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Having a child with intelectual disability - (An ex premmie baby).

By September 10, 2010 - 6:03am

We must have the patience in the world to deal with a disabled child. My son is a very sensitive little boy. I wanted to sing with him but he didn't like me singing for too long, because there was no music to go with it. My son loves music that he can listen to but to sing when there is no music present he does not like it much. He loves his fun game DVD very much because it has lots of colors, matching games memory games, picture games, nursery rhymes, and lots more activities for my son and he enjoys it very much. He is getting better at the matching games, I have taught him how to match them and now he does it himself. With my help he knows how to count to ten. My son still does not talk very well and has Speech therapy to help with his speech. Because of my sons condition it is funded through Noah's Ark a disability organization, and the Enhanced Maternal Nurse lets them know when it needs renewing then the fund goes to the Kindergarten where my son goes. I do not know how long my son will be on this funding but I was told that I do not need to worry about it. My 12 year old loves to interact with our 3 year old, they get along very well but some times my 3 year old would rather do things with out the 12 year old and my 3 year old tells my 12 year old to go away.

By September 20, 2010 - 4:56am

It was my son's pediatric appointment today, I asked my 12 year old son if he would like to come along with me, he yes why not. So off we all went, first waiting for the bus to arrive because I don't drive and do not have my license. We waited about 15 minutes before the bus arrived, we then stopped at Mentone to board the train we traveled by train as far as Clayton then hopped off at Clayton, then walked to Clayton Hospital. That was all good, we ended up having to wait for hours for the Doctor, apparently their was a mix up, the Doctor thought that we were not attending which was so weird because we got to the appointment in time. Well I happen to notice that there was a Indian woman who was extremely late for her appointment they allowed her to see the Doctor, but it meant that they had to push us out. I knew that was really the case but I didn't want to argue, my son's were getting hungry and so was I then a Nurse came out to see if we had been seen to by the Doctor I said no then 30 minutes after that another Nurse came out to apologize for the inconvenience that may have been caused and asked us if we were hungry we said yes and gave us free lunch as an apology, we were thankful and understood that they may have been under pressure and I could sense it in the air so to speak. My 12 year old son was getting so anxious that he was carrying on like a naughty child and it was seriously sending me batty. He said that I was acting paranoid but I could not help it. Well we all might of been bored and also me feeling annoyed, I tried to go with the flow but this demon kept creeping up on me and causing me to feel annoyed. Today for me was really a mad day. I think I shouldn't of asked my 12 year old to come along but then again I probably still would of felt the way I did. You know I hate that feeling when it feels like hell all around and not peaceful, it's an awful feeling and not very nice at all. I saw a specialist and my son needs his ears drained he has fluid in his ears, my 3 year old no sooner when he gets over a cold when he comes down with another cold.

September 20, 2010 - 4:56am
By September 16, 2010 - 11:54am

It's always good to talk things out just to get it off your mind, I think. Sometimes I think that too much consideration is bad, because it can drive you bonkers like you said. I've tried hard to not labor these points too much, because both my sons are growing and have their own ways--I've tried to take on an "it's all good" attitude for the most part. But you and I both know that's easier said than done some days. Knowing how I am, and how they are can help us adapt to situations sometimes. My sons are prone to outbursts now-and-again, and it dumbfounds me. We get frustrated with each other, and I never really know how to react. When in a store, we often collect ourselves and promptly exit the store. Whatever is in there we can live without until I can either go alone, go when the boys are properly distracted or when they're behaving well. I know what you'll be doing on Thursdays from now on, right? Getting your shopping done!
Glad this is helpful to you. Come back anytime and "vent"...that's what we're here for, to support and inspire each other. I hope there are even more of us soon. :)
Take care, and Good luck~

September 16, 2010 - 11:54am
By September 15, 2010 - 11:21pm

My son's condition is called a language disorder and also has a language delay by 2 years. Yes it does depress me and sometimes I think that I am going mad with his conditions, what I mean by this is that when we went shopping together all that my son wanted to do was scream no matter what I did I could not get his attention at all and no sooner had he calmed right down when I would say how good it is to see you behaving very well and using the sign language to indicate that his is good by not screaming when he would scream on the top of his voice again, this got me so upset that I was talking to myself and keeping an eye on what people were thinking. His screams sound like he has been abused but he hasn't been. I spoke to the Speech therapist about it and also the Enhanced Maternal Nurse, the Enhanced Maternal Nurse suggested to place Samuel into Child Care on Thursday's because he was expressing boredom and that childcare would be more appropriate given the behavior problem surrounding the shopping outing with my son. I agreed entirely on that score, instead of me getting paranoid about the whole situation. You mention if you should push gently, well I am sure you mean encouragement and I say if it is that to encourage yes why not because it is teaching your son to do the things that he may not know with out your help. My son Samuel needed a lot of help and my assistance on being pushy gently to learn to jump and he has only learn' t to grasp it in the last three months and now he jumps with lots of confidence. Hey you know Christine it runs in our family too the depression I am so happy that we have had this discussion with each other. Some times Samuel behavior can be so random and out of the blue that it has given me a fright for it was unexpected, he is three and he still dribbles and I do not know what it means or does it mean nothing.

September 15, 2010 - 11:21pm
By September 15, 2010 - 12:51pm

Hi Wizzy989,
Thanks for sharing your story. What is your son's intellectual disability? I'm assuming he was diagnosed, and referred to the organizations you work with. That's great he's getting the support he needs in your family and at school. Does his condition cause you to have bouts of depression? Does he get depressed?
I have a sensitive child too. He's not diagnosed with any condition, but I do worry about him sometimes. He has a lot of difficulty dealing with change, and being in new situations. A lot of times we have to get his brother to "go first" so he can see it's ok for him to join in. I grapple with how I can help him overcome his anxiety (should I push him gently, or should I allow him to come to things on his own and in his time?), and wonder if he'll always be like this. Depression runs in my family, so I wonder if he inherited this trait from me, or if it just is a natural thing for some people. Parenthood is not easy. But sounds like you are on top of things. Nice work!

September 15, 2010 - 12:51pm

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