Has a family illness changed your life?

Do you think screening for autism is a good or bad thing? Are you a carer for a child or parent?

Comments

[MRS JAYNE PRANGLEY]

I totally sympathise as I have 2 severely autistic children, but can somebody please say something positive for once about these beautiful, fascinating children. Yes, I have been through hell over the years with my children stripping in public, leaving 'deposits' in swimming pools, hitting me due to their frustration as they were unable to communicate verbally, sleep deprivation as they wake most nights, a year of my son using his carpet as a toilet because at 10 years old we coudn't bear putting big, blue nappies on him (he was finally toilet trained at the age of 11, but occasionally uses the bath. Our 11 year old son is non-verbal, but can swim like a fish and is the most wonderful artist (he pauses his videos and draws his favourite frames) Our 7 year old daughter is amazingly fit and active, wonderfully chatty and very sociable. Yes, she still hits me daily due to her frustrations and battles and finds running in front of cars highly amusing. But I am absolutely horrified that children with autism could be aborted - do you take a chance on how severe they are likely to be? My friends with Downs Syndrome children share this horror as of course many babies with Downs are terminated. Both my childen are fortunate to be in wonderful special schools which they love - we are so lucky on the Wirral to have this choice, I know that. Our son will need care for the rest of his life - who knows what the future holds for our determined daughter who battles her disability on a daily basis. Our teenager grew up too quickly as a carer for her siblings, yet she is a strong, successfuly girl who discovered a social life at the age of 12 and has never looked back. Our 11 year old son ran stark naked into the midst of her 14th birthday party - 10 very startled teenagers who look at life quite differently when they visit our house! Life is exhausting, worrying and very challenging, but when our son managed to say my best friend's name, when our daughter learnt to say 'I love you' when they are laughing, bouncing on the trampoline, I can't imagine how anybody could contemplate aborting an autistic child. I wish I had the time to write a book as some of the stories I could tell would make your hair curl - and probably give other parents' strength. My husband has a chronic illness and cannot work, so he and I are due to start volunteering at out son's school - to give something back to the teachers. Believe me, I absolutely dread the summer holidays as our autistic children are totally different - one likes his own space, the other is a socialite! But I wouldn't be without them and my friends, some who have extremely severe children, still think exactly the same.

[Nicki Morley]

After reading the about Tina's life with Drew her son my heart sank. I'm a mum to Isabella who is 6 years old and she has Rett syndrome. Isabella displays many autistic traits and has done since she was 2 years old. I have always wanted the best for my daughter, as we all do for our children, but why can't the education and medical systems see this???? All parents out there who are blessed with a child with special needs need to stick together, there is help out there and Tina deserves more, like we all do. We have so called experts out there telling us there's no hope, offering respite and hoping we'll go away. Why should we? These special children are here for us all to learn, for us all to grow, not use old ways of thinking and teaching hoping all will be well. I've been using the the 'Growing Minds' programme with Isabella, which is a mixture of the 'Son-Rise' programme and various other methods used with children with special needs. Its been an absolute blessing! Just reading some of the literature on their web page inspired me and turned things around in our home life. I've been through many many emotions over the last 4 years including grief, thinking about how life should be and what Isabella should be doing but looking back over the last 4 years I've realised how much Isabella has taught me in such a short time, how my change in attitude has made our lives so much easier, that i'm the expert on my child and that my gut instinct never lets me down. Isabella is an absolute blessing to my life even though its hard at times and I can empathise with Tina on many levels. Don't give up hope take a look at the 'Growing Minds' site and the 'Son-Rise' site they have many success stories, mine being one of them. All the best with your beautiful boy. xxx
P.S. Any chance Fabulous Mag can help us all?? we want to change the systems out there and bring them up to date.. why should every person with a special needs child have to battle the systems just for a little piece of sanity??? Every parent is out there telling the same story, why can't we fix this broken system that only offers whats best for them??? Please Fabulous help!!!!!

[josephine haydney]

Hello I have just finished reading your magazine and I couldnt help reading the story of Tina and her son Drew, her autustic child, as a parent with a girl with learning disabilities almost 3 I know what she is going trough, my daughter hasent got autisim but has other things like non verbal, no communication, cant walk and when I read Tina's story when she said her daughter is missing out, I agree with her, my son 11 had to grow up too quick since my daughter was born, I even forgot all his particulars ie date of birth etc.etc when I took him for a check up to the doctors last week only because im so used to take my daughter to hospital. There maybe help out there for people like us but you have to fight hard for it, we have been giving 6 hours a month direct payment for respite, my duaghter only go off to sleep with medication and then she wakes up every 3 hours waking the whole house up. I still find it hard sometimes to accept that she is different and I know that I will do anything to help my little girl gets better, but all I was told from doctors was she will need help for the rest of her live, go home and enjoy...I never knew how hard to be raising a child with a disability but now I know, its a very stressful, rewarding job but I also learnt a lot. So well done Tina you are doing a great job and most of all you are not alone.

[Natalie Murphy]

Hello
After reading the story with Tina and her disabled son Drew I have actually wrote a letter to her for support as I have a severley autistic sister and I have never resented my mother or my sister because she has had more attention then me. My mum has done her absolute best with all of us and I can see Tina is doing the same. If I am half my mum when I am her age then I will be very happy. I would never resent her only admire her for what she has had to go through. I hope Tina receives my letter and feels comfort for her and her family knowing she is not alone.
Natalie Murphy xx

[susan lee]

Hi, I read your story today. I have three children all with disabilities ranging form liver disease to constant pain to life threatening to profound autism. I try to treat all my children the same (12yr old boy, 7yr old twin boy and girl). My 7 yr old son is the autistic one. He used to head bang anything, lose his temper, to not having any communication. He has been at a special needs school for 4 years now (my other son also attends), it was the best things I could have done for him. They have helped so much, with support and advice and a shoulder to cry on at times. They help to put a good base line down which then enabled me to adapt this for home life. I can take my son most places, he enjoys alot of things including recently horse riding. Over the easter holidays I have taught him his telephone number and address. He has only been talking for 2 years. Now he will not stop. Being a single parent, I have to have one set of rules for all the children, this works really well. And I am sure this is why my son has advanced so much over the pass couple of years, by treating him as a normal little boy who just happens to have autism. Yes there are bad days, sometimes very bad days. But as soon as this has passed, I tend to forget it. What has happened as happened as far as I am concerned. This works for my children and myself. We have a happy life, I love my children so much, as you do yours. What works for my children may not work for others. We can only learn from hearing about other families, and maybe if one little bit of infomation from other families helps me or one other family then we have success. What the future holds?, I don't know, does anyone know? I take one day at a time. If its a bad day, we get over it and forget it, but if its a good day we hold those memories forever. And there are alot more good days now. Good luck for your future and to all the good days.

[Julia]

There is help out there! We got 100% funding from Caudwell children charity to attend a Son Rise seminar in London, which my husband found very positive, uplifting and motivating. You can also approach over 20 charities for financial assistance. There is a guide called A Guide to Grants for Individuals in Need, it costs £45 or £37.95 from Amazon but I found it very informative.

As you probably already know, you are eligible to Direct Payments from the Social Services for someone to look after your son. We were told that we are eligible to 6 hours per week, as both of us not working.

Hope this helps.

[nichola sherratt]

i read the story in your magazine today 19/04/2009 i have 2 children with autism 1 at 17 and 1 at 15 my 15 year old is called lauren lauren has had learning difficulties since1995 my son also had learning difficulties from birth i fully undrerstand what tina is going through my daughter attended a school for children with severe learning difficulties where she was doing quite ok the borough of which my daughter attended shut 3 schools for children with learning difficulties in 1996 it changed my daughters life and all those around her they wanted children to go to school where they thought was appropriate at which i didnt feel the school they wanted my daughter to go was right for her unfortunetly i had no choice they told me everything would be in place it wasnt my daughter lasted 11 days then the school said they couldent handle lauren bearing in mind they were changing classrooms every hour and every time you walk through a door you have a bell for lauren and our family this was a nightmare just starting to happen.after what must of been about 12 months of fighting through newspapers telivision and mp mr andy burnam they finally got lauren a school out of borough because of laurens behavour it was hard to place her in the meantime my 2 childrn even the 1 with autism were beaten daily i fought my son was a nervous wreck my daughter developed scorisis through nerves i was just living for my daughter im a single mum who has brought my children up alone apart from support from my mum i wasnt offered any social services support in the first 12 months and constantly cared 24 hours a day the school which they had for lauren only lasted 4 days by now you see she didnt know what day it was then she was home again another 6 months another school was found again only lasted 5 days lauren was getting worse her violence and tollerence of the real world was disintergrating at a allarming pace and through all of this i would never give up i loved my daughter the same has when i gave birth i to have photos of my darling baby girl all over my house when ive had a really bad day i just look at them and know its not her fault my feelings will never change after lauren came out of her last school i had to fight again for a place for lauren again this time it was out of borough again and it was a school for children with autism and challenging behavour it provided residential and daytime care lauren started to attend in sept 2008 now though at this time lauren has been prescribed alot of medication of which made her put weight on at a allarming rate she doubled from 7 stone to 14 stone in 2 years the bigger she got the more powerfull and strong she got it was taking 5 men to hold her down we at home were starting to recieve some extreme injurys she has to be taught in a room with someone just sat in the doorway she cant come out of that room its awfull to see and awfull to hear ive been there on numerous occasions and broke down you see i had no choice i was told that was it for her there was nothing else these people had made my daughter into somthing she wasnt into somthing now i cant control my daughter you see was only diagnosed has having autism 6 months ago its took them 14 years to diagnose in that time my daughter my sweet daughter is someone who hurts us daily hurts others daily but my love and fight for my daughter remains people stare comment but i know shes my little girl and no 1 will hurt her.this is a long story but i feel the need to make people aware autism is a illness they are not naughty children its the way there brain works. my daughters story doesent end there the school which lauren now attends says she is to big and too difficult to handle now they have to put lauren in a emergency placement residentially so they can assess her for mental health i have fought against this for so long and am really angry that this could have been avoided 3 years ago my daughter went into a system you trust and come out in a appauling state i have fought tooth and nail for my daughter my family and most of all for autistic children reading about tina has made me feel im not alone these are children we gave birth to children we cherish more than anything in the world and will fight to our death for i gave everything up for my children my life my relationship and i would do it again because somtimes you get so much back they can be the most loving happy children but i wouldent change them for nothing thankyou tina your story gave me the oppurtunity to tell mine thankyou x x x

[mrs jane brown]

My 10 year son has Asperger's and when we were told of this when he was 2 and no help was offered. Me and my husband have managed to get him a E.P ,O.T and have him statemented with one to one support at school. His indiviual eductional plan of all the things he needed to achieve was like the size of a bible when he was younger but I am so glad we hassled and bothered the authourities so much to get him the help as he is due to start a mainstream seconday school in Sept and does not need one to one support anymore and is highly intelligent ( level 6 on sat ) in everything and they should be on level 4. Not bad for someone who did not start babbling until he was nearly 5. The boy is a genius and we are so proud of him and even though he will never be cured ( as there is no cure ) most people if they met him would never know and I am absolutely positive it is because he got the help early on

[natasha hutchings]

While reading this story tears was running down my face.I said to my partner it was like someone had wrote about my life. My son was diagnosised with aultism about a year ago for years the doctors was telling me he has golbal dev delay but i knew different as a mother you know. all the systoms in the story is my son. we had to wait 2 years to get to see a special doctor to tell us if my son is aulstic.my son is 9 years old and he has a younger brother who is 4. its my 4 year old who helps his aulstic brother which at times its sweet and other times heart breaking. i would like to say good luck and your not alone. I still find some days very hard work and feel like i cant go on but i look at my son and i know he doesnt mean it and deep down he does love me. tasha xx

[michelle]

reading this article was like an action replay of life with my child even down to all the little boys behaviours and traits. the only difference is my son has a little more speech and is a year older. i wish you and your family all the best for the future we will need it.

[T Morton]

Hello, ive just read your magazine this morning regarding tinas plight with her autisc boy drew. My son is nearly 14 he has ASD i took over the care of my son when my wife became brain damaged due to chemo in treating leukiemia, could you pass this message on for me?
I was moved by your story and began to realise how many lonely people that are out there, autism is varied but more or less has the same traits. The desolation you feel at times with the struggle into the teen years is the hardest job i have ever done. The job you do is fantastic never give up on him your son is so very lucky to have someone who connects at that level with him and moved me to a tear. When he drifts away into his alternate world he is only a strand away if your there for him the connection is so very special. Your plight made me realise just how hard my role and others like you can be stigmatised and misunderstood in our all to perfect society. You can hold your head up your medal is your son as my son is to me he shines when he wakes and is such a special chap that i would never wish to change him not now. i would still have been struggling now if it hadnt been for national autistic week in the Daily Mail all those years ago and noticing how the diagnosis of autism related to my son!
Well done Tina you are an inspiration to us all, our struggles will continue beyond the realms of adulthood and beyond in this unfortunate reality of our childrens diagnosis. Take care you are doing a worthwhile job as hard as it is, I as a carer know how you feel within, best of luck in the future.. Terry xxxxx