Play or activities for 13mo with developmental delay

[Tinymrscollings]

Hi, I'm hoping someone can give me some advice about what to do with my 13 month old little boy.

He has infantile spasms for which they are trying to find the cause and a development delay of around 6 months. He sits pretty well but can't crawl, pull up or walk and his playing 'skills' are a bit limited because he doesn't have full control of his arms and hands. He used to love his walker but the OT has told us to stop using it.

I have given up work to care for him but the idea of finding things to do with him all day is really daunting. I need ideas for toys, games etc that will stimulate and interest him. I feel uncomfortable taking him to groups. He's so far behind and it makes me sad to explain to people that he isn't like their children - they never know what to say. I can see in their faces that they're so glad they aren't me and having to deal with all this

Does anyone have any recommendations for activities I can do to help him along and keep him stimulated? He spends a lot of time on his tummy on the floor and just 'being' but I feel I should be doing more to engage him.

any ideas?

Mrs Collings

Been there. Don't worry about the people.

I know it feels awkward going to groups and having to explain. See if you find a group which has OT input locally. Your HV might help.

Also, give him lots of messy play. All types of sensory activities - water, sand, foam etc.

If you don't already massage him, I would suggest that too. Twice a day if possible.

Also, try and find a Gymboree/tumble tots/soft play area around where you live. The more he uses his muscles the better it is.

All the bet

Hello Tiny, and welcome to the board.

Sorry can't really help but there are posters around who will be able to, so bumping for you.

Hasn't the OT made any recommendations? Do you have Portage? They are the best people to advise, they will come to your home and teach you ways to bring on your DS through play.

we had a pre school teacher who came out from my son being 3 months, usually called portage now, can you get someone like that to visit, your health visitor may know contact details.

we also had intensive physio from 3 months.

It all entailed putting him in different positions and enticing him to move. roll, reach etc.

Cause and effect toys and building fine and gross motor skills, trying to pick up raisons or rice krispies, posting things, building blocks

Sorry it's all I can think of, but if I think of more will let you know, I also think salondon's advice is good.

HTH x

Hi, as others have mentioned Portage can really help with showing you play activities to help promote development. Other things I did when ds was little was swimming, really good for those little muscles....even better if you have a hydro-therapy pool near you (if you have a physio they may know of one locally) Ds physio gave me a list of exercises I could do in the pool with him.

salandon mentioned massage...we also did this with ds, was a nice way to start and finish the day.

If you have a children's centre nearby they may hold play sessions for children with special needs or know of one that does. Ds used to go to one run by the Portage service.

Swimming was alway a big hit for my boy, and I used to go to those mother-and-baby swim lessons in the nice, warm baby pool. Just keep talking to those other mums, explain in matter of fact terms what's up, don't hide away as there are kind people out there too, as well as the knobheads!

Thank you all. I am waiting for our first session with portage and I hope they'll be able to help. He loves swimming and we go once a week. I used to massage him when he was tiny so I'll start that again too.

I just feel so on my own with it all - I have some great friends who I met at NCT. They've known him since he was tiny and understand his problems but I find it really hard to be with them and see their babies grow and develop and the happiness that it brings them. I'm horribly jealous of them for how easily it all comes and how much they take it for granted. I never thought he'd be anything less than perfect and that I'd have to live with this awful worry about his future and ours. We're always waiting for the next bad news (have an appointment with our specialist and a geneticist in 3 weeks so am assuming they've found something wrong but don't know what). I'm trying to do positive things to help him rather than wallowing in the sadness but it's so hard.

I'm hoping that when we have a name for what's wrong with him I can put aside what I'd dreamt his life would be like and come to terms with the reality of it. Now I've given up work my last piece of life as I knew it has gone too.

I'll talk to my hv about groups for children with SN. Maybe I'd feel more comfortable in that environment. I'm not ashamed of him, he's beautiful and loving and funny and I wouldn't swap him for anything but I'm tired of explaining why he doesn't move or play like the others.

It's really hard.

It is really hard. I have a DD who is 4.2 and is delayed in many areas. Her speech is very unclear and she has severely delayed gross and fine motor skills.

I think we have all been there where our children are different and it makes some situations really hard.

I would say to keep up with your friends. I have some very good friends who adore my DD like I do and she is accepted as one of the gang of kids. I have other friends who I now see by myself and our kids don't mix as I don't think they see that their kids 'get anything' from my DD.

There have been times when I have wanted to hide away and hide DD away, but I have found that they more you go somewhere, the less people notice the difference. And once you explain it once then you don't need to do it again. I just say that DD has a speech delay. It is a lot more than that actually, but people don't need to know the ins and outs of it.

Also - people may feel a bit awkward at first (and yes are probably grateful it's not them :( ) but actually they are more concerned with their own children that what yours is or isn't doing.

It is very isolating having a child with SN and I think it is really important that we don't keep our world too small and isolate ourselves further.

:)

hello tiny
Lots of great ideas here. Echo that portage will be great as they will support you to support your child.
They will know about any SN playgroups.
At this age playgroups are more for the parents than the kids.
Don't isolate yourself - get out to museums, parks, art galleries and cafes if you can.
A book always recommended for play activities whatever the age or stage is stanley greenspan's the special needs child. Sorry can't link as on my phone.

Hugs

Hi, my DS is also undiagnosed & is 18 months - so just a few months ahead of you in all this!

It's incredibly hard being around other children of a similar age - I promise this does get a little easier as time goes on.

My DS also cannot crawl or pull to stand. I try to pick up toys from second hand shops as I never know what will be a hit. I go for stuff with big buttons to aim for.

As your DS is undiagnosed - have u looked at joining SWAN UK? There's a very active (closed and confidential) Facebook group with lots of children in this age range.

It is also worth seeing if any of your nearby children's centres have a special needs session. I know its hard to classify your child so concretely - but I have found these sessions amazing (I travel miles to get to one!) Just meeting parents who get it was amazing. Plus some do activities like music therapy or sensory stuff.

Thank you all so much for your advice. I'm usually pretty positive about it all but had a bit of a down day. He fed himself a load of sweet potato chips after MONTHS of trying this afternoon, which is a much needed breakthrough! I'll definitely look up SWAN, I've heard of them but I don't know much more. Thanks again all for your advice

smiles could you point me in the direction of the swan fb group?

It is a rollercoaster emotionally. I talked to bored my mum and friends as much as I could get away with but they were too invested in trying to make me feel better by minimising my fears.

I eventually got some counselling through my work support scheme as I was really struggling. I wish I'd got help earlier.

Hi,
I have a daughter who is two and a half now, she also has developmental delay amongst other problems as she has a genetic disorder. I used to put her in a door bouncer for short periods of time which she loved, I also got a bumbo with a play tray and put her up in the kitchen with me whilst I baked or whatever and talked and sang to her, gave her kitcheny things to play with, as much as possible just try to have a normal day whilst keeping your baby near, they enjoy the closeness and learn a lot from watching. It took a while but now I don't care what people may be thinking when I take my daughter to baby groups. If they ask I will tell them as brightly as I can but I don't offer information otherwise.
It all gets easier, I now don't really see my daughters disabilities, she is just who she is, does what she does in her own time and brings a lot of joy!
:-)

Hi Tiny that sounds tough, but he is making progress - so well done all of you!
My DD has severe developmental delay,she's now 2. She also had poor arm and hand control. We found the following toys good for her:

www.amazon.co.uk/Tolo-T89205-Pop-Up-Teddies/dp/B00005UFCE
I guide her hand to the buttons - it's a great cause and effect style toy.
ELC toddle along tortoise - she does to crawl after it but reaches for it to restart it.
Vtech penguin. www.amazon.co.uk/VTech-80-78203-Roly-Poly-Penguin/dp/B0012X9Q2M
This was brilliant for DD. a slight nudge and it sings and wobbles, it kept her entertained for hours.
Click clack cars: www.amazon.co.uk/Legler-7558-Click-Clack-Racetrack/dp/B000WH4NCC/ref=sr_1_1?ie=UTF8&qid=1361799307&sr=8-1
This was one we played together. She would indicate when to release the car ( ready steady go!) then we would do hand over hand to pace the cars. She now does it herself.
Vtech mobile phone, fairy tale book and crawl ball. They are all noisy but give instant feedback on small touches.
These are the things we found good for DD. Portage as others mentioned was useful too.
We had a local toy library we could use to try out toys before purchasing- including SN toys. Ask portage about this service in your area.
Take care. X

Thank you all so much for your encouragement and suggestions. Toots, those toys look great. Anything with noises and lights really pleases him so i'll be ebaying frantically!

If u search for SWAN UK within FB it should come up. It's a closed group so will need to send request to join.

They also have a website (don't know if I can put up a link here but should come up on google) if I go to contact us and send them an e-mail they will send u a membership form (it's free) then u will get newsletters etc.