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Old 04-22-2014, 02:06 AM   #1
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Default Special needs mums?

Any other special needs mums around here? My son is 4 years old and he has Down syndrome. Would love to chat with other mums of special kids (kids with Ds in particular!)
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Old 04-22-2014, 04:23 PM   #2
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I am the mom of a 16 year old son diagnosed with ADHD and also has autistic traits but he's not officially diagnosed with that....I also manage a childcare center that includes many, many special needs children...I also have a younger son, age 8, who does not have special needs
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Old 04-22-2014, 11:34 PM   #3
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Wow! You really have your hands full then! I thought I had mine full with my little sweetheart! Hats off to you though!! Are you into advocacy or anything?
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Old 04-23-2014, 11:14 AM   #4
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Wow! You really have your hands full then! I thought I had mine full with my little sweetheart! Hats off to you though!! Are you into advocacy or anything?
I help alot of the parents at my center navigate the world of doctors, diagnosis, special education paperwork, etc... (we are in an elementary school building and we take elementary age students) ...since I have already experienced the process of navigating this for my son, who is already a sophomore in high school, i do alot of help with the parents here...i'm seen as a kind of bridge between parenting and school administration because i'm both of those

i also serve on a local board of directors for a national early education organization but it's not specific to children with special needs...and i serve on my school's site council (like a board just for the school itself) and on my childcare center's parent advisory board....but none of those are specifically advocating for students with special needs
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Old 04-23-2014, 11:41 AM   #5
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I have a 17 year old son with strong ADHD and then a just turned 9 year old with Autism (high functioning).
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Old 04-24-2014, 12:56 AM   #6
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Alaska, wow you do a lot!!! I'm a member of our national Ds association, and I organise annual events for October (Ds awareness month) and for World Down Syndrome Day (21st March). I also am involved in the PAC of the school my son will attend when he enters reception.

Question for both of you...my darling boy is gone 4 years old already, and I love him more than I ever thought possible. I don't look at him and see Down syndrome anymore, I just see him. I wouldn't change anything about him (well, I'd like him to be reliably out of nappies already!!) but every now and again, I find myself thinking it's so unfair to him that he has Ds. I know logically he doesn't know any different, and he's a happy guy who is loved, but it hurts my heart that he won't ever father a child, and likely won't ever live on his own.

So that's my question, I guess...how long did it take for you to stop having the moments of "it's not fair" and "why him?" Is 4 years an absolutely unreasonable time to still be having those feelings? To be fair, they're few and far between.
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Old 04-25-2014, 10:28 PM   #7
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Sydney... I want to be as honest with you as I can without "hurting you". My experience is that you haven't even really hit the "why him" or "why me" yet. He is still little. He is still cute. He's still a baby - in many ways MORE a baby for longer.

I know for myself I started to feel the why him? Why our family? When my youngest got to school. When I watched all my friends with like aged children talking about the things their children say or do and mine doesn't. you start to feel more and more left out as your child falls more and more behind.

At some point you accept. "This is who he is." Your realities change. Your expectations change, but I think any parent would be lying if they didn't think from time to time, "Why him?" "Why our family?"
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Old 04-26-2014, 12:55 AM   #8
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I really appreciate your honesty...it's only in the past few months that we've noticed August is delayed compared to other kids his age. His paediatrician tells us the delay will become more pronounced as other kids develop skills and abilities that August either won't develop or will take much longer to develop. Right now, his like-aged peers are his friends because they're mostly pretty similar...but shortly, he will be the kid who's behind. Will they stop being his friends? Will they mock him? Those thoughts make my heart ache for my son, because there's really nothing we can do to change that. August is who he is, and there's no cure for Down syndrome, so...he's not going to change.

I think I still, somewhere in me, expect a miracle...hope that maybe he will defy all the odds and not be delayed. Maybe he will surpass all developmental milestones, even though he hasn't yet. It's ridiculous to think that! I said it to my partner and he looked at me like I was mad, and said "I don't know how to answer that".

I just don't want the world to hurt my boy. I try to focus on the positives, on how in our family we say its more UP than Down, and Peter has taught August to call it Up syndrome, but I guess I'm having a pity day, where I picture my son lonely and sad with no friends and struggling to keep up.
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Old 04-26-2014, 01:07 AM   #9
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And I feel like I'm failing August because Peter is so unfailingly positive about everything and never has moments where he feels sad about August having Ds. His exact response is always, "Why would I be sad about that? It's just who he is. It isn't a bad thing, Grace." and then I feel guilty for sometimes feeling like it is.
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Old 04-26-2014, 08:13 AM   #10
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I think men and women process things differently. Women feel more responsible for their children by nature I think.

And about your son being along and friendless? That won't happen. Friendships will change and of course, there will be some cruel people, but in general, most people are good and kind and loving and your son will always have friends who protect him, like him and want to do good by him.

My son is in the 3rd grade. Regular school. Regular classroom. I keep waiting for the kids to turn on him as he doesn't connect with them much. Doesn't play with them and is.... Well... Completely different. But nope. They still say hi and bye to him when they see him out of school. They treat him well. They know he's different but they have accepted that about him.
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Old 04-26-2014, 11:10 AM   #11
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Oh, that's awesome...I hope that happens for my son!!
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Old 04-29-2014, 05:42 PM   #12
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Quote:
Originally Posted by berryblondeboys View Post
Sydney... I want to be as honest with you as I can without "hurting you". My experience is that you haven't even really hit the "why him" or "why me" yet. He is still little. He is still cute. He's still a baby - in many ways MORE a baby for longer.

I know for myself I started to feel the why him? Why our family? When my youngest got to school. When I watched all my friends with like aged children talking about the things their children say or do and mine doesn't. you start to feel more and more left out as your child falls more and more behind.

At some point you accept. "This is who he is." Your realities change. Your expectations change, but I think any parent would be lying if they didn't think from time to time, "Why him?" "Why our family?"

I have a special boy and Ive often wondered "WHY?!" Ive cried lots but Ive learned to love him for who he is and not who I wanted him to be, he's teaching me a new way of parenting and I love him with all my heart!
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Old 04-29-2014, 06:06 PM   #13
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I have a 12 year old with Autism, and I find that the kids in school tend to watch out for him. It turned out to be much better in a smaller school than when we were in a larger school where he was just a number.

A very good friend of mine has a boy with Down Syndrome who is 16. It's actually gone very well for them. They hold him back from nothing. He plays basketball on special olympics and the high school team has made him a special team assistant.

It's possible for him to have a very rewarding life. Just don't hold him back support him in whatever he wants to try. Relationships are really the key, with special needs kids in my opinion. The more people you know, parents, teachers, etc, the better it will probably be.
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