack is getting the help he needs and is thriving because of it.

[Brandi]

We took Carter to a therapist to get some help with his behavior. She was so busy worrying about a diagnosis that she couldn't help us with knowing what we could be doing to help him. It was ALL about the diagnosis. He is so borderline having anything really wrong with him that we just needed some tactics to help us to live in our house in a peaceful way instead of having all the problems that we were. Anyway, I'm glad they are both getting the help that they need.

[stass]

Hi Connie! Welcome.
I have also said the should've could've stuff and had Flynn checked out in light of Saxon's troubles too. Your boys are both respectively about 5 months older than mine. I am all about getting FLynn help if he needs it since I have seen how much SAxon has been helped and how great the early intervention is here.

Saxon is very social and one ped said he was PDD NOS but I took the school's ASD diagnosis for more services. Whatever gets him what he needs.

Glad to have you here. It will motivate me and others to post again. :)

[Jillian]

Kincaid is very social one on one, or even in smallish groups, and he has GREAT eye contact...much much better than Janelle does.

[Shel]

Welcome Connie. I'm sorry you have to come play here :bighug:

Owen was doing great in ST, but he seems to have just hit a wall and stopped. The good news is that he is now starting and ending words with sounds....however, they are not the correct sounds. Yes = yet Horse = horch :giggle: pop = hop

Since he ages out of First Steps in November, we signed paperwork last week to begin his transition meetings to see if he qualifies for therapy continuing in the school system. All this waiting is so frustrating. It was months between his evaluation to when his therapy started, and now I wonder how long we'll wait for the new stuff to start.

He's also had 3 more ear infections in the last 3 months. Thankfully, they've gone away with the antibiotic ear drops. It should be about time for the ENT 6 month appt. I should call today and find out when that is :blush:

[Connie1222]

Hi Shel! So is Owen turning 3 in November? I'm assuming First Steps is like Early Intervention here in NY. I think that sounds like progress on Owen's part! Good luck with the next step, I'll be doing the same in a few months for Patrick.

[Connie1222]

Today is Jack's follow up with the developmental pediatrician. She originally dx Jack as "high risk" for AD/HD & ODD. I'm bringing the rating scales that Jack's teacher filled out, plus his IEP & report card. I'm pretty sure he will get a full on AD/HD dx this time, but I'm curious what she will say about the PDD NOS dx he got from the other dev ped. They didn't even send me a copy of their evaluation & when I called about it, they said I didn't fill out a HIPPA form! WTF? I'll post an update later or tomorrow.

[stass]

We are looking into therapy to deal with Saxon's anxiety. He gets really upset when someone cries at school (that won't happen on the first day of kindergarten right?) After someone does cry he starts trying to prepare for that person to do it again and doesn't pay attention to school, just to the kids who may cry.

I have a call in to a therapist and his preschool teacher is going to talk to another doctor. It may end up with some medication which I am coming to grips with. He is so smart I just want him to get past this so he can do well in school!

[Connie1222]

I have a call in to a therapist and his preschool teacher is going to talk to another doctor. It may end up with some medication which I am coming to grips with. He is so smart I just want him to get past this so he can do well in school!

Boy, do I hear that. Good luck!

[Connie1222]

My 13 year old stepson is visiting us so he's had a monopoly on the computer. Jack's visit went..Ok, I guess. No real surprises. We see a nurse practioner, she compared the teacher rating scale done when Jack was in Pre-K to the one his K teacher did, and it seems Jack is getting a little better. Most of the scores were lower in every category except anxiety. His socialization I find to be getting a lot better. Based on everything, she said she scored him as "very likely" for Asperger's and a high functioning PDD NOS, but she said, she doesn't like to dx so young. So for now he is AD/HD combined type & ODD. She gave me some articles for Keith on meds (which he is DEAD SET against) and she wants to see him again in November. She gave me rating scales for myself & his teacher to be done 6 weeks into school. She wants us to see someone for behavior modification, which I've been trying to find someone for a while now. So that's the story.

[stass]

http://www.amalah.com/amalah/2007/08/assessment.html

This is a great description of what it is like having a kid tested and all the emotions. Wish I could have read this post in 2003.

[Shel]

They scheduled Owen's transition meeting for the 24th. They will reevaluate his needs and see if he will qualify for ST through the school system since he ages out of First Steps (EI) in November. His ST is concerned he won't qualify since the majority of the mistakes he makes as far as sounds are age appropriate (like S, R, L) however, he still is a little incoherent when it comes to 3+ word phrases, and still substitutes a lot of sounds. It's sad for me now that I"m seeing kids his age coming to register for PDO here, and they all are so much more well pronounced than he is. He talks like a baby next to them :(

[Kate]

Hey Everyone,
I am back.

About a month ago we took Cameron to see a pediatric neurologist. The evaluation went really well, Cameron did really well with the tasks that the doctor asked him to do. He is pretty certain that Cameron does have ADHD. At this point he says that Cameron is too small to medicate him, which I am happy about because I don't want him on meds yet. He says that right now we are doing all of the things that he would recommend for Cam.

[Connie1222]

Hi Kate!

Can I ask what you are doing for Cameron? Jack will be starting a social skills group but I also want him to see someone else. Thanks!

[stass]

Hi Kate!:wavey:

Saxon got to go meet with the teachers this week with his other friends from his preschool. His preschool teacher set it up to make the transition better for them since ther typically developing peers werent' there. I am so glad they did! He did great and seems to be excited! The first day they met them at his old school and he said "I am not supposed to be here, I am in Kindergarten." :lol:

So I wasn't going to do the bus thing but I found out that with this program just his friends will be on the bus since they all live far apart. So I think he could handle that. Though when I brought it up he said no way! I am going to try to start him on it after he settles in to school.

So yes my kid may be riding the short bus but oh well I wouldn't trade him for any other kid in the world! :)

[Connie1222]

That sounds just great! And most kids love the bus, I was scared to death and Jack said he wouldn't go without me. He never had any problems and it gives them another chance to socialize. Good luck with that!

[Brooke]

Hi everyone.

I finally called our county's infants and toddlers program to have Daniel evaluated for speech delay. He is 23 months old and says only a few words. Most people wouldn't even understand them.

ah-dee - Daddy
ah-bah - Rebekah
ite - light
uck - truck or trash, depending on what he's pointing to
uh-oh
hi
aye aye - Bye Bye
hot
ith - ice
eye - eye
um - gum
em-em - M&M
emmo - elmo

I guess that looks like alot. But how many would be understood by anyone but us?
He only says words that start with a vowel or an "H" sound. Not ball or car or baby. And no Mama or Mommy. My name is HEY! :(

He had the initial evaluation this past Friday. A speech pathologist came to our house and asked me a bunch of questions and observed him for about an hour. She said she's almost positive he will qualify for speech therapy. (he needs to be 25% delayed)

His fine and gross motor skills are way advanced, he's way beyond most 2-yr-olds. But he still says mostly "eh". Plus he bangs his head on the floor and wall when he gets frustrated. And he bites. Poor Molly, my neice, gets bitten almost every day while they are together at my mom's house.

We go to Infants and Toddlers for a more indepth eval with a speech pathologist and an educator on Sept 20. They will make the definite determination and recommendations that day. The therapist will come to my mom's house for the therapy once it all gets scheduled.

He's such a sweet boy and it makes me sad to see him trying so hard and getting so frustrated. While the therapist was at our house, he wanted something to eat (he signed eat and took me to the kitchen) and I had to play a guessing game - do you want this or this? - with him for over 5 minutes before I finally figured out what he wanted. He appropriately answers yes and no to questions and he understands everything he says.

Rebekah's speech was delayed and we did the same eval with her when she was 20 months old. But by 23 months, her speech had exploded and she caught up. Daniel isn't progressing. He's trying but it's just not working.

[stass]

:hug99: Brooke it is a bummer but hey good job getting on top of it.:aok: Also great how advanced he is in fine and gross motor! Early intervention is great and I bet it will help a lot!

[MrsPeacefrog]

I think it's great he is signing. Aiden's speech therapist told me that at this age they count sign as words. Jacob just turned 2 and doesn't name every single food he wants, we spend half our day doing the guessing game. :dunno:

I also have to say that he only JUST had a speech boom in the last 2 weeks before that he was lucky to have 3 words, he has majorly caught up now, he just needed some time. Hopefully that is what is happening with Daniel.

[stass]

True Deb, as soon as I called for Flynn's eval he started talking a lot more. Stinker! We are still watching Flynn. His lady is going to meet with him either next week or the next next week to check on him. Can't hurt. :dunno:

[MrsPeacefrog]

I agree, I did the same with Aiden and it paid off because he did need the help, I was just trying to point out that it may not be a panic stations situation just yet and showing what Jacob is doing considering they are close in age, Dabiel is only 23 months old. Sometimes when we have a child that is "normal" we expect the rest to be the same, but all 3 of my boys have talked and done things at so many different times that I learnt not to worry too much over something.

[Bonnie]

Tatum is not saying all that much either... she'll be 2 in 2 weeks, but in the past month, she is definitely saying a lot more. I think it is great that you are having Daniel evaluated. I am taking a bit of a wait and see with Tatum, but mostly because I'm noticing improvement, and she understands everything.

In our situation, I have one super early talker, Caroline, and one super late talker, Courtney, so I am fairly clueless as far as what to expect.

[Brandi]

Yeah - make sure that your kids hear you talking with the therapists about how they don't talk - it must scare them into it because it sure did with Heather and lots of other kids that I know. Isn't that funny?!

[Connie1222]

Good luck Brooke. I have been there with the guessing game, and it can drive you to drink! Patrick started EI at 20 months, and he was whining, crying, & screaming all day long because he couldn't communicate with us. It was frustrating for him and us! It is amazing the progress he has made. Since we started him early, there's no way to tell if he would have caught up on his own or not. But, I will say we are noticing that Patrick's speech is going above & beyond where Jack was at his age. Jack was a late talker, but it seemed he caught up by 26 months. Now I realize that Jack wasn't really speaking in sentences, he just had a huge vocabulary.

[Jillian]

Kincaid started back up this week. We *love* his new teacher, we liked his teacher last year, but his new teacher this year is just great so far (ms. Angeli). First however they had put him in a class room that was half days twice a week and full days twice a week, which Caid can not do, he needs naps, so then they moved him for me but they only had an opening in this one class, every other kid is between 4 1/2 and 5 years old and then there is Caid who is 3 1/2. His teacher has been amazed a couple times that he has actually managed to keep up on a few activities, so that is good, but most of the time he's behind but they are getting around that by having one of the assistants helping him specifically, and it's working. His homework this week is to learn everyone's names, we have pictures and keep drilling him, so far the only ones he is consistant on is a little boy that was in his class last year and himself.

[stass]

I have had this same dilema. Thought I'd share.

http://www.babble.com/content/articles/features/personalessays/Lutz/Autism/index3.aspx

Dear Stranger Your son's autistic, just like mine.

Amy Lutz

At first, I thought he was just excited to be there.

He ran right into the middle of the circle, beaming, as if to announce: now the music class may begin. And we, the adults waiting with our babies and our toddlers for the teachers to start the "Hello" song, couldn't help but smile back.

It wasn't my usual music class. Because we had missed a session, my sister Keri and I had decided to take my year-old twins and her sixteen-month-old son to a make-up class on a different day. We didn't know any of the families. But of course we cooed at the babies, and clapped for them when they proudly put their sticks away without help, as they were all starting to do.

Except for Ben, the boy from the beginning of class. He wasn't following along with the teachers like the other children. Instead, he spun wildly to the music, or ran in happy circles around the room. Sometimes he would drop into his mother's lap for a hug, but he wouldn't come when she called him. I recognized this pattern of behaviors immediately: Ben was autistic. And what was also apparent was that his mother didn't know yet.

My eight-year-old son, Jonah, the oldest of my five children, is also autistic. Watching Ben was like watching Jonah at music class when he was two, when I still thought he spent most of the class playing with the window blinds because he just wasn't as interested in music as my friend's daughter. I knew nothing about autism then. But after six years with Jonah, even my sister recognized the signs; when Ben started vocalizing in a consonant-free, almost shrieky way, she leaned over and whispered, "Spectrum?," a shorthand way of asking if I thought he was on the autistic spectrum.

"Definitely," I whispered back. Then, "Do you think I should say something?"

"No," Keri said emphatically. Maybe, she added, the mother already knew.

But I was positive the mother didn't know. I had overheard one of the music teachers observing that Ben reminded him of his grown son, who had ADHD as a boy. "Don't say that," Ben's mother said, laughing nervously. That's why I was so sure. To mothers of autistic children, an ADHD diagnosis would be nothing, a minor bump in the developmental road they would swap for in a heartbeat.

Keri was so alarmed by the possibility I might approach Ben's mother that I didn't say anything. Ben was twenty months old. He would be back to the doctor for his two-year checkup in four months. Surely his pediatrician would notice such a classic constellation of symptoms and refer his mother to a specialist for an evaluation.

Not necessarily, Susan Chaplick, Jonah's speech therapist, said when I asked her what I should have done. Despite the astronomical increase in the number of autistic children — a new study out of Cambridge recently leaked to the press reported incidence rates as high as 1 out of 56 among British children; American figures generally hover around 1 in 150 — there are still doctors, Susan said, that tell concerned parents that boys often don't talk until past their second birthdays; who don't ask whether those children can point or imitate or make good eye contact. I was shocked. If there's one thing that all the different factions within the autism community can agree upon, it's the importance of early intervention. Some studies have claimed that up to fifty percent of autistic children achieve a full amelioration of symptoms through early intervention. Given this, it seems terribly negligent for pediatricians to overlook indicators of delayed development.

And maybe it's not just the pediatricians who are being negligent. My husband thought my silence in the music class represented a "moral failure." He didn't care how awkward it would have been to approach a total stranger, or how unlikely it was that she would take my word over that of her doctor, who obviously had never suggested a problem of this magnitude. "You have a responsibility to the child," he said, simply.

But is it that simple? What, exactly, do we owe other people? Clearly, if I saw a burglar breaking into a home, I would call the police. I would pull a swimmer who was struggling out of the water and cry out to a person about to step into traffic. And not only would these people be grateful for my assistance, but I have no doubt I would suffer the full judgment of society if I allowed these events to proceed without interfering.

And yet . . . "Never again," my friend Stacey Tanenbaum — whose son Jordan was in an autistic support class with Jonah five years ago — announced, when I asked her if she had ever suggested to a parent that her child might be autistic. "Nothing good has ever come from it." She said that her observations have been met only with anger. One acquaintance never spoke to Stacey again — even after official confirmation that her daughter was on the severe end of the autistic spectrum. Another friend of mine with an autistic son, Stacey Fliegelman, admits that she has been reluctant to confront parents because she knows "they don't want to hear it."

For some reason I don't entirely understand, when it comes to autism, the analogies fail and the gratitude disappears. "It's not the same," Keri said, when I pointed out I would want someone to tell me if that bruise on my child's leg was actually a tumor, or if those few seconds of blinking were really an epileptic seizure. But why isn't it the same? "You could be wrong," Keri said. And I agree — it would be unbearably cruel to unnecessarily send any parent into the emotional tailspin that follows such a diagnosis. But in Ben's case, I wasn't wrong. When a child exhibits delays in language and socialization, along with quirky behaviors like covering his ears and repetitively touching his hands together, there's no doubt an evaluation is in order.

One explanation may be that parents who have been insulated from the autism epidemic tend to hold many false assumptions about the disorder. They're utterly unable to reconcile their happy, affectionate child with the rocking, head-banging, withdrawn autistic of their imaginations. A second factor may be offense at the perceived implication that the mother is a bad parent for not noticing problems obvious to a complete stranger. Whatever the reason, it's really too bad. Because who better to help identify the tens of thousands of undiagnosed autistic toddlers and preschoolers out there than the parents who know autism better than any general practitioner — parents who have read the books, examined the research and seen firsthand the different manifestations autistic spectrum disorders can take?

So what happened with Ben? When I couldn't stop thinking about him two weeks later, I went back to his music class. Only his mother wasn't there. Instead, Ben was under the care of a nanny. As the teacher was wrapping up, I mentioned that Ben reminded me of my oldest son at that age. I didn't mention autism at all, just that Jonah was a late talker — an approach my sister recommended as being least likely to be met with hostile rejection. I asked the nanny to tell Ben's mother that, because of his language delay, he qualified right now for free speech therapy from the county, and the nanny said she would.

In all likelihood, this will have no effect on Ben's immediate future. I know if someone told me, when Jonah was twenty months old, that I should call the Early Intervention Unit, I would have thought, he's not even two yet. But maybe, if Ben's mother already has her suspicions, this might prompt her to pick up the phone. In any case, I carried my babies out to the car relieved that I hadn't let that family pass out of my life without at least planting a seed of concern. Because I do believe we are all, in some ways, responsible for one another, and that we need to share our experience when necessary — even if, especially if, it's experience we never wanted.

[AmyP]

Interesting article.

I was approached by two women at the pool this past summer when I casually mentioned Sarah's speech delay and they went through their own list of symptoms. Which I thought was awfully rude, especially when I mentioned she was in Early Intervention. I think at that point they should have dropped it. One of them did and said as long as she was getting the right therapy, the label wasn't important. Although she did add that a label will get us more services when she turns 3 (we are talking with a school psychologist to get her labeled for this reason, and we are not sharing any label she gets with anyone). The other mom didn't let up, though, and went so far as to tell me to go to this one clinic around here and get her evaluated. :rolleyes: It would have been one thing if I wasn't doing ANYTHING about her issues, but I thought that was way out of line.

Anyway, I came to post this.

Copied from my blog:

Yet another report I'm just sending everyone to save myself the trouble of reiterating the same story to everyone.

Today was Sarah's feeding evaluation at the local children's hospital. Her OT through Infants and Toddlers recommended this clinic in hopes of giving her an extra push to get her to eat table food.

Well, she was at her worst. She was really tired, a little stuffy (probably from being tired), and really crabby. She drank all of her milk, but then ate one bite of spaghetti-o's, one bit of applesauce, and three bites of cereal. Thankfully they took my word for it when I told them what she normally does.

They said Sarah is growing nicely and getting adequate nutrition. She needs a few more calories and fluids (she gets 98% of required calories and 85% of required fluids according to their evaluation of a three-day food diary I filled out prior to the appointment). She's around the 50-75th percentile in height and weight, so that's great. She's even grown half an inch since her 2 1/2 well child checkup back in early August.

Their nurse practitioner gave us a prescription for Prevacid for her due to her history of reflux. She said it's possible she is still having some trouble with reflux and just isn't showing it. It's a safe medication to give her, and it won't hurt her if she doesn't need it. So I'm off to the pharmacy this afternoon to grab that prescription.

She also had some blood drawn to test for the "big 5" food allergies - milk, wheat, eggs, soy, and peanuts - due to Rob's food allergies. She hasn't shown allergies to any of them (although she's never had eggs or peanuts or anything I can think of that contains them), but allergies can go undiagnosed, so I was all for this.

Anyway, they recommended their feeding day program, which I'm hoping we will begin in December. What happens there is she will go Monday through Friday, 8 to 4, and a team of nurses, occupational therapists, psychologists, and speech therapists will work with her on getting her to eat new foods. There is no "force feeding." They work in other ways to get her to eat - incorporating play and such, making her "avoidance techniques" less effective, etc. She can get speech therapy while there as well, which is great. The program lasts about six weeks.

So right now we're checking on their availability, our insurance coverage, etc. I'm aiming for December because she'll be done the semester at the college's speech clinic on 11/29, and that is close enough to her third birthday that I don't mind pulling her out of Even Start, which is the preschool program she's in now. My issue with pulling her out earlier is not getting her back into it after the six weeks are up.

That's where we are with things right now. I'll let you know when I have an update.

[Shel]

I'm so frustrated. Owen's speech therapist told me today that she didn't want me to be blindsided at his 6 month review next week, so she told me that they have been pushing her to drop Owen because he's Functional. It's nice that he's "functional", BUT he's i