cazhome1

cazhome1 · 10th December 2007, 23:54

Hello, I am a mother of three children one whom has what i call special needs and who needs a lot of one to one attention, we live in Northampton, Northamptonshire. My son was born with a lot of complex medical needs and
spent the first 22 months of his life in and out of hospital. We had the support from the health service until he hit five
but as soon as diagnosis was given of ASD a lot of these services diminished,this is the first time that i have ever written about my situation with my six year old son and his diagnosis of Autistic Spectrum Disorder in September 2006 alongside his other complex medical needs. He has a lot of complex medical needs so far the list is up to eight and i'm sure from other peoples experiences that i am not the only parent in this position. Can anyone tell me whether they have felt the way i do about support services for their children? Does it have to be a continual fight to guarantee that you have the best for your child? I feel absolutely and physically shattered and am starting to doubt my own ability as a parent of a child with these problems.

Can you offer any advice.

Carey2 · 11th December 2007, 08:45

Hello and welcome to you.

This is an all to familiar story , in my own sons case as soon as a diagnosis of Asperger Syndrome was given several agencies "fell by the way" and I got "well if that is ALL that is wrong he needs no help...... it is only a mild problem anyway"

Many so called professionals are anything but and their ignorance is really quite frightening.

You are definitely not alone and yes it is a shattering experience that drains you and can destroy families and marriages .It is totally wrong that this situation arises,some areas give outsanding help and the agencies work really well together,others it seems are hell bent on pushing people aside and spending as little as possible .

Your feelings of doubt are perfectly normal ,they come about when you are tired and stressed, I have been there many times myself in the last 12 years.

The fact that you are concerned and fighting for your childs rights proves that you are a good parent and doing exactly the right thing for your son.

Have you told your health visitor how this is affecting you? They are their for all the family and can often help with contacting other agencies for extra support,they certainly have lots of information to hand.

Have you joined the National Autistic Society? There are many services including a free parent to parent phone line,they also have local groups around the country that can offer help,advice and run events.

These are the details for the Central regional team,they will be able to point you to help services in your area.....

Central Regional Team

Covers Birmingham, Coventry, Derby, Derbyshire, Dudley, Herefordshire, Leicester, Leicestershire, Lincolnshire, Northamptonshire, Nottingham, Nottinghamshire, Peterborough, Rutland, Sandwell, Shropshire, Solihull, Staffordshire, Stoke-on-Trent, Telford and Wrekin, Walsall, Warwickshire, Wolverhampton, Worcestershire

Regional Co-ordinator: Ester Vickers
Regional Officer: Vacancy
The National Autistic Society
Castle Heights, 4th Floor
72 Maid Marian Way
Nottingham NG1 6BJ
Tel: +44 (0)115 911 3360
Fax: +44 (0)115 911 2259
Email: estervickers@nas.org.uk
Email: kim.higgins@nas.org.uk

Take a look around the forum,there are links to all sorts of help/services and publications.

Do keep posting and ask anything you need help advice with,remember you are not alone,there are many other parents that can share experiences with you and many places to get moral and practical support.

cazhome1 · 13th December 2007, 16:40

Thank you for understanding how i feel, whenever i discuss issues like this with my family (parents, sisters) it is all too quick for them to say do something about it. Thats the problem i feel that i am continually fighting his corner as well as my own if you know what i mean. It started when he was in main stream school and asking for a parental assesment in the nursery provision prior to his ASD diagnosis, this was turned down, then as he started reception his form tutor asked after 3 weeks why he hadn't been statemented!!!! She had previously taught ASD children and she believed he should have been statemented from the offset. 6 months later it resolved in the school saying that he was in the wrong provision and by this time the statement had been applied for by the school and given. Why do professionals never listen to the parent. It has been the same with the health support. We have been waiting 18 months to see whether we were entitled to any respite care. Finally on 11 Dec 2007, someone started to answer our prayers.

lynn · 14th December 2007, 11:29

Hello Cazhome1,
My heart goes out to you! as a mother of three you need to have a place to vent. When I have least expected it, and thought I dont know if I can do this! I have found an inner strength that only a parent can understand. I am sure there is no one that understands your son better than you do. My son is now a teenager and does not remember the difficulties he went through. His school called a few times a week at least! He was never bad just different and took teachers to their limit. Sometimes it was because he let his emotions get to him. By fifth grade It tapered off and now it is fine. I have two older daughters and their up bringing was totaly different. Believe in your self and vent whenever you need to.
Lynn

linnysue · 14th December 2007, 19:04

Dear cazhome1,
First of all welcome to The Blue Room Forum. I know you will find this forum to be a supportive, safe place for you to share your concerns and frustrations as you deal with a child with special needs.

I am so sorry the system is failing you and your son, but from Carey's post it sounds like there is hope in finding what you need.

You sound like a very loving parent who wants the best for your son, otherwise you wouldn't be here trying to search for answers. However, if there is any way you could pull back from your circumstances, I would suggest trying to get away for a few hours or even a day or two to pamper yourself. Do something for YOU to replenish your strength in order to be able to cope. Yes, your son needs you, but if you burn out or become drained, then you'll be running on empty unable to be of any use to anyone. So don't feel guilty, go ahead, get a new hair style or treat yourself to a day at the spa!

I wish you well in finding the best resources for your son.

God bless,
Linnysue

cazhome1 · 15th December 2007, 00:40

Thank you Linny Sue for your lovely message of support it can be quite difficult to find the time to actually have those few precious hours where i can just be me and not feel stressed to the max but i will heed the advice.

Had a really bad day today wth my son, he had a complete meltdown in our car and wedged himself in between my daughters car seat and the passenger seat. After trying to coax him out of the space, which did not work i had to try to pull him out! I ended up hurting my neck but managed to get him into his seat, Buckled him up and he undid the seat belt and my daughter too. After another ten mins of rebuckling we got on our way.
I was kicked in the back of the seat all the way home. By the time we got home i was in floods of tears. What a day!!!! This is a typical example of a bad day in ASD.

rainbows · 15th December 2007, 05:38

Hi,a difficult day with my 10 year old son is not unusual.Like you,i had many a time where he kicked me in the back whilst i was driving,even a few things hurled at my head.I had had enough,was seriously worried i would crash my car and the added stress of him being next to his brother and teasing him was driving me nuts.

I solved this problem almost completely overnight.I sat him in the front seat next to me.I gave the glove compartment to him where he placed some bits and bobs of his choice.He also has a blanket he likes to wrap up in even on short journeys.

I wonder how i ever get through life with my son,it is always difficult some way or another and having another child also increases the difficulty.I remember a couple of years ago,the specialist patting my hand and telling me i must look after myself the best i can and take any minute i can to relax.Thats what i do,stuff the housework at times,i need to recooperate.

I had no idea aspergers could be so difficult,ive faced opposition from my own family.But we have to remain strong.We have to stay sane and we have to care for ourselves more than others need to.Do not focus on the difficult parts too much,i know this is not easy,but we have to make our minds stronger.Every single day i practice positive thinking--simply by allowing no longer than 5 minutes for negative thinking.sure,it comes back and i start again but i know this has helped me survive.

Im still battling with my sons aggression but as time moves on,a lot of it is reducing by just experimenting and learning.I gave him a small room downstairs,more of a cupboard really,and that alone has brought more peace.

The times when all seem lost are not permanent for most...just ride through it as safely as you can.

rainbows · 15th December 2007, 06:07

I would also like to add,you may of read on here somewhere,i am currently starting tribunal proceedings against my lea.I could not of coped without the support of the national austistic society.They are a godsend.I learnt the hard way about 'professionals' regarding my son.I realised i was not agreeing with them in some areas and had to speak out.For instance,at his previous mainstream school,despite his diagnosis of as and them knowing through past experience with my son punishments dont work ,the head told me to go home and get his ipod for misbehaving.I utterly refused.This school had had months of advice too from autism outreach and doctor..but they simply did not grasp the full concept of aspergers,they did not have enough experience.

After this school admitted they couldnt meet his needs and i was on the verge of starting tribunal a year ago,my lea opened up 'an enhanced resource unit'assuring me staff were qualified and experienced fully.They told me a load of tripe-the staff did stupid and negligent things.They signed him off also-now there is no school for him and he only receives 6 hrs weeks tuition in another schoolroom.They want to place him in a behaviour unit,ignoring his asperger needs.This week i was handed over to tribunal.

Listen carefully what schools say about your son and log it all.Tolerate nothing if you are not happy.Fight them if you need to.Stand up strong.We can never replace these important educational/social needs again,these young years are so important.My lea wasted time and withheld information from me.Learn your stuff,learn your rights,get support,contact the national austistic society now,they have been fabulous and a much needed support system for me when i had little else.They may have a support club in your area to join.I can rarely get there at the moment but i do go to the activities they organise for the children.

My son has not attended full-time school for three years-if i had my time again with this i would of acted earlier.But im getting on the ball now with them.But i needed the support and advice from the national autistic society to do that.

No one can stand up for their childrens needs like a parent can.Get yourself heard and stay strong.Its not easy at times but it is worth it.If it was their children,they would too,remember that.Dont doubt your ability as a parent-you come here and asked for advice-you want to do your best so you are a great parent.

cazhome1 · 17th December 2007, 21:33

Thank you for your messages of support rainbows do you have a S.N.I.P (special needs involving parents) officer? You may have had one of these when your son was in mainstream education? They are very persuasive at getting your points across regarding your son's schooling providing you mean business. Do not take any nonsense that is my only advice. I am lucky as i managed to get my son into a special needs educational school where he is now starting to learn social interaction with others something that he could not even ascertain when he was in mainstream, he was viewed as quite disruptive. Now i know that it came from being in a class of 30 children, lots of noise and his sensories were quite disturbed by it. We now work on a P.E.C.S system where he can see what his net activity is (thanks to the help of Autism Family Support you can access this through a referral being made by your G.P or sons consultant, they have been of great benefit to him, including the schooling part. We are now moving on to the issues of parenting a child with an ASD and getting him to sleep in his own bed!!!! I am hoping that i can soon have a night where he is not up every few hours. Had quite a good day today with him today, he has been talking non stop about Father Christmas visiting his school, this will be a subject for the next few days with it often being repeated but hey!!!! I think it's great. Good luck with the educational hunting and keep me posted.

rainbows · 18th December 2007, 04:12

hi,when my son was in the mainstream school,there were sooooo many meetings about him and eventually i was given a lady to help me..from autism outreach ...on her first visit to me i remember telling her i was bothered that my son was name-calling to me..fat stupid pig etc[a lot worse now!]she flippently replied i must be bothered because i believe im a fat pig...umm no..i dont and told her so but she didnt take my worry seriously.Ok,theres a lot worse than that but it was something that upset me and i needed a bit of support.I never bothered with her again.Ive never been offered an s.n.i.p officer!i'll find out more on that.

Another autism outreach lady told me to tell my son he can swear in one room of the house only...yes,like that was going to work!have they actually seen children with aspergers i wonder,do i really want his younger brother to know i 'allow' it.He swears rotten now and ive tried everything to stop it,im still learning how to let it affect me less but i cant help it by not liking it.

Im lucky i have no sleep problems with him,if i have a bad day , i know i can get in bed by 9 and get a good nights sleep.I cannot imagine being worn out and not getting enough sleep on top so i feel for you.My boy is also talking about xmas non-stop,the same thing over and over and over..

but thats the handlable stuff ah!He went into the xmas party at his school-base,he has a tutor all to himself for these 6 hrs a week and im worried about his lack of mixing with other children,but the school invited him into the party,he lasted a whole minute!Just too much going on for him bless.

Im only into my first week with the tribunal thing,im doing it via a solicitor now but have the nas for support also.Its nonstop at the moment,ive just replied to stewart jackson mp.I asked him to get involved and my lea told him a load of shite[i did put the e on the end carey!

]they told him my son was receiving tuition when at that time he wasn't.So ive just sent my complaints about this to the lea.Ive also told them after xmas im looking for a tutor for my son and his disability will pay for this and i will attempt to recover these costs back from them and said this is a disgrace,this money is not intended for his education which they legally should be doing.

Within days of the mps involvement,a schoolbase was found so some good has occurred so far.

Im in the process now of gathering up all documents for my son and asked the lea in writing why they have named an behavioural unit and how it can meet his needs.

They summed it all up in one paragraph!

Never mentioned his aspergers needs at all,absolutely nothing.He's almost 11 and yet his visual processing has come out at 4.6 yrs..along with many other problems too.

Well,at least,their reasons will go in my favour.

LIke many before me and many to follow it peeves me off and the government are not doing enough to uphold the law.Note the new education slogan 'every child matters'....words are not enough!

I see there are now on-line petitions one can set up direct to government..if someone can help me with the wording i'll do it!