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Not sure what to do..

starchild

I don't really know where to start, Perhaps if we had all day !

I will go through the basics and see if this has happened to anyone else, I have a son who is 8 years old with ASD, Through fault of the school and our decision we took him out of school 2 years ago.

The classes were to big and the noise , The school kept swopping helpers, carers etc.

I have two other children and have found it very difficult to home teach him, He gets bored after 10 mins and has had enough, The education board came last year and stated that my son has the academic age of a 5 year old. They all so basically stated they did not see it fit to teach him at home.

I know my son and school is not for him even though, I know he should have friends his own age.

The problem now is  1. He will not learn at home, Not as much as he should 2. He has started to get worse behaviour wise with his rituals, It takes approx 30 minutes to get him out of bed with all the rituals, Twice I have refused to do them and he sat at the top of the stairs both times for 10 hours. On his own with out a drink or food, Until I carried him down stairs.

He will not go outside and walk, and he will not wear shoes or clothes, Only pink pj's and pink slippers.

He complains that his feet hurt, But there is nothing wrong with him. 3. His sleeping is dreadful, He goes 2 weeks in a routine and then he will be off for two weeks being awake 17-20 hours per day. He is only little so I have to stop up with him. Half the time I am shattered like typing this at 4.53am. been up all night.

He won't sleep in his own bed and will only sleep with me. WE have no help from any one health wise or other wise, We have been left to ourselves for the last two years, No one is intrested.

He did have a statement at school, But no more. The doctor the last time I saw her suggested putting him on a sleeping medication, which I am not keen on, That is the only advice we have been given.

There is a special school but we have been told there is no help with transport and with his sleeping being erratic, He would be off school more than he is actually in.

I hardly go out the house only if my husband babysits for a while, We live away from the family.

It is disrupting all our lives as a family, We actually went to a tribuneral to get the DLA and Careers allowence and were told that we could get no help as our son could walk, But refused so that was the end of it.

I was thinking about seeing my doctor again and explaining everything, But the help she put us in touch with last time was a complete waste of time. I know it sounds stupid but I don't want to tell the doctor, I am finding it hard to cope. I just have this vision of Social Services getting involved and me loosing my beautiful loved to bits son.

Any Idea's ?

  • Hiya, 

    I can see you are having a hard time with your son and your suffering also.

    I can not tell you how or where to get the help as i dont fully understand where you are or your full situation. But go to your doctor and MAKE them listen. They are there to help and ensure your son recieves the care he deserves. Its okay to admit that you are struggling to cope, it doesnt for a second mean you are a bad parent, it means your a good parent who at the moment is struggling to get the help your son needs. 

    My son although not fully diagnosed yet has had sleep issues his whole life. Hes now 10. Now were lucky if we get 4-6 hours a night out of him, his consultant reccomended that we try Melatonin (its a chemical the body naturally produces but is found that some kids do not produce enough) it works!!! Granted not all the time but for the most part 30 -60 mins after taking it hes asleep. when it works he does sleep longer as i feel it helps him relax, unwind and be ready for sleep.

    I hope you soon start recieving the help you need hun, its hard when you feel like you are alone and no-one is listening to you. Keep strong and fight!

    Take care xxx

  • hello, i have just read your post, and understand your frustration, i have been fighting with schools for 7 years that my son was not just " a malicious child" as his teacher once told me. We moved to a new area and a year ago his new school suspected Autism this was a shock i suspected ADHD but never suspected Autism at all. we to have had a fight on our hands with DLA as he has not been formerly diagnosed with Autism although we do have a letter from the educational psychologist to say she suspects Aspergers.

    With regards to your dilema social services are there to help and they may be able to pay for your sons transport if you ask them for help as you are not getting it elsewhere. They can also open alot of doors for you with pychologist etc etc. Explain to them your worries about taking your son etc and you will see they are not there for that unless neglect ect but that is definately not the case for you , you are doing all you can for your son and that shows, they may also help you with respite so you and your family can rest and recharge your batteries.

    i joined my local careres centre whilst i await a full diagnosis and this has helped me alot as they have put me in touch with other parents etc and other help thats out there in my local area

     i hope this helps x

  • Hi Starchild

    I have just read your discussion and I can see that you at the end of your tether with the so called professionals not doing their job in helping you.  Just a thought - would be helpful when you see the GP etc etc that you take a friend who is "impartial" to it all.  If you are anything like me I am so knackered and emotional when I see the "professionals" I just cannot say everything I need to because I get emotional and my mind goes blank. Perhaps if you discuss with your friend before these meetings about what you need and want for your son and she/he would be an unemotional backup for you.  Hope this helps.

  • Thank you for your advice, it is nice to know that your son is thriving at 21. My son is a real concern to myself, ie) what will happen when he gets older etc.

    Who will care for him and will he need to go in to a home. My son is very very clingy to myself he will not let anyone do anything for him, Apart from myself - He gets really upset and he would sit upstairs for days if you left him.

    We had help with speech and lanuage they now have gone, We had a paediatrician who was a complete waste of space, I told her at two he was having sleep problems and the school stated that to her too, He did 14% at school one year and the paediatrician new this.

    She was supposed to put us  on a waiting list after 1 year we saw someone who told us they could not help us that was CAHMS, The education board came to visit because of his attendance and told us either my son went to school or we would find ourselves in court for none attendance.

    Even though all the proffessionals new and the school no one would help, So I took him out.

    We have been in touch with every person going Dr's, Teachers, speech and lanuage you name it we have been there.

    We are just left on our own, I have contacted the special school who have told us we can't have transport for my son, He won't walk so we are stuck. I have even tried to get transport help from the County Council - No luck.

    If he did go to a special school he would more than likely do about 20% and they say this is unacceptable, We are just in a vicious circle and can't get off.

  • Hi

    Thanks for the reply, We used to get lower rate on the DLA and the Carers as my son needs 24 hour care, He would not walk sat down in the middle of the street etc or road and refuses to walk.

    He can not be left alone and he has no sense of danger or anything else outside. I know people with  the same problems as myself list to list. They have the higher rate DLA and carers allowence. They are entitled to a car because their child will not walk.

    We went to a tribuneral and we had to fight for medium rate on both. Even though they agreed he needed looking after and was mentally disabled. We even tried for a Blue Badge and got turned down due to we receive the wrong rate of benefit.

  • starchild said:
    a family, We actually went to a tribuneral to get the DLA and Careers allowence and were told that we could get no help as our son could walk

    You're being told wrong here. To get DLA, your child must have a physical or mental disability which requires care and /or mobility needs. The needs must be either be more than a child of the same age or the same as a younger child. With mobility, the child must either be unable to walk or need supervision outside. (for example, to stop them running off, crossing roads safely, etc) I get DLA and I can walk. I get DLA because I need supervision outside to keep me safe.

  • Hello, i was very sad to read your note, you are having a very hard time. This is my best shot

    1. you need to go back to the GP and INSIST on a referral to a relevant paediatrician. This will open up acess to Ots, Physios, all sorts of other people who can help.

    2 Go and talk to the Head teacher of the Special school, and explain your circumstances. it sounds as if this is where your son needs to be, so get him/her onside, and then ask how you progress.

    3 You need to understand that love is not enough. this is harsh but you need professional help. You and your family need specialist help,it's out there but you have to keep on pushing.

    4. Be like me, tenacious, I would not give up and so got help in the end.

    5,You must get some rest. IF your son needs medication, for a while then use it.

    6. Your best bet is to find a sympathetic paediatrician, he will be your link to other services.use the Autistic Society to get professional help

     

    Hope this helps, our son is now 21 andthriving....with support....it can be done!