How has your special needs child changed your life?

[Brandi]

So, what is different about your life now that you have a special needs child?

[Mary]

Fortunately, Joe isn't that different from Frances. That said, we have been doing weekly or bi-weekly therapy with him since he was a few months old and that gets hard to continue. When we were told that he needed more therapy at 3 and was actually at the 14 mth level, about the same age as Frances was, I started crying. It is just never ending and I do feel sometimes that it would be nice just to stop it. It is for him, but it gets very wearing to try and schedule who is going to take him, what we need to do at home, if anything, and just getting there with Joe who normally isn't too excited about going.

I also compare him to other kids MUCH more than I have Frances. I think I just worry more about him, especially since he is so much smaller than the other kids, and wonder if more problems will come up later on in his life.

Mary

[Jillsers]

:lol: The easier question would probably be "how HASN'T your life changed?" :awink:

Everything about my life is different. Our lives revolve around these kids and their issues. I spend a lot of my very limited free time researching ways to help Kayleigh and Lincoln, and we go to a LOT of doctor's appointments. Life was difficult enough when we just had Kayleigh's autism to deal with, but add in Lincoln's birth defect, and life is now very, very stressful.

We can't leave the kids with anyone besides immediate family, so that seriously impedes having any kind of non-kid life. We have a hard time relating to people who don't have special needs kids (it's hard to listen to people bitching about how their kid won't eat apples or something when my kid won't eat ANYTHING and can't even say "hi" and my other one may die in surgery at 7 months old, kwim?).

[Brandi]

So far, things aren't too different other than having Heather in therapy once a week now. We have been talking about moving and I keep thinking, well...what will Heather need - will we need to be somewhere where there is a special school, services, etc.... Will we be able to afford what we thought we would be able to? And I think about the future. Will we ever be able to take vacations again? With the kids? Without the kids? Will my child ever go to school? Will she graduate? Will she get married? Will she even speak? The questions are endless. With her diagnosis, there will always be questions. You just never know what the brain will decide to do from one day to the next. At least by 3 years old, we will know a lot more about her condition.

[Bonnie]

I feel like it has just been a lot more stressful... we spent the first year in pretty much weekly trips to the doctor/therapists... that tapered off after her palate repair, but looks like things will be picking back up this fall. It's hard to have an 18 month old who isn't walking yet or talking, especially when Caroline did both early. I know she's making progress and is going to get there on both, but it is still difficult not knowing if she'll always need help. I think a lot of what Brandi said applies to us too... we just don't know what to expect and won't know for a while... she is mostly very typical as far as her development, but lagging in speech and walking, which may be a balance issue, since the child climbs everything in sight! The not knowing and the endless appointments are tough.

[Jennie]

It's been a challenge for both of us as we had the twins just before our 1st anniversary so we've barely even enjoyed a married life that I read some other couples have. We spent the first year of their life in & out of hospital and when we weren't admitted, we had follow up appointments with this clinic and that clinic (which always seemed to proceed one or both of them getting a cold/flu) so it was continuous. We also had EI in our home 1x/week from 5 months onwards until Andrew's dx at 9 months of age when PT & OT began (bi-weekly at first) and then whammo we got hit with the infantile spasms. And the first winter, I was basically house-bound with the kids so that they weren't exposed to germs, etc. So if it weren't isolating enough have twins and then an infant with special needs (x2 as Matt was on oxygen until he was 10 mths old at home), I had to stay in my home to avoid germs.

Things started to improve when I went back to work when they were 18 mths old and they started in an awesome daycare that was right in my office. They had an excellent programme that I think really helped the boys - both socially and physically. It was also fairly easy for me to take Andrew to his weekly therapy sessions as he was right there and the treatment centre was only 15 min away (compared to 30-40 min from our house). My boss was fairly understanding and because my job required travel fairly frequently (usually 3-4 days at least once a month on avg), I have never had to account for the hours spent at therapy TG.

I will tell the rest of you, as I guess I'm sort of the sr member with 6 yr olds, that it does even out and often gets easier once they hit 3'ish... it is true that the picture usually becomes much clearer between 2.5-3.5 yrs of age. We had a pretty good idea how Andrew was going to do developmentally and Matt's CP was finally also diagnosed - mild but it certainly affected his fine motor skills. Also, in our area, we start school at age 4 so the twins started at the treatment centre school in Sept 2003. It was great - they had therapies built into their daily routine - much more than I could ever do at home. (The school has 28-30 kids in Jr. Kindergarden, Sr. K, Gr 1 and Gr 2) I also started to meet some other parents of kids with special needs and that's been a great resource.

[Nadine]

There is the logistic side of how Yumi's ADHD affects out lives. He can't go on the school bus because we are afraid he might endanger himself or others (he won't sit still on the bus). Even though this has improved since he takes his meds we won't take chances. So that means that I drove him to school and picked him up all of last year. School year is about to start on Setember 1. In the mornings we joined a car pool so I will only drive him 2x a week this year. I don't know if that will improve or worsen the situation. The positive aspect of driving him alone was that I wasn't too pressured if it took him HOURS to get ready in the morning. Then there are the different classes he has to take. Last year he had horse riding (= OT), gym lesson and a private special ed class. That meant driving him to those places 3 days a week. This year he will have the special ed, a gym lesson and we want him to start taking private English lessons so he will elanr how to read and write. We pushed it off until now because learning how to read and write in Hebrew was hard enough for him last year. No idea if he will continue horse riding because there is just so much I can do a week. KWIM?
Then there are the daily exercises he needs to do (trampoline, sommersaults, jumping rope, ball exercises). Those are all essential. If he cooperates he can be done in 20 minutes. But often it takes him close to an hour.
Homework is more difficult for him than a "regular" kid and we spend around an hour a day working on it when he has school. But things improved a lot. During the vacation he is working on workbooks.

That brings us to the other aspects. I guess what is most difficult is his impulsive behavior. Out of the blue he can suddenly do something very dangerous or harmful. That includes lighting matches, waving a very sharp knife at us, spraying a color spray at people and things, running across the street ... you name it. Ever since he takes his meds things improved a lot but lately that happens again. (All those examples happenend only in the last 3 weeks.) He also has trouble falling asleep at night (side effect of the meds). So all that makes us very tense and alert and exhausted. It is not a given that he can go to play with friends because he is not invited by other kids. (Parents don;t want their kids to play with him - at least not in our neighborhood. He only started taking meds in December so until then he was very unpredictable) We can't leave him with just any babysitter because he doesn't listen to most of them and endangers himself and others. There is tons more but basically ... you got the gist of things. Our daily life is not what other people would call their daily life. And then add to that the regular things that happen with a 7- and a 3-year old. It is often hard to figure out what things he does because he is ADHD and what things are age-appropriate behavior. Since he is our oldest we have no one to compare him to. And since things are so hard lately we actually postponed any TTC ideas we originally had.... and maybe we won't even have a third child. I just don;t see where I could get the energy from for another one. And that would not be fair to the kids.
The question I keep asking myself is - how do other people manage/cope?

[Brandi]

Nadine - it sounds like you have your hands FULL! I'm sorry you can't get a break from it all!