Developmental disorders/learning disabilities/genetic syndromes & more support group

[sequeena]

Yeah he loves it she had a.good grip on his hips earlier whilst half rolling him over a peanut shaped gym ball he freaking loved it and she did the 'brushing' with him too and did it to me I felt all tingly!

 

[essie0828]

Lol! I love DDs tactile brush. She gets it and brings it to me when she wants to be "tickled" now. She will hand it to me and say "kickle mama". I've seen some kiddos that like deep pressure use weighted blankets and vests. Also seen OTs use a deep pressure roller that's sort of like a big padded rolling pin that the kiddos squeeze under and they love it. One little guy goes strraight for it every time he gets agitated at the rehab hospital. He's learned to go there to calm himself I think you will see a big reduction in his tantrums as he learns to calm himself with the OT. So excited for you guys!

 

[sequeena]

Oh we call that the mangler lol!! I'm hoping T will use it his therapist calls him.a tentative explorer xx

 

[essie0828]

Lmao! That's an appropriate name. First sight of it and I was like, WTH is THAT! Looks like what you would wring out laundry with It will definitely take some getting used to. I know I wouldn't crawl into it without being sure I could get out. It's intimidating! DD won't get in it but she's not a fan of deep pressure. She's a tickle and vibration kinda gal. Her z-vibe is her go to choice.

 

[RachA]

Glad T's therapy went well today Sequeena


Essie-just wanted to say wow! Considering your DD has issues eating she's a good weight E was weighed and measured today at an appointment: ages nearly 5yrs and is 105cm which is a little over 41inches. But she only weighs 31.9pounds. In so used to how she is but when I see how much others weigh it makes me realise E us just so tiny!

 

[essie0828]

Rach she was weighed in her full set of afos and shoes About a pound of that was braces and shoes but shes definitely been improving with her eating. She was 28 lbs with braces and shoes about 6 weeks ago. We've been working hard with her OT and Speech therapist on feeding as she started loosing and only wanting to drink a bottle. I noticed she had the tiniest fat roll on her lower tummy and was so proud. Don't get me wrong I don't want her to be an unhealthy weight but for kiddos with CP it's hard to put on weight. Seeing a tiny chubby belly makes mama relax some. . Wow E and DD are very close in size! Don't think E is too small though, my kiddo is really tall for her age. She's as tall as most 4yr olds.

 

[annanouska]

hi everyone it been about much as been poorly in hospital for a couple of weeks Im home now on the mend. It was hard as I'd never left Marcus and when I came home he wouldn't come near me hubby tried to bring him in to see me but he got too distressed. Things are back to normal now tho, he even gives me a kiss at times now

We are going through one of his phases where he seems a lot better and like everyone else, they don't last tho we have his autism assessment around jan apparently. There are also some abnormalities on his brain pattern but not heard back yet. He has sensory room this week and OT next week.

He's been a lot better with other children recently. Still stands off and keeps a distance but more tolerable.

He's started talking a little, he says no to pretty much anything he will also copy up and down and points with it. He seems to be babbling a bit more too

Hello to all the new people x

 

[bumpin2012]

We're still trucking along here. Ongoing SALT... nothing major. G loves his sister, and she's in love with him. She's a very different baby than G was, a bit of a diva...lol. definitely a girl! She seems to be on a 'normal' developmental course. She sits very sturdy in her bumbo chair, while G as the same age still flopped over, she can push herself up on her arms while on her belly, and G couldn't at this age. She's a chatterbox, constantly cooing and talking. G didn't babble until 15 months!

Hubby deployed last week, so we are all out of sorts adjusting to a new routine. Solo parenting is soooo not fun.

Glad to see everyone is doing well

 

[RachA]

Rach she was weighed in her full set of afos and shoes About a pound of that was braces and shoes but shes definitely been improving with her eating. She was 28 lbs with braces and shoes about 6 weeks ago. We've been working hard with her OT and Speech therapist on feeding as she started loosing and only wanting to drink a bottle. I noticed she had the tiniest fat roll on her lower tummy and was so proud. Don't get me wrong I don't want her to be an unhealthy weight but for kiddos with CP it's hard to put on weight. Seeing a tiny chubby belly makes mama relax some. . Wow E and DD are very close in size! Don't think E is too small though, my kiddo is really tall for her age. She's as tall as most 4yr olds.

Aw it's really great she is eating better and I get where you're coming from with the roll of day lol.
Esther is definitely much lighter than she should be although her height and weight are just about in proportion. I looked at the details on the charts and she's about 25th centile for height and 2nd for weight. If I could feed her up a bit more I would but she only eats if she wants too!!
What makes me laugh though is that when she was born she was on the 75th centile for her weight and somewhere between 50th and 75th for height. Both just dropped right off though.

 

[sequeena]

Oh ann I hope you are better now xxx

How is everyone?

Thomas has had an appointment explosion. He has 13 within the next 3 weeks. Crazy. We do however have a date for his wheelchair fitting. 2nd september!! And on the 1st he FINALLY sees his paediatrician!

I feel like he's had a mini developmental leap lately whether it's enough? I don't think so but we're heading in the right direction.

 

[Peanut78]

Hi all, I need to do a major catch up in here!!!

I just wanted to let you all know that we are on the cusp of some major life changes. We are moving to Kenya (I used to live there so am super excited to be going back!), I have found a sensational small and intimate school where I feel really confident will suit T.

Part of the reason behind the move is because of how bad we feel the school has been here for Theo, the other is OH got a major promotion

Will catch up and send a longer update later!

 

[emyandpotato]

That's amazing Peanut! I'm very jealous, what an amazing opportunity for you all!

 

[annanouska]

hi everyone!

Loosing the will a bit here, I'm still off sick and not allowed to drive until I see the neurologist but no appointment yet. I'm finding buses hard with him as its unpredictable

We had ot yesterday I found it the best appointment we have been to yet. He has been diagnosed with sensory processing disorder which explains a lot still waiting on the EEG and also his autism bits x

 

[emyandpotato]

I got Rory's full paediatric report the other day. About 6 pages. I feel a bit sick really. Loads of stuff was listed- wide gait, hyper-mobility in leg joints, spongey muscle tone, poor reflexes, difficulty with motor skills, obviously speech, global developmental delay, potential soft palate, potential chromosomal problems... Much more than I thought was wrong with him. I never thought he had a problem with fine motor skills. I didn't know anything about his muscle tone or reflexes. The thought of chromosome problems really scares me. He's just started speech therapy through nursery and she thinks he doesn't understand things, but I think he does? I dunno. I feel really shitty and like a total failure. I am convinced I did something in my pregnancy, like it was fumes from painting the nursery, or because I drunk before I found out at 6 weeks, or I didn't eat healthily enough or something. I just feel so shitty. I am so worried for his future, he already struggles making friends because he can't talk and it obviously upsets him. I don't want him always to be left out. Sorry for the ramble, I am feeling really down about it all and unsure about the tests he still has to come.

 

[annanouska]

its not your fault. It's very natural to blame yourself, your job is to protect your son and give him the best and with him struggling its an easy solution to blame ourselves. You are doing the best for him and giving him the best start possible.

It can seem very bleak written down and when there's more than you realised its harder so. He's still the same boy you just have a better understanding and information

Hopefully now with the issues getting identified it will help with getting him the support quicker. Regarding understanding, my son understands a lot more at home than nursery, he gets too distracted I think.

Hope everyone is well, we have started epilepsy meds now following his eegs. His sleep has improved like nothing I thought possible. What I thought was night terrors were seizures he sleeps through at the moment buts never know. We have an MRI soon to check for anything causing the epilepsy or damage to it x

 

[Peanut78]

I got Rory's full paediatric report the other day. About 6 pages. I feel a bit sick really. Loads of stuff was listed- wide gait, hyper-mobility in leg joints, spongey muscle tone, poor reflexes, difficulty with motor skills, obviously speech, global developmental delay, potential soft palate, potential chromosomal problems... Much more than I thought was wrong with him. I never thought he had a problem with fine motor skills. I didn't know anything about his muscle tone or reflexes. The thought of chromosome problems really scares me. He's just started speech therapy through nursery and she thinks he doesn't understand things, but I think he does? I dunno. I feel really shitty and like a total failure. I am convinced I did something in my pregnancy, like it was fumes from painting the nursery, or because I drunk before I found out at 6 weeks, or I didn't eat healthily enough or something. I just feel so shitty. I am so worried for his future, he already struggles making friends because he can't talk and it obviously upsets him. I don't want him always to be left out. Sorry for the ramble, I am feeling really down about it all and unsure about the tests he still has to come.

Emy, massive, massive hugs

I know every single thought and emotion you are describing so well. It's like being punched in the gut receiving those reports. Sometimes they literally made me feel like I couldn't see clearly, my heart was pounding and my head spinning. You are NOT a failure!!!

If he's only just started speech therapy - it would (in my opinion) be very early days to make any assumption on his level of understanding. This can take time for the therapist and your son to build rapport. My son is not an "on demand" person and behaved very differently from the first few sessions with a new therapist to one that he was accustomed to and enjoyed working with.

Annanouska is very right - these things can sound much more bleak and "condemning" than what they necessarily are in reality. Some things that have sounded awful and shocking to me, were actually not so bad in the grand scheme of things once I had a chance to "unpack" what it was and meant with a therapist (i.e. OT, ST etc.). Now you are armed with more information to get more help for your son.

Annanouska, great the meds are helping

 

[emyandpotato]

Thanks girls I think just seeing it all written down it's finally a definite issue instead of me being paranoid, or him just being a tiny bit behind. I am getting so worried about his future.

 

[sequeena]

It's very hard getting reports and very easy to blame yourself. Please don't xxx

Ann I'm glad lo is sleeping but how awful that his terrors were seizures the medication seems to be controlling it thoigh fx it keeps working

Thomas has his wheelchair

 

[RachA]

Getting the written reports is awful. I think that's always been the worst times for me. It always looks so stark. I know it's not easy to do but you really shouldn't blame yourself.


Peanut-how exciting for you.


We've had a good summer-we got back for a family holiday with a draft statement offering E 27 hours per week 1:1 in school. We were amazed as we really thought we were going to have to fight for the statement. But even before the school knew about the 27 hours they'd already employed someone full time to work along side E
We then got her next lot of speech therapy through so that's also one less thing to fight for.
And she's started school and looks to of settled in well. That's bit really a surprise though as she's a fairly social person. What's going to be harder is when they start doing phonics etc as she just can't retain that type of info at the moment.

 

[sequeena]

So my HV has now washed her hands of T and keeps saying ring the disability team if only his disability hv was easy to get hold of! Sigh

Thomas had pre school boosters today so was very upset and had his dukmy
Some busy body told me to take it out of his mouth. Why is there always one.