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

[sequeena]

How frustrating. Have you managed to find anything?

Thomas is struggling with school germs at the minute. In the last few weeks he has had 2 colds and a sickness bug. He went back to school today but is of course very tired. He is still snotty too.

I had a phonecall from SALT she has met Thomas a few times now. He still has pretty poor attention but he will get there. He has some sounds like buh and kuh but a lot he gets wrong or can't say. She will work with him for 6 weeks then ring me to tell me How he's doing.

He has an eye appointment on thursday. Nothing major just a check up.

He is zooming round on his 3 wheeled scooter I am so impressed. We Have taken it out a few times and he is doing really well.

 

[DonnaBallona]

Hi girls! Not sure if iv posted in here before but wanted to say Hi.

I'm mum to 3, my youngest has a degenerative genetic disease called mitochondrial disease, specifically complex 1- neurotransmitter disorder. He has had a million tests, and a million appts to confirm this and we have a LOT of input from various people. He's a bit of a mystery to a lot of professionals as mito is rarely seen (not helpful!)
Jude has minor developmental delays, behaviour issues, dystonia, weak swallow so is tube fed, and chronic lung disease.
Just wanted to stop by and say Hi :wave:

 

[sequeena]

Resurrecting this.... not sure if anyone is around... I'm really struggling at the moment

 

[MummyMana]

Hey everyone I think I posted in here before when we were just at the "things aren't quite right" stage. Well an update - my daughter still doesn't have an official diagnosis but the good news is that it's only because she isn't old enough to be diagnosed where we are - she is strongly suspected to have ADHD and possibly ODD and is also on the waiting list for the final part of an ASD assessment (which can take two years), this is great because even though she doesn't have the official diagnosis we know what we are dealing with, but it hasn't made things any better... She's seen the adhd nurse who has said she can tell from a mile off that she has ADHD but I'm already doing everything she would suggest :/

 

[lusterleaf]

Hi! I am not sure if I have ever seen this thread before. I have a 4 year old non verbal ASD son, he is considered lower functioning. I have joined special needs parent facebook groups but not really finding the type of "support group" that I was looking for. I feel like sometimes I will ask questions on there that go unanswered. I did meet a few moms in person from there that lived local to me, but I feel like I can't relate to them, as their kids are higher functioning- speaking, toilet trained, very bright.

Anyway I just wanted to let whoever out there know that has a special needs child that you are not alone. Some days I feel alone, some days I ask why me, other days I feel bad for asking why me... and I am always questioning, am I doing enough?

Anyway if anyone needs to, feel free to vent, I will lend an ear!

 

[alibaba24]

Hi sequeena are you ok

 

[sequeena]

Hi mummymana. I remember you you're in the same boat we are. No diagnosis. ADHD where I am isn't diagnosed until about 7 years old.

Hi lusterleaf. I hope you can find support here. My son is potty trained in the day now but has a learning disability and at almost 5.5 he's still functioning on a 3 year old level. I find it difficult to relate to people too.

Hi alibaba how are you?

I'm just struggling in general right now. Thomas still has no diagnosis. We're part of a genetic trial that tests me, my husband and Thomas to see if there is a genetic condition. The geneticist said there is one and it definitely comes from my side of the family but they can't figure it out. He's just had more bloods and urine taken to test for other rare conditions.

He's doing well in school. He still has a full EHCP. His teacher has been having issues with him as he doesn't want to do any work. He's nowhere near reading or doing maths but they're working on letters and counting. He still goes to the nursery to play as it's integration and he's on their 'mental' level.

He has horrific anxiety. Especially around the bath and shower. We're trying to find solutions but nothing seems to be helping. He grinds his teeth terrible in his sleep and he sleep walks. He still doesn't sleep well and he's just been referred for a sleep study as we think he may have sleep apnoea. He's still suffering with glue ear so we're back and forth to ENT. The right side has glue ear which just cleared up (but he's had this since before he was 2). His left ear is full of wax so the doctor can't see in it yet and Thomas won't let him suction it.

After his blood and urine results come back the paediatrician wants to discharge him from the service. There's nothing they can do and now I feel so alone. He's been referred to a service because of his behaviour.

I don't think this time of year is helping. We can't do anything festive it's too much for Thomas. Everyone is posting on facebook about all the lovely things they're doing and that they can't wait for the school holidays. Thomas breaks up tomorrow and I'm dreading it. Sean is working every night until Christmas Eve. All my family are going to be busy doing festive stuff. I'm just trying to get through the day.

 

[MummyMana]

I think it's 6 or 7 here as well, although the adhd nurse did say in Gin's case she could get a diagnosis as early as 5 depending on how co operative the school is (she would do it herself but she is due to retire before then) .

It sounds like you're really facing a lot at the moment :/ I can't offer much help, but with the bath thing - Imogen went though a stage where she was REALLY opposed to the shower. She was also going through a "dog" phase though so I told her we were going to "play doggy grooming" and managed to trick her into having a shower by pretending she was a dog and it was a grooming parlour (we have a wet room with fold down chair) do you think he would respond to something like that?

 

[lusterleaf]

sequeena I am sorry it seems like there is a lot going on. Are you able to see someone on your own for an evaluation, such as, a developmental pediatrician, or a neurologist? I am in the US and I took my son to a developmental pediatrician to test for ADHD on top of his autism and they had me fill out questionnaires- both me and my sons teacher filled one out. They will not medicate him since he is 4 but was good to have the evaluation at least (though he doesn't have ADHD he was diagnosed with hyperkinetic disorder which sounds similar).

 

[alibaba24]

Sequeena I am sorry that so much is going on. It sounds really Isolating and I also would be struggling. Especially given they want to discharge him you must feel completely hopeless My heart really goes out to you. Do you have anyone who will babysit for you so you and Sean could even go out for a night over the christmas period ? I am hoping the new service you have been referred to can bring some type of help in .xx

 

[Eve]

 

[sequeena]

Oh wow it's nearly been a year. Is anyone still around? How are you all?

 

[Peanut78]

I'm here!

 

[sequeena]

Hi peanut I'd love to start using this group again.

 

[Phantom]

I'm not sure if I've ever posted here. But my son was diagnosed with high functioning asd this August. I just got a call from his school on Friday about meeting with them to set up some special help for him. I cried when they told me. They said he is very bright so he doesn't need any academic assistance. He just keeps to himself at recess, doesn't have conversations with the other kids or participate in groups.

 

[sequeena]

Hi phantom how are you feeling? Was the diagnosis a shock? It's great that school are going to help. That's half the battle I think. Thomas is very sociable but doesn't often play with other children on break because (in his own words) he likes to play his motorbike game.

 

[Damita]

I'm here �� lilith has been diagnosed with adhd and high functioning autism.

Charlie well he's a long old list hypotonia asd SPD non verbal non eating GDD mentally 12 months old - he's 3 and half now starts school next year ahhhh

 

[Peanut78]

Hi everyone, big hugs Phantom - it's tough to hear.

Damita

I'll post an update from our side in the coming days (major work deadline till Thursday ).

Just wanted to say - I would also love to be able to use this group more again

 

[sequeena]

I'm here �� lilith has been diagnosed with adhd and high functioning autism.

Charlie well he's a long old list hypotonia asd SPD non verbal non eating GDD mentally 12 months old - he's 3 and half now starts school next year ahhhh

have you started the statement process? I was scared for Thomas to start school and refused to send him until he had one in place.

Good luck for you work deadline peanut

 

[sequeena]

So a brief run down of what's going on with Thomas.

After almost 5 years of recurring ear infections Thomas finally has hearing aids and grommet surgery on November 15th. I'm dreading it. He's not had surgery since he was 2 and it was a really traumatic experience.

We still have no full diagnosis for him but we have been on a study for the last year so hopefully there will be an answer soon. The study has been doing exome sequencing on all 3 of us so they should (fingers crossed) find something.

He still doesn't sleep well so I'm doing sleep clinic again as it's the only way to possibly get melatonin. He's calling me a liar though as the last 2 nights he's slept well

He has a speech disorder now rather than a speech delay and has been receiving speech therapy in school for the past 2 years. He's come on so much. When he first started school he couldn't say his name. His speech is vastly different to other 6 year olds. I'd say he is still speaking at a 3 year old level.

The good news is he's doing well in school. He's not in any mainstream classes (he's in a unit attached to mainstream) but he's progressing at his own pace. He's even started to read. I'm so proud of him. He can ride a 3 wheeled scooter and a bike with stabilisers. He's doing so much more than we thought he would.

The hardest part is watching him interact with other children. The majority ignore him or tell him to go away. Some have even hit him (I go into apeshit mode at that point). It's because he speaks differently and can't play like other children. It breaks my heart and I'm starting to really dislike other children as awful as that sounds. Thomas is not violent he doesn't push or shout. He just gets too close and doesn't understand social situations. He's so sweet I hate seeing him rejected. I don't want him to grow up being the outcast, being bullied because he's different thankfully at school that doesn't happen.

He's grown up so much and is super tall.