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SN children

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Original poster

Its so hard as we approach my sons 1st birthday....!!

14 replies

lourobert · 21/08/2006 18:32

Its actually 2 months until my little boys birthday but my god, am I finding it so difficult. I see all theother 10 month olds crawling around and exploring while my son lays there happily,looking around.

People keep asking what toys louis wants for his birthday...Louis doesnt play with toys all that much but its hard to explain that to people!

I used to think how Louis would be on his first birthday and its nothing like I thought- its not worse, just different.

I sometimes sit and daydream about how things should be, all the things Louis might be able to do at 10 months if things were different. sometimes I wish I could have a glimpse of that-for just a day.

It hurts so much, Louis wont miss out on his birthday- weve a party planned with all his family and friends, I just hope I dont spend the whole day thiking 'what if'

OP posts:

jollymum · 21/08/2006 18:39

Hi can I ask what his problems are? Sorry if it sounds nosey but trying to help. Any one year old has no idea about parties anyway or presents so he's not that different! All one year old parties are for grown up-get drunk and wonder how they got through their first year of being parents. My oldest ds, now 16 had a first birthday party with me, my ex dh and new dh together. All the families, everyone avoiding each other etc and I got quite pissed! I couldn't believe my ex dh had the cheek to bring "her" to his son's party but what the hell, she was my best friend Enjoy the day, celebrate what you have and look to the future. Give him a kiss and thank god he's here. Life may not be perfect but he's here and learning every day. Sending you love and understanding.xxxx

jollymum · 21/08/2006 18:44

bump

Original poster

lourobert · 21/08/2006 18:49

my son has infantile spasms and williams syndrome.

Its not the party so much that upsets me, i know 1st birthdaya are for the grown-ups more than anything, its just that hes a year old and things just arnt how I thought they would be.....!! I still cant help but compare him to other babies the same age!

Im am so thankful that Ive got him just wish I could do more I suppose

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jollymum · 21/08/2006 18:59

I just looked up the stuff on google. It's shitty isn't it, but he's here and that's it. Where do you live (areas?) and maybe Mn's can help or have ideas? You have a little man there and I bet someone on this website can help/have ideas. I can never know how you feel because he's your child butI work with SN kids and have worked with their mus/dads. Nothing I say can change the DX but maybe MN can help?
\XXXXX

Sunnysideup · 21/08/2006 19:01

lourobert, I'm SO sorry to hear how you're feeling but it's very understandable...I bet most people have felt like you do at some time. my DS doesn't have SN and I had not heard of williams, but I was so moved by your post, want to give you a hug.

I do hope that as time goes on you are able to enjoy him for who he is for more of the time...but I bet it's important to allow yourself to feel the way you do - it's like grieving for what you have 'lost'. I would say acknowledge that how you feel is totally normal and understandable. But maybe try to concentrate on the here and now on his birthday, enjoy him because he is who he is and enjoy your friends and family.

Original poster

lourobert · 21/08/2006 19:02

I live in Portsmouth. Ive totally distanced myself from friends with NT babies becasue it still hurts so much......!

Ive worked with sn kids for years but obviously nothing compared to it being your own lo..!

OP posts:

hermykne · 21/08/2006 19:26

lourobert i have some frineds in similar situatons, its like trying to turn your imagnation off wondering what if , and its impossible to do therefore enevitable you'll think stuff u feel u shouldnt.
you have had a very hard 10mths and if i was u i would seek out those in similar circumstances. because if u only see them for 20mins once a week/month i think you'll feel so much better.

jollymum · 21/08/2006 20:00

Hey, your friends are probably like me. If you tell them what's going on, the whys and whatevers, they'll understand and probably try to help/understand. Maybe they might make a mistake sometimes and say something inappropriate, but WTH. They're friends and your ds has to grow up with other kids whatever happens. Isn't it better he grows up with your friends' kids understanding that he's different/sn and needs help occasionally? So do shy kids, kids with disfiguerements etc etc. Your son needs friends that will be there for him and nowadays kids are more ready to help/learn/adjust to situations regarding their peers.Keep talking...xx

jollymum · 21/08/2006 21:23

Bumping for the night crowd

Pages · 23/08/2006 10:36

Hi Laurobert
Haven't had time to read the whole thread, but just to say that I felt the same on DS1's first birthday. In fact the little boy over the road who is the same age (and who I thought would be best friends with DS1 because us mums were pg together) came, and he was crawling around and into everything, pointing, waving, eating crisps. And DS1 was so obviously behind, just sitting there all floppy, unable to even hold a toy let alone feed himself.

But they do make progress and you will adapt yourself to the rate of progress and get excited at small things (I don't know if the comparing ever goes away, I still do it). DS1 didn't crawl until age 2 but now at nearly 4 he is running around all over the place, no longer needs piedros or ankle supports, is wearing normal shoes. He is very obviously still behind (still no speech) but what I am tryong to say is that things will happen for your DS. It is hard and it is slow but my understanding of WS is that children usually do everything, ie. walk, talk, etc but later. (Is that what you have been told?)

Pages · 23/08/2006 10:40

PS DS1 never played with toys either until again age 2 - now he is into everything and as for feeding hinmself we call him the vacuum cleaner, because he will now sit at a picnic rug and work his way through the lot.

Jimjams2 · 23/08/2006 12:15

I still find birthdays difficult (ds1 7 now), learned to go with the flow. And I completely understand that not playing with toys thing. Last xmas went to ToysRUs and couldn't see one single thing that ds1 would have been interested in.

Hope you have a lovely day anyway. DS1 does enjoy his birthdays now, its just me who is all over the place.....

norfolklisa · 23/08/2006 17:10

I know how you feel. My little boy Daniel is 17 months and very behind for his age. He has scoliosis so has to wear a horrible back brace, so sitting, crawling and walking will be some time coming. I too daydream of how things 'could' have been, but then he gives me a great big smile and I think of how far he has come! Try and let people know how you feel and I am sure they will be understanding. Big hugs to you and Louis.

Lisa

Original poster

lourobert · 24/08/2006 09:46

To all,

Thanks for replying. I have been told generally how ws grow up to become but my ds is one of a kind as his chromosome 7 is arranged differently also.....!

I enjoy every little step that louis takes and the longer he is seizure free the more he is starting to do.....I just have weak moments sometimes!!

my son goes to nursery so is surrounded by other children. I just cant help comparing. My 'bad' days are still there but they do rear their ugly head now and then esp as big milestones approach!!

OP posts:

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