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

[Peanut78]

thanks peanut. He basically has "unexplained white matter" that's all I know so far like white dots showing on scan. His whole journey started about 13/14 months tho there were signs before then ( a lot of them really) but he regressed massively then, lost all his speech , play regressed, social regression etc. that's when they went down the autism route the whole epilepsy etc has come as a tangent! He has improved hugely now tho, he's not the same as other x2 year olds but he is appears less different to the untrained observer.

Since we went on medication tho he has developed 100 times more than he ever had. He's still behind but every day he does something a little bit new or better.

Your reply means a lot, may not be the same thing but gives hope that others have been given such scary suggestions too and got through it .

Just had a party at special needs play group. He had great fun, didn't join in, wouldn't eat with them ( faced the wall in corner eating like some sort of Oliver Twist homage!) but he had a great dance and giggle and only a minor me.tdowm at the end xxx

Thanks Anna - these scary situations and trials and tribulations are quite something - huh

I mentioned the myelination as this is often also referred to as the "white matter" in the brain (the other is the "grey matter").

It's so fantastic to ear how well your son is getting on We are going to a special needs play group next week as well and I'm excited

 

[sequeena]

Love this

https://sensoryprocessing.yolasite.com/spd-is--spd-is-not.php

No new news on the EEG front. Not surprising though. Hopefully it won't be long.

We want to get to a SEN playgroup too next week, I can't wait!

 

[Thurinius]

My son had his first one to one speech therapy this week and it was a real success. We were worried how the guy would get his attention, generally when strangers come to the house he totally ignores them. But we needn't worried as he brought a box of tricks with him including a drum, bubbles and an iPad. He was just assessing him this visit but what came out of various matching games and other stuff is that my ds comprehension is very good, he understands and can follow the rules of a game for instance. So the therapist is going to work on his 'expression' and presumably getting him to string more words together.
Later this month we are looking at a new nursery and meeting their special needs coordinator to discuss, very kindly the manager of ds's playgroup is coming along to to make sure we ask the right questions and we are all sure he will get the one to one help he needs.
So all feeling a bit more positive now.

 

[Reid]

My son had his first one to one speech therapy this week and it was a real success. We were worried how the guy would get his attention, generally when strangers come to the house he totally ignores them. But we needn't worried as he brought a box of tricks with him including a drum, bubbles and an iPad. He was just assessing him this visit but what came out of various matching games and other stuff is that my ds comprehension is very good, he understands and can follow the rules of a game for instance. So the therapist is going to work on his 'expression' and presumably getting him to string more words together.
Later this month we are looking at a new nursery and meeting their special needs coordinator to discuss, very kindly the manager of ds's playgroup is coming along to to make sure we ask the right questions and we are all sure he will get the one to one help he needs.
So all feeling a bit more positive now.

That's brilliant well done to him you must be mega proud xx

 

[Thurinius]

That's brilliant well done to him you must be mega proud xx

I am very happy. His issues seem to be in a group setting. One to one he is quite communicative and expressive. But in a group he needs adult attention to get him to involve himself in anything. It doesn't naturally occur to him to try things but once he's seen an adult do something he'll join in. Also his play is very far behind his peers. He doesn't do much imaginative play, none at all outside the home. He seems to just enjoy taking things in and out of play kitchens etc.

 

[annanouska]

he sounds soooo much like my son. The ADOS wound me up as it was him and the slt woman doing the assessment, that is a strength for him! He too is worse in groups he needs an adult to help keep him e gaged. Funny as we had a chat about this yesterday and it is apparently because as an adult I know what he wants or how to engage him, a child doesn't,a child won't sit for ages lining cars up with him etc that's apparently one of the reasons he struggles with child interaction they don't "get" him.

The appointment sound s really positive. All great signs . My son is behind in play but much improved. He too likes to take things in and out or pour water for ages x

 

[sequeena]

Fab appointment Thurinius. I love it when things turn out better than expected

Went shopping with T by myself today. I did not expect the shopping centre to be so busy and Thomas lost it. He kept head butting walls or laying on the floor and putting his head in his hands so I had to strap him in his wheelchair. Not the best shopping experience I've ever had to be honest.

 

[Thurinius]

Annanouska exactly, my son thrives in one to one. So much so that the therapist was doubting his autism since he ws really good at this one iPad game where he had to find treasure. The therapist said autistic kids typically think the treasure stays in the same place each game, that things are static whereas my son was actively searching for it.
Had to dash the hopes of my oh who thought maybe he's not got asd after all by pointing out it's when he's with other kids he's age that it's really apparent to all the other health providers etc.

 

[RachA]

Children with issues like ours find it easier in a 1:1 setting. Esther always takes a back seat when with her peers. She isn't shy at all which is the general assumption of people when they see her like this.
As others said it's partly because an adults knows what they want and gets them so it's much easier for the child to respond. What you do find is that as children get older they too can preempt what the other child wants. Esther is doing well at school because her peers are now old enough to play with her rather than along side and they ignore the fact she isn't talking like them.

 

[annanouska]

He may not have autism or he may do. My slt said a lot of very complex language disorders can cause autistic like traits in a child. The main thing Is to get the right support and go from there. Some days I feel Marcus is deff asd then other days I sit and thig. Well maybe he isn't. Right now I'm honestly not bothered I just ant to know what's going on with this scan issue

Halloween was hilarious i should have videod it ...he coped with the trick or treaters and become super regiments to the point the door went he ran to it going grrrrr open door, gave each child a sweet ( they couldn't pick their own) then practically slammed door In face put the pot back ad sat own. This went on the whole night. He was really happy so I left him to it, think it bewildered the kids a bit but I don't care meant he was involved

He had a meltdown at the end I think it got too much, he threw a mars bar at this trick or treated lay on floor head in hands crying. I think I felt more sorry for the poor trick or treater. I just muttered oh he's tired! He was in fact as went to bed lol x

 

[Boo44]

Ohh that's gorgeous I just got a mental image of M doing that with the trick or treaters - classic!!

 

[nicki01]

Anna that's brilliant! I love that he got involved.

We have been having a busy time!
Lots of appointments, then a sickness bug that Charlie and her dad got, Charlie was a trooper! She was sick and got on with it, still bouncing around like mad, my other half on the other hand, was sick all over my hallway! I'm still trying to get the stains out a week later!
Now tori has Scarlett fever, she suffered for 8 days as the doc misdiagnosed her having an allergic reaction, eventually needing an emergency doc we got some antibiotics so she is on the mend.
Now I have been potty training Charlie for 2 days (we have tried so many times before with no success) she has been doing great, no accidents but only if she is naked from the waist down. If I put trousers on her she wets herself.
Is this the first steps?? I've not done this before?!!

 

[Reid]

Anna that's brilliant! I love that he got involved.

We have been having a busy time!
Lots of appointments, then a sickness bug that Charlie and her dad got, Charlie was a trooper! She was sick and got on with it, still bouncing around like mad, my other half on the other hand, was sick all over my hallway! I'm still trying to get the stains out a week later!
Now tori has Scarlett fever, she suffered for 8 days as the doc misdiagnosed her having an allergic reaction, eventually needing an emergency doc we got some antibiotics so she is on the mend.
Now I have been potty training Charlie for 2 days (we have tried so many times before with no success) she has been doing great, no accidents but only if she is naked from the waist down. If I put trousers on her she wets herself.
Is this the first steps?? I've not done this before?!!

Definitely the 1st steps that's how my son started off I guess the pants and pull ups feel the same just took him a wee while to get the hang of it he can wear pants fine now. Xx

 

[DHime]

Hope you ladies are doing well. Sorry have been out. You seem to all be just as busy. We had a fun staycation at the local picu when my son caught a cold. Aft that he was diagnosed with asthma. This week, it was autism spectrum.
We have been swamped. How is everyone today?

 

[sequeena]

Oh ladies I've had such a tough day

This morning I started sleep clinic. 6 other parents were there. All the kids have autism apart from Thomas. The disability HV and nurse went through sleep patterns, importance of sleep, sleep routines etc. All good. None of the other children have SPD or sensory issues to the degree T has (his meltdowns, self harm, constant need to touch me etc). The HV and nurse had no idea how to combat his SPD?? They will speak to OT but now I'm trying to implement this new routine when it really doesn't work for T. I'm only doing it as I have to (if it doesn't work he can have melatonin). Thomas has spent the day screaming at me, dropping to the floor, head butting, throwing things at me etc he's been a nightmare and a real embarrassment when we're out. I know he doesn't understand and it's not his fault but I'm so frustrated!!!!

This afternoon I had the LEA officer here. They've gone to panel and have decided Thomas should be assessed for a statement so she gave me all the paperwork and it's just so much to take in.

I've not slept and I've not eaten so I've ordered a takeaway. I feel terrible but I've cooked every night this week so far. Thomas won't eat - part of his new routine is to fecking eat before bed!!!! I feel like such a failure already

 

[Reid]

Oh ladies I've had such a tough day

This morning I started sleep clinic. 6 other parents were there. All the kids have autism apart from Thomas. The disability HV and nurse went through sleep patterns, importance of sleep, sleep routines etc. All good. None of the other children have SPD or sensory issues to the degree T has (his meltdowns, self harm, constant need to touch me etc). The HV and nurse had no idea how to combat his SPD?? They will speak to OT but now I'm trying to implement this new routine when it really doesn't work for T. I'm only doing it as I have to (if it doesn't work he can have melatonin). Thomas has spent the day screaming at me, dropping to the floor, head butting, throwing things at me etc he's been a nightmare and a real embarrassment when we're out. I know he doesn't understand and it's not his fault but I'm so frustrated!!!!

This afternoon I had the LEA officer here. They've gone to panel and have decided Thomas should be assessed for a statement so she gave me all the paperwork and it's just so much to take in.

I've not slept and I've not eaten so I've ordered a takeaway. I feel terrible but I've cooked every night this week so far. Thomas won't eat - part of his new routine is to fecking eat before bed!!!! I feel like such a failure already

Aww hun you really have had a day of it. Your not a failure at all I've read a lot of your posts on Thomas and you do a bloody fantastic job as his mother he's very lucky to have you. I no its easy for me to say but don't stress with the new routine give it time tomorrow's a new day and you can try again
I think your take away is more than deserved I hope you can get some time to sit and enjoy it
Big hugs to you and Thomas to xxx

 

[Thurinius]

Oh ladies I've had such a tough day

This morning I started sleep clinic. 6 other parents were there. All the kids have autism apart from Thomas. The disability HV and nurse went through sleep patterns, importance of sleep, sleep routines etc. All good. None of the other children have SPD or sensory issues to the degree T has (his meltdowns, self harm, constant need to touch me etc). The HV and nurse had no idea how to combat his SPD?? They will speak to OT but now I'm trying to implement this new routine when it really doesn't work for T. I'm only doing it as I have to (if it doesn't work he can have melatonin). Thomas has spent the day screaming at me, dropping to the floor, head butting, throwing things at me etc he's been a nightmare and a real embarrassment when we're out. I know he doesn't understand and it's not his fault but I'm so frustrated!!!!

This afternoon I had the LEA officer here. They've gone to panel and have decided Thomas should be assessed for a statement so she gave me all the paperwork and it's just so much to take in.

I've not slept and I've not eaten so I've ordered a takeaway. I feel terrible but I've cooked every night this week so far. Thomas won't eat - part of his new routine is to fecking eat before bed!!!! I feel like such a failure already

Big hugs to you. Hope you enjoyed your well deserved takeaway. And in no way are you a failure

 

[annanouska]

I've had way too many take always recently as I can't juggle him and appointments work house and everything. We are on go,Ida nw tow weeks ill get to it after.

The sleep clinic sounds a pain even kids with ASD are all different so its hard in a group setting. Stick with it and just play the game for ur melatonin, only thing one at our group gets to sleep ok on melatonin but can't stay asleep. I really think as part of this sleep stuff u need to chase up your eegs and mris. I know Thomas sleeps far worse than Marcus ever did but if u could have some relief like we have now he's on his tegretol it would help massively. I know u isn't even know if it is epilepsy but he's a little boy who can't switch off and wind down its worth running them jut to see if there's any brain patters causing or aggravating. Is rubbish how lo g they are taking

Had a letter today the new specialist has looked at the white matter changes on MRI also is not sure so requested loads of random bloods and urine and review in December. Can't decide if them not begin sure is a good or bad thing

W have team review in December, I think he's not going to get his ASD diagnosis the epilepsy meds have helped so much but I've heard they do have an impact even in non epilepsy people so going to raise that.

The reviews...do u have to take the kiddies? I'd say not but can't reach secretary to ask. There's going to be lots of ppl there he won't cope and then I won't be able to ask stuff

 

[sequeena]

Thanks everyone. We had a bad night but that's nothing new. I wasn't expecting an overnight miracle I'm just stressed is all. I don't think even the HV and nurse expects massive progress.

Sean has taken T out for a haircut and no doubt has popped into SIL and BIL's. I'm stressing now as I wanted to start the bedtime routine by now but they're not back. I feel like I'm the only one doing this he's not even read the sleep stuff I brought home yesterday

annanouska I have to go to the GP on Monday to sort out a referral for the EEG since the Paed won't be doing it now.

Poor Marcus more bloods and such it's just not fair is it

As for the review if you can leave him with someone I would. I really doubt they will want to specifically see him as it'll be lots of professionals talking about him and what steps they want to take. And as you say he won't cope it won't be fair on him

 

[sequeena]

Thomas still won't bloody eat either I can only hope he'll eat food when he gets home (whenever that is!!!!)