Time to introduce myself -DS with ASD and epilepsy

[Widemouthfrog]

I have been following the special needs threads for a while, but have yet to post. I am feeling so low and overwhelmed today that I thought it was finally time to bite the bullet. I have a 5 year old DS who has just been diagnosed with an ASD and epilepsy. I have given him his first medication today and dragged him to school screaming and kicking - after all, if he has to take medicine he must be poorly and therefore shouldn't be going to school! I can't fault his logic. I came home and cried. It is difficult to admit my own vulnerability to family and friends, as I am so used to being positive so that they will stay positive around DS. I know you folks will understand.
I'm looking forward to joining in your threads, rather than just reading them

[TotalChaos]

Hello and welcome to MN. Sorry you had such a gruelling time with the school run. As you will have seen from lurking, this board is very good for letting off steam and being honest when things are tough. My DS is 4.3, has moderate speech delay and the pros seem to be inclining against ASD but it's all a bit unclear how things will pan out.

look forward to chatting to you further.

[Widemouthfrog]

Hi TotalChaos.

My DS's ASD diagnosis has only been confirmed in the last 2 weeks, and his epilepsy yesterday. Diagnosis was fairly straightforward for us once he started school and his difficulties were recognised. Prior to school, because his speech was good his other difficulties were overlooked. It seems unbeleivable to me that this time last year I had a little boy who was just a bit shy and stubborn, but now he has some serious 'labels'. Having seen his world implode on starting school I know they are the right labels though and we are moving forward. I think its the affirmation of his difficulties that has hit me today. The strange think is that his epilepsy does not really impact on his life (3 night-time fits since january) but this diagnosis has hit me far harderthan the one for ASD (Aspergers). I have seen him develop with the ASD, but the epilepsy was a bolt out of the blue.

[coppertop]

Welcome to MN, Widemouthfrog.

I hope you'll find the help and support you need here. Sorry about the bad start to the day, although your ds' logic did make me smile.

I have 2 boys with ASD (8yrs & 5yrs) and dd (2) who so far seems to be NT.

[magso]

Hi Widemouthfrog and welcome! Oh gosh I remember how truly awful it made me feel to drag my screaming and kicking child to school each day!! Ds is now 8, has LD, ASD and ADHD, but at 5 had to dragged daily to school because he didnt want to get into trouble - which due to his lack of understanding and the lack of support he always did! He is at S/MLD school now so goes chearfully!!
Could he understand the concept of medicines to keep you well perhaps? Ds also has to take meds and when he was younger it was a real hassle - then I had to go on regular meds and we did it together till he got the gist.
Even when a diagnosis is expected, it always supprises me how down I get for a while.
Hope the meds go better tommorrow and the rest of the day improves for you.

[Widemouthfrog]

I have a younger DS (2) aswell who so far seems NT though he can do a very good impression of some of his big brothers tantrums. He has tacken to stripping naked ( including removing pooey nappy) just as I am trying to calm down DS1 and coax him to school. His comic timing is perfect - my sense of humour can be somewaht lacking though.

[magso]

Crossed threads! You only had the diagnosis confirmed yesturday! Be very easy on yourself for a few weeks. Take care.

[Widemouthfrog]

Magso, I have introduced the concept of taking medicine to keep you well. He seemed to accept it, until he tasted the stuff! He is very controlling around food anyway, so giving him something alien and against his wishes was bound to be a disaster. We will persist as I am sure he will. He still screams and protests daily about having toothpaste in his mouth, so I expect this will just be another battle to add every morning. I'll try a social story, they sometimes help though usualy only for a short while before they become part of the problem too. Thanks for the advice

[coppertop]

Your 2yr-old sounds exactly like my dd.

She strips off the second she sees ds2 getting undressed and copies his shouts and screams perfectly. It all goes horribly wrong for her though when she copies his spinning. Ds2 can spin for ages and not get dizzy. Poor dd spins for about 30 seconds, looks ill and then falls over.

[magso]

Oh poor DS1 - why does it always have to taste yucky! (and too sweet can be just as unacceptable). It sounds like you have plentiful techniques up your sleeve to stay one step ahead! Your Dss sound lovely.

[Widemouthfrog]

Just to say, thanks for responding so quickly. DS2 is asleep and I was sitting here so depressed and alone. I feel so much better already. My kids are great, and I wouldn't change a thing about them, but just sometimes I need to be able to admit that I am not supermum but that I am overwhelmed too. My DH is very willing with the kids but I think we are both so overstretched and exhausted most of the time that there is little left to support each other. You guys are great.

[PeachyHidingInTheShed]

helo and welcome

i have ds1 as, semantic pragmatic, dyslexia and severe spolied brat synrome

ds2 nt, ditto spoiled

ds3 severe speech delay, and what we call fluctuating dx syndrome- now he's asd, now he isn't - we know he is, thats enough for now

also ds4, 12 weeks

[macwoozy]

Hi Widemouthfrog, just wanted to say hello and welcome to the SN board.

I have an 8 yr old ds diagnosed with HFA.

Peachy -severe spoiled brat syndrome - great one, I think my ds might have a touch of that.

[TotalChaos]

gosh I hadn't picked up on the epilepsy DX being yesterday! what an awful lot you've had to take in. you may well be entitled to DLA for your son, so you might want to think about applying for that, don't know if any of the health pros diagnosing will have thought to mention it to you.

[Widemouthfrog]

Spoilt brat syndrome - yes I've got a couple of those aswell. Totalchaos- thanks for the DLA prompt. We already get middle rate care, but you have just reminded me that as he turned 5 yesterday (yes, the same day as his epilepsy diagnosis) I should have been contacted again to see if he qualifies for mobility. Judging by the fight I have just to get him to school I would say he has some mobility issues. Especially when I can't keep hold of him and he runs away.

[amber32002]

I've got a 15 yr old with Stroppy Teenager Syndrome, and dyslexia. And as you'll have possibly read, I am on the autistic spectrum myself. Welcome. The people here are lovely .

Epilepsy and ASD are a very common combination. Absolutely no consolation to you at all, I know.

As for the medicine, it might make a difference to get it to a particular temperature on the spoon, or get him to hold his nose whilst taking it, to disguise the taste and smell. There again, it might not. But worth a try?

[TotalChaos]

anyone find that doting grandparent syndrome is a codependent to spoilt brat syndrome

[Aefondkiss]

hello widemouthfrog, welcome to the board, it is a good place for advice and support, and not feeling quite so alone. I hope your ds had some fun on his birthday, sounds like a pretty tough day for you.

[Widemouthfrog]

We moved his birthday to saturday and he went to diggerland. A fabulous day. I have just collected him from school and his TA has commented that he keeps shuddering today, and that she has seen this before in children with epilepsy. He, in his own words, has had a tricky day (interpret that as several meltdowns and asleep in class this afternoon). To be fair, this is not a typical day.
I'll try the nose holding trick later for his medicine. It may distract him if even if the medicine still tastes foul.
I can't beleive how supportive you lot are.
I am off to work shortly but I will check the thread before I go to bed.

[SixSpotBurnet]

Hi widemouthfrog,

I post on SN mainly about my DS3 who is nearly four and has autism. Welcome to mumsnet and to SN; this place is fantastically supportive!

[Widemouthfrog]

Just home from work and DS is hysterical about his medicine. He is demanding that we go back to the hospital and change it! He said it tastes dirty. This is more distressing than the seizures which he is totally unaware of. Is it really worth it?

[toobusymum]

Diggerland - wow! One of ds's favourite places, along with any tractor fair or emergency vehicle convention.

It will get better, honest.

[fatzak]

Hi Widemouth! My DS, also 5 has epilepsy too. We have a had a difficult reception year as his seizures are night ones which are getting worse and which are making him tired and lacking in concentration at school. Well, we think that it's that or possibly his medication - fingers crossed we'll get it changed after next consulant appt! We have the joys of an MRI scan to get through this summer!

[BriocheDoree]

Hi Widemouth. I have a DD 4 with speech and communication disorder and some behavioural / sensory issues (no firmer DX) and a 1 year old with demanding baby syndrome. Welcome to mumsnet.
Sorry to hear about DS and his medecine. Had to take DD to the dentist today due to broken tooth (no idea how! it's a molar). After 40min wait she was sobbing uncontrollably and nice understanding dentist has said it's not urgent and made a new appointment first thing next week.