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ASD Son and I am not coping

(16 Posts)
giraffesandelephants Mon 06-May-13 19:12:05

Hi there. I am new to the boards, have been lurking for ages, but feel the time has come for me to post as I don't know where else to turn.

I have a DS, 5, who was diagnosed with Aspergers in September of last year. He is a kind boy, but very hypersensitive to textures, tastes, sounds, smells, everything really. Lately he has become extremely demanding and I have no idea what to do. He won't wee by himself, go upstairs on his own, into our tiny garden on his own, needs constant direction and help with everything. He melts down for the smallest thing, and his melt downs are monumental. He refuses to do anything independently, and it is wearing me down. He has a two year old brother who is easier than him! He has a limited diet, where I can count the number of things he will eat on one hand. We are currently under dieticians, which have been useless (have been seeing him since the age of two). Since the diagnoses, we have been waiting to see OT, which has been almost 9 months, still waiting for psychologist as I need help. I don't know what to do, where to turn, how to deal with him, I'm not coping and I just want to pack my bags and leave - obviously I won't, but that's what I want to do!

Can anyone offer some advice or give me some coping strategies???? Thank you so much for reading, I am just finding this all so difficult and lonely!

moosemama Mon 06-May-13 20:07:50

Hello giraffes

I am sorry you are having such a tough time.

My eldest ds has Aspergers and is now 11. He was diagnosed when he was 8, so at your ds's age he was undiagnosed and off the radar so-to-speak, so I know how hard it is trying to deal with it all on your own.

First of all, how much do you know about ASD? For me, knowledge was/is power and I read everything I could on the subject in an attempt to try and understand him and his needs better and come up with some strategies.

I would highly recommend starting with reading Tony Attwood's Complete Guide to Asperger's Syndrome as a way of really getting to grips with what Asperger's is and what that means for your ds and your family.

The other two books I started off with were both by Brenda Boyd and I found they really helped me to see things in a less negative light. They were [[ Parenting A Child with Asperger's Syndrome]] and Appreciating Asperger's Syndrome: Looking at the Upside.

My ds is quite similar to yours by the sound of it. He doesn't do self-directed entertainment unless it involves a computer or games console. hmm He used to need us to go everywhere with him, but has improved, although still doesn't like going upstairs on his own.

As for the loneliness, I hear you, but keep posting - ask as many questions as you like, there's usually someone around to listen and if they can't offer a solution, at least they'll understand and hold your hand until someone else comes along.

In the first instance, I would say come up with a short list of the specific things/situations that are causing you the most problems so we can help you work out some strategies.

Oh and as for feeling like you want to pack up and go - don't feel bad about that either, there are many, many of us on here who have had the feeling they would grab the opportunity of a one-way ticket to anywhere else at some point. Like you, we wouldn't actually do it, but we would be lying if we said it the thought hadn't crossed our minds.

Finally, have a very unmnetty ((hug)) and either a wine or brew depending on which you prefer.

moosemama Mon 06-May-13 20:09:18

blush I'll try that link again shall I?

Parenting a child with Asperger's Syndrome

giraffesandelephants Mon 06-May-13 20:37:28

Thank you thank you thank you. I have both those books and am making my way through them slowly. I will post more tomorrow. It has been a long and difficult day and I just need to veg out on the sofa! X

HotheadPaisan Mon 06-May-13 20:54:37

Message withdrawn at poster's request.

moosemama Mon 06-May-13 20:57:48

You are very welcome, although I don't feel like I've said all that much that's helpful as yet.

Go ahead and enjoy your vegging.

Forgot to say in my other post, but do pop into the Goose and Carrot virtual pub threads. It's open all week in the SN Chat section and there's a new one each week - it's a great way to get to meet many of the MNSN regular posters and it really helps you to feel less alone with it all. It's where we can just post about our how our week has been, have either a much needed or celebratory virtual drink and share in each others' stresses and successes. smile

moosemama Mon 06-May-13 20:58:53

See you have a much more proactive, intelligent poster than me along to help with useful suggestions already - it's going to be ok. smile

PolterGoose Mon 06-May-13 21:19:54

Message withdrawn at poster's request.

2006hildy Tue 07-May-13 04:36:26

Hello, I am feeling excatly the same as you (HFA DS 6).

But today I am having a good day so can pass on some wisdom.

Rigidity of thinking - it's ok to challenge in the right way though and when you are feeling strong. (I did it the other day DS infloods of tears and me an hours later-boo hoo not good)

Dietition - mine utterly useless too just go with your instincts and offer a buffet selection of all food groups with a good multivitamin. Over a week or even a month (if blighter is really resitant) you will see they eventually crave the things they need.

It is a marathon not a sprint as someone kindly pointed out to me so pace youself and pick your battles.

Don't hold your breath or pin all your hopes on waiting to see the professionals as they only confirm what you were thinking anyway.

Make sure you apply for Direct Payments to get help and tell everyone your struggles as it can only help. (the HT saw my emails as a cry for help and yes infloods of tears again but with the help of HT and Family support worker, Social services seem to be trying for an outcome.)

One coping strategies is to walk into another room, outside and have 5 mins and pick up the pieces when you can.

I have hope that it gets easier as they get older as other mums have said.

Educate -yourselve as you have done aint nobody gonna help yourself and DS but yourself. Sometimes you need to make the professionals see sense.

As a carer, work out what you have no control over, some control and total control that way you can work out what you need to do first as a priority. Working on the Total control first -learnt this off a course.

Hope this helps, hang on in there.

EllenJanesthickerknickers Tue 07-May-13 09:21:28

Not really much to add, but just wanted to say welcome. smile

My DS is unlike yours, in that he has ASD, not AS, is hyposensitive, not hypersensitive etc etc. But I can still relate to your frustration. My DS was/is a fussy eater, and ate a very small quantity of foods but a decent enough variety. He is quite rigid over which foods he eats on which day but is surprisingly open to trying new foods. He will always try them, but usually hates them and will never try them again!

For your DS, variety would be nice, but so long as he will eat something from each food group, he'll survive. It's a 'pick your battles' thing, I think.

DailyNameChanger Tue 07-May-13 09:46:22

Hi my son s 5 with ASD. Last year was the nightmare from hell but things have got quite a lot better. What has helped me most is understanding where his behaviours come from, so I can anticipate and be proactive rather than reactive. We can really see a clear pattern of behaviour with my son now, a lot of his more difficult behaviours increase during term time and if there have been lots of changes in a short space of time, then he will become more rigid about stuff. We really had no clue a year ago and he was having meltdown upon meltdown. We can usually anticipate them now and diffuse them quicker. With the food thing, if your son is healthy, I really think you have to take the pressure off yourself as well as him. Make different types of food available but don't try and push him into eating them. My sons diet is very limited but he has skin, hair and nails to die for lol so he must be getting some goodness!

giraffesandelephants Tue 07-May-13 11:04:39

Wow, what lovely responses, thank you all so much.

Hi eating has been a problem since he was weaned, he would only eat orange 4 month baby jar food, and that was until the age of two! We are now eating a few things, but his diet is extremely limited and as such is taking Vitamin D, calcium and Iron daily and has to have bloods taken every three months. He won't take any multivitamin, I have tried everything on the market and which dieticians and doctors reccomend.

He is a lovely child, but my word he is hard work. He is argumentative, always has to be right, extremely sensitive, shouts - never talks, very demanding, everything is non-negotiable, cant stand his brother near him or touching his things, wont do anything independently, I even have to feed him! I am battling with it all, I am absolutely finished.

School is being really good, but they say that the bad behaviour doesn't spill over to school. They say he is a very demanding and intense child and hard work - his teacher has described him as a little old man very set in his ways. He is non-confrontational at school and so they aren't worried about him. They have said that they are working on getting him a "non-funded" statement, whatever that means! His writing is shocking, but they say it is alright - I don't think it's on a level for his age, and I think its because he isn't confident in his writing skills as he finds his motor skills not very good.

Oh well, another day, just keep trying I guess. Thanks for listening to me moan on!


moosemama Tue 07-May-13 11:26:56

Giraffe, you could be describing my ds1 in your second paragraph - not to mention how I felt about it at the time.

Similar with school as well, they accepted he was 'quirky' and had his own ways, so wouldn't back me up in going for a diagnosis. He has poor handwriting - and fine motor skills in general as well and at the age of 9, after an OT assessment and a lot of fighting on my part, was finally given an Alphasmart Neo to complete longer pieces of work on. We applied for a statement ourselves and he has it in there that he now has access to a computer or laptop for anything likely to be longer than half a page of writing.

It will get easier, as you learn more and start to work out which battles to pick, both with him and his school - and it's important to remember that ASD is a developmental delay - so he will get there with many things - it will just take a bit longer than it does with his peers and you will need to use different strategies to help him than you would with an nt child.

Cecilia02 Tue 07-May-13 13:13:19

My daughter has a short time mermory and needs extra help in school,can I get any bentifit for this.

EllenJanesthickerknickers Tue 07-May-13 16:41:52

Have you had a look at PDA? Pathological demand avoidance. Not sure if it fits your DS, but it might.

giraffesandelephants Tue 07-May-13 18:56:50

I will take a look at PDA. Thanks

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