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yesterday vent

(4 Posts)
mummysarah25 Thu 06-Nov-14 10:49:18

Background: my 18month old DS has dvelopmental delay, "processing problems", non-verbal, low muscle tone and poor eye slight (including a turn)

Yesterday we seen the physio who told me he is "managing his disability in a fantastic way" because he has started walking along the edge of the walls smile yey! one happy mamma. we changed up his daily exercises and arranged a hip xray for in the new year. all smiles and giggles and happy faces.

Then on the afternoon I went to watch my eldest DD in a competition and infront of me was a couple with a son who had down syndrome, wearing the coolest tshirt i have ever seen "keep calm its only down syndrome" on the front. Anyway this little boy was so happy and smiling a real teeth showing smile (more teeth than DS) he was speaking to his parents and he was sitting still. I had a friend taking care of DS because he would not have sat still there or been interested. Anyway the afternoon went on and toward the end i got chatting to the little boys mum, she said he can say his numbers and hes very verbal, hes great with kids and other adults and when hes at home he sits and plays with his toys while she deals with the baby she has. hes no bother at all and hardly ever complains or cries. I was happy for her until i asked how old he was (im thinking 2+) and she said "oh hes 18 months today"

my heart broke. My son is less able than a child of the same age who has a diagnosis of down syndrome. i tried talking to family and all i got was "hes unique" im really hurting inside and i dont know what to do about this feeling. i dont really need answers or any replies i just need to get my feelings out without being judged. down syndrome is a recognised condition and most of the world knows about the difficulties and challenges children with that diagnosis face but because my son has no outside facial features of a condition I feel like im being told to suck it up and deal with it.

sorry if my post upsets anyone. I am fully aware that down syndrome varies in each child as in how they develop and their strengths and weaknesses and i am in no way discrediting any person, child or adult, with a down syndrome diagnosis.

blanklook Thu 06-Nov-14 12:22:17

Every one of our children are unique, they have their own skills and they all learn in their own time and reach their own level of capability.

Big lesson, don't compare your child to other children. Don't compare your child to a child with a different disability. Don't compare your child to a child with similar disabilities. It's pointless.

Listen to your physio your ds is "managing his disability in a fantastic way" flowers

Bilberry Thu 06-Nov-14 12:28:12

I do know what you mean; I remember feeling upset when I realised how bad my ds self portrait was at nursery compared to another child who had obvious disabilities. Of course that child has her own struggles and life will be hard for her. But as she has a recognised disability all the support seemed to line up around her (I'm sure it doesn't feel that way to her mum though). Unfortunately, life as a child with sen is pretty unfair. It is unfair they have to deal with their disabilities at all and unfair you have to fight for support. There will be other sen children who appear to have less problems and more support, who have access to support groups and activities. There will also be other children whose parents aren't as supportive and proactive as you who will have to struggle and fail with little or no help. And, of course, there are nt kids...

You really have to try and avoid comparisons or you will go mad. Look at your own ds, how he is progressing against his own goals. Consider what help and support you need for him and go and fight for it. Don't forget he is now walking against a wall and this is brilliant!

mummysarah25 Thu 06-Nov-14 13:30:19

Thank you so much for your replies. I am so very proud of him and normally it doesnt bother me. I guess im just having one of them days. I also glt his DLA through this week which has kinda cemented it all. Thank you again for taking the time to reply. flowersflowers xx

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