Aspergers/ASD support thread

lil_me

28 months is early but can be done.

Some info on these

http://www.mugsy.org/pmh.htm

In my area we have an Early Years Support Worker, who works for Sure Start sepcialising in ASDs. Might be worth asking if there is one in your area.

http://www.earlysupport.org.uk/

Nothing wrong with having mixed feelings when someone confirms what you were thinking, it doesn't matter how much you expect it, can still hit you like a brick. My son had gone through 18 months from being suggested to finishing assessment (it is usually quicker now) I knew it all the way through, but the letter with the diagnosis on arrived and I cried my eyes out.

Like Carmina said, whatever happens, he's still the same little boy you love, just the diagnosis helps get the support you need (most of the time)

Pink_butterfly_3

Big ((((((Hugs))))))) to you Dummie.

wonderfullife_2

Hi all
Just came across this thread, and does it bring it back to me.
My son was just over 2 when he was diagnoised with autism and servere learning difficulties, he's 10 now, and a more sunny, smiley, happy child you could ever wish to meet. He's also non-verbal, we gave up on him talking years ago, although he still manages to make an awful lot of noise, and could wake the dead sometimes.
I remember when he was first diagonised, and it just confirmed what we thought, but its nice to hear it from the professionals, and also gets the ball rolling for the statementing and all the "fights with the LEA" and did we have a few of those, and are still having them. Support and a good nursery/school is very important here, he needs all the experienced teachers/assistants with a good knowledge/understanding of autism, and we were very lucky with our son, that we managed to get him into an excellent special ed school, he loves school so much that its very hard to get him to stay home even when he's ill.
We've come a long way since the beginning, but its still a struggle sometimes, for him and for us, but you just adapt and cope and eventually it gets better, at the beginning it just seems to take over your life completely, which was fine for my son as he was the only one at the time, and we could give him all the attention, but now we have another son, whose 6 (non-autistic) and now we have to divide our attention between the two.
I won't kid you, it isn't easy, and a lot depends on your LEA, who can make it good or can make you fight for everything that your son needs, and unfortunately we have one of these, and we had to learn the hard way, and be as well armed and as knowledgeable as them as to where the law stands in regards to my son's education and what they "have to provide" for him, I think we sent the statement back 3 times, before we finally agreed to it.
Looking back and where we are now, the fight was worthwhile, and we now have a very happy contented son, who wakes up with a smile on his face and goes to bed with a smile on his face, what more could we ask for?

I really wish you all the luck in the world to you and your son and hope everything turns out alright.

Zara33

wonderfullife exactly the same as me!

Dummie good luck, it will be hard work but you will be surprised by the outcomes in a few years time, things aren't as bleak as your lead to believe.

Dummie_2

Thank you so much for your hugs, support and words of encouragement. It means so much to me and is helping me to be strong, focused and positive.

The HV has just left. Her opinion on whether Aidan is autisic is not as firm as the ST we saw yesterday. She is not ruling it out but pointed out that Aidan is coming to me for cuddles and is maintaining eye contact with me now which are good signs.

Yesterday our GP referred us to a peditrician but preferred to wait for the peditrician's opinion before proceeding with the hearing test and speech theraphy.

Today the HV said she would prefer us to see everyone at the same time so that a clearer picture would be seen so she will be referring us to audiology and SLT. She also thinks Aidan has a squint so will be referring us to Orthoptics as well.

Surprisingly, I'm feeling quite good now. Probably because I feel that Aidan will now get to see everyone that he needs to see so that any concerns can be confirmed or dismissed. I'm still scared and worried but feeel that whatever problems Aidan is experiencing is not within my control so the only thing I should focus on is getting him the help that he needs.

Another positive is that the HV is going to have a word with my chosen nursery for me to try and get Aidan a place. I've called about 5 nurseries (good ones) that are within walking distance to where we live but they are all full. Three of them wouldn't even allow me to go on the waiting list as they said they'll be no chance of us getting in. I was pretty worried and getting quite desperate but now it seems that if the HV has a word and mentions that Aidan has 'special needs' he will be given priority. Fingers crossed.

Savvy_Sue

Dummie wrote: »

The HV has just left. Her opinion on whether Aidan is autisic is not as firm as the ST we saw yesterday. She is not ruling it out but pointed out that Aidan is coming to me for cuddles and is maintaining eye contact with me now which are good signs.

I'd just like to point out that eye contact and cuddles do not rule out autism: because it is a spectrum there is AFAIK no single thing in common.

Good that your HV is pushing for everything at once, FWIW I think that's sensible!

wonderfullife_2

Savvy_Sue wrote: »

I'd just like to point out that eye contact and cuddles do not rule out autism: because it is a spectrum there is AFAIK no single thing in common.

Yes, have to agree with this, my son is very cuddly and affectionate and always has been, although his eye contact has always been bad. Like Savvy_Sue says its a spectrum, so it can differ from child to child.
Once your child has been diagonised then you should get in touch with your LEA to get your child statemented, (our son was statemented before 3) then the LEA have a legal obligation to see to your childs needs, our Tom went to a nursery within the special ed school, working with teachers experienced in autism.
A good place to start is checking out your special needs schools in your area and what provisions they have for younger children and if there is a nursery attached to the school.

Good luck and best wishes

mumofgirls_2

Been lurking reading posts on MSE for about 2 years but never posted before. This thread just touched a cord so thought I would drop a line about my experiences. I am a mum of two and a supervisor of a foundation stage setting (pre-school attached to a school) I have worked with children with Autism diagnosis and others who were being investigated. My youngest daughter has suspected aspergers she is coming up for 7. She has many of the traits described in previous threads but also pulls out her own hair and has done since age 2. She is a very bright child (I am her mum I am allowed to say that!) she has been IQ tested and in many areas except verbal performed at a level 2 years ahead of where she should be. She is able to communicate verbally except is unable to talk about any emotional issues and can only tell me basic information by writing it down. She leaves her book around the house for me to find and reply. I knew that there was an issue from around 6 months and really knew from 3 years. I have cried, ranted and raved and questionned why me (my eldest has visual memery problems and is really struggling at school) then a very good friend said to me recently I had them because I am making a difference in their lives. She is right I have done everything in my power to support my youngest daughter I have given her ways of coping with social communication going on around her teaching her social cues etc, I deal with each problem as it occurs trying to find systems to make her life easier or help others around her to understand. A doctor spoke to me recently about formal diagnose and I declined at the present time, I know she has it, she will not get any any addtional support with a diagnose so I will continue to work on each problem every day.
I know by reading the posts that you love your son totally and hope that you realise what a gift you are giving him by seeking help and being the best mum possible. There will be down days and there will be highs and I hope that each new challenge you face you do so knowing that you are making a difference and that without you his future life may be very different.

Good Luck and keep smiling.

andycarmi

mumofgirls wrote: »

Been lurking reading posts on MSE for about 2 years but never posted before. This thread just touched a cord so thought I would drop a line about my experiences. I am a mum of two and a supervisor of a foundation stage setting (pre-school attached to a school) I have worked with children with Autism diagnosis and others who were being investigated. My youngest daughter has suspected aspergers she is coming up for 7. She has many of the traits described in previous threads but also pulls out her own hair and has done since age 2. She is a very bright child (I am her mum I am allowed to say that!) she has been IQ tested and in many areas except verbal performed at a level 2 years ahead of where she should be. She is able to communicate verbally except is unable to talk about any emotional issues and can only tell me basic information by writing it down. She leaves her book around the house for me to find and reply. I knew that there was an issue from around 6 months and really knew from 3 years. I have cried, ranted and raved and questionned why me (my eldest has visual memery problems and is really struggling at school) then a very good friend said to me recently I had them because I am making a difference in their lives. She is right I have done everything in my power to support my youngest daughter I have given her ways of coping with social communication going on around her teaching her social cues etc, I deal with each problem as it occurs trying to find systems to make her life easier or help others around her to understand. A doctor spoke to me recently about formal diagnose and I declined at the present time, I know she has it, she will not get any any addtional support with a diagnose so I will continue to work on each problem every day.
I know by reading the posts that you love your son totally and hope that you realise what a gift you are giving him by seeking help and being the best mum possible. There will be down days and there will be highs and I hope that each new challenge you face you do so knowing that you are making a difference and that without you his future life may be very different.

Good Luck and keep smiling.

What a super 1st post.

Dummie_2

Momofgirls - Thank you. I don't know what else to say. But I'm sure that as a mum who's gone through the experiences you have, you will understand. Thank you.