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

[RachA]

Hi Lynne-is there no say they can apply for funding to offer 1:1 support for him?
With Esther, she started at the pre-school at 3years. By the time she'd been there for 4 months they had a good amount of 'proof' that she needed more support (they already knew she had issues but not how much if would affect her). It took them another few weeks to get the support into place. At the time if applying she just did 2 days of 3 hours each so they got funding for 6 hours a week for her. However once we upped her hours the preschool still gave her the 1:1 support for the whole time she was there.
If the pre-school aren't willing to do the 1:1 then I would look else where. He really needs people that are trained properly to help him otherwise he won't get any benefit from going.

Funny talking about reading with them-Esther loves books but isn't great when u read to her. However if my dad or OH's dad read to her then she loves it.

 

[Reid]

Hi Lynne-is there no say they can apply for funding to offer 1:1 support for him?
With Esther, she started at the pre-school at 3years. By the time she'd been there for 4 months they had a good amount of 'proof' that she needed more support (they already knew she had issues but not how much if would affect her). It took them another few weeks to get the support into place. At the time if applying she just did 2 days of 3 hours each so they got funding for 6 hours a week for her. However once we upped her hours the preschool still gave her the 1:1 support for the whole time she was there.
If the pre-school aren't willing to do the 1:1 then I would look else where. He really needs people that are trained properly to help him otherwise he won't get any benefit from going.

Funny talking about reading with them-Esther loves books but isn't great when u read to her. However if my dad or OH's dad read to her then she loves it.

I asked about getting extra support at the nursery he's at when I was at that meeting they said it isn't possible as the can't get the funding for it. Xx

 

[RachA]

That's a shame. I'm assuming it's because it's a different council maybe, I don't know.
It will definitely be beneficial for him to be in a small group though. Esther was technically 1:1 but there was another girl there with autism plus 2 others with minor speech issues so done days she was 1:1 and others 1:2 depending in who was in.

 

[sequeena]

See if you can find out about a charity that provides funding. In wales we have o gam I gam and when T was at nursery o gam I gam funded a 1:1 support worker for him.

Why am I up at 1.30am when Thomas has been asleep since 10pm??? Well I woke to what smelled like very strong urine. Wtf. Had a feel of T's nappy dry as a bone. Had a quick look using my phone as a light couldn't see anything. Smell bugging the hell out of me. I decided to change his nappy anyway and thank god I did he'd done a ninja poo. His bum was clean but the poo had gone to the side of the nappy so when I looked in I couldn't see it. He's all clean and still asleep but I'm still wide awake and need to be up at 6am.

 

[annanouska]

I feel very lucky with how good our nursery are being for us. He doesn't have 1 to 1 just yet but they spend a lot of time encouraging him and involving him. Tbh he only goes 2 days and I spend the other 5 with lots of therapy appointments and 1 to 1 at home so I don't mind too much. Consultant this morning woooo x

 

[Boo44]

Good luck hope it's useful! X

 

[Reid]

I'm not sure if it's because it's a community nursery so they only get part funding from the local council. I'd quite like to see this other nursery to see exactly what they can offer him and the wheels are in motion for them to come out and observe him not sure how long this kind of thing normally takes but after they've came and seen him they'll call a meeting between. Us all potential nursery current nursery educational psychologist salt then after the meeting I can go and visit the nursery xx

 

[annanouska]

consultant didn't quite go as planned. MRI shows unexplained white matter on brain. This could be quite a normal thing or it may be something quite serious. Got to see another specialist over it. Se feels he has 2.5 of the triad criteria for autism so he may not get that diagnosis his epilepsy is well controlled so happy with that part, they may do genetics on him may not. Said ATM he sits in several diff boxes and is a bit complex. It's a pain as its hard accessing all e right helps. He has his team review December so I may know mor then xxx

 

[sequeena]

annanoushka I hope it turns out to be nothing serious.

As for everything else - ugh. I hate it when they say that it's so shit

 

[annanouska]

Is funny as I thought of u and t with the fits so much but not enough kind of thing!! I hope its ok a few ppl on his epilepsy forum have same thing so will it and see, think its December time we shild go x

 

[sequeena]

That would be a massive help thank you. He's had another few 'episodes' today. We were at the eye clinic and the eye nurse there saw him doing it.

I can't get the damn thing on video though as it's so short!!! But his key worker, portage worker, various family members and now eye doctor has seen it so I'm not crazy at least

 

[Boo44]

Annanouska what sort of thing can cause abnormal white matter? Sounds confusing.. Also what are the triad of criteria for autism? Sorry the meeting didn't go quite as planned

 

[Reid]

Sounds like you've had a tough day hun really hope that it isn't anything serious.
Had a really upsetting day yesterday for complete different reasons. I went to pick j up from nursery and the manager came over to talk to me blah blah chit chat then she said that they think it's best j doesn't go to nursery on Friday while the Halloween party is on they think it will be to much for him and sorry to be frank but utter shite I think it's so it's less hassle for them. I used to take him to toddlers he had a wee Halloween party there was fine.
I'll be at work on Friday but I've made him up a wee goodie pumpkin and daddies taking him to his gran and papas there having a wee party there for him got his wee costume in all.
Very disappointed in the nursery though and still no work from the other potential nursery xx

 

[annanouska]

Complex genetic and metabolic disorders, bleeds to brain, blockages, areas of brain damage, scar tissue, little bits that didn't quite develop right but are harmless, brain infections and diseases and general Old age or one of them random things also said sometimes they never find out

She didn't go into too much about the autism on this appointment, they look at social emotional, imagination and language , communication. He fits a lot but not quite all she currently described it as a typical autism but the concern is there's a lot going on with the epilepsy the scan etc to know fully what's really happening so its a long road.

Sequeena what were t's episodes like. Videoing anything is a nightmare, by time I've found my phone and set it up whatever I needed to film has stopped. I did have a diary but tbh I'm exhausted just keeping up with everytuj g its last on my mind x

 

[sequeena]

He just stops like he's been paused. Sometimes his eye lashes flutter. A few times he's gone rigid and once it happened whilst he was on his hands and knees and he fell, but that was due to the position he was in. Literally lasts 10-15 seconds. By the time we've realised it is an episode and not him just ignoring us I don't have enough time to film it. He snaps out of it and just carries on as normal afterwards I don't think he knows it's happening.

 

[Boo44]

Wow it all sounds very complicated which is hard when as a mummy you just want answers and the right help for your baby x

 

[RachA]

Sorry about your appointment.
How soon will it be until you see someone else about the MRI result? Hope they don't leave you waiting too long.

 

[annanouska]

December time I think.

He's very happy and being boisterous etc so I'm taki g that as a good thing.

Sounds very much like seizure activity sequeena. A typical absence tends to be very brief tho Marcus did have many 10-15 seconds and a Couple over a few minutes. It is possible he is having a different type of seizure as well as absences. He won't be aware of what is happening or recall after. Just keep a diary instead if its easier there are some free apps about too seizure log type things. Also feel free to join us on epilepsy in babies toddlers and children on FB they are absolutely amazing. I've had loads of advice and help on there.

Do you have the MRI and EEG booked yet? They shouldn't be leaving him like this. I know T is complex like M but with the right medication it may make some huge differences for him.

Random giggle for u, he just chucked his bits of crumpet on the floor. I was about to tell him off but he runs off to get the broom! He's doi g this a lot ATM he spills thighs just to wipe them up

 

[Peanut78]

Anna, I can't find your original post on the MRI, so this may not be relevant... My T was found to have "delayed myelination" on a brain MRI when he was 2. It basically meant that parts of his brain hadn't myelinated the way they should at that age. This explains his motor planning difficulties as messages in the brain are not transmitted from one part to the other as effectively as they should be (imagine the plastic around a wire which ensures the electronic pulses stay inside and on course).

He was also screened for a wide variety of "demyelinating" conditions which is where myelination is degenerative (including metabolic screens). I was told in this scenario's you would be seeing regression not progression in development.

Lynne, that sucks about the Halloween party - I totally agree that is for their benefit not him

Sequeena, I hope you get to the bottom of the spacing out - whatever it may be

 

[annanouska]

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