Abbie lou
DoppleMe

Hi everyone, my name is Abbie lou and I am a parent of 2 children, my son J is 19 and has cerebal palsy and severe autism, my daughter M is 10 and able bodied.

I have years of experience of raising a special needs child as well as my daughter. I have been through the schooling process as well as years of hospital appointments, stays, dealing with lots of specialists and social workers..

I have had highs, lows, tears and laughter, thankfully majority highs and laughter raising two very different but equally loved children mostly as a single mum!

One Space asked me to write my story which you can read here - Abbie's Story and they also asked me to come on board to support parents who have children with disabilities, so lets talk!

Are you raising a disabled child?

Posted on: February 20, 2014 - 5:20pm
Bubblegum
DoppleMe

Hello, I read your story, thank you : )

Posted on: February 24, 2014 - 9:35pm

Sally W
Parenting specialist DoppleMe

Hi Abbie lou, just wanted to welcome you onto One Space Smile

 

Posted on: February 25, 2014 - 8:25am

Abbie lou
DoppleMe

Hi bubble gum thank you for taking the time to read my story. Hi Sally I'm excited to be part of one space, thank you for the welcome

Posted on: February 26, 2014 - 1:31pm

sparklinglime
DoppleMe

Hi Abbi lou

I've been on my own since March 2004,  At the time my children were12, 10, 8 and 5.

My third child has mild autism/Asperger's.  Life has always revolved around him really, but I always hoped it was done in a way my lot didn't notice!  Now they're 22, 20, 18 and 15 I can ask these questions.

My oldest says all he remembers of his childhood are good times. 

C is now 18.  I will worry about him forever.  There is very little support, other than extra help in College.  With issues I've had over the last two or three years I have come to realise that he probably won't be able to live independantly.  Not a good thing to realise really.

My lot have promised that they will always check up on him, however, and make sure he's safe and that he pays his bills!  That is as far as I have gone with them.

He will still disappear and wander for hours.  We often end up looking for him.  He will go out without telling us - and has done for years.  He can't quite grasp the concept of telling us  he's off out!  While he has a mobile, he usually switches it off!

I don't know how you feel, but I feel that having a disabled child does put tremendous strain on a marriage/relationship.  Sometimes having to deal with things on your own can be easier than conflict.  Although I was married for 20 years, their Father choses to have very little to do with them.

I think a part of me hoped that as he got older things would be easier.  I have found this not to be the case!  He is a brilliant character though, once he settles and starts to talk to people.  I wouldn't change a thing about him, as the autism/Asperger's is what makes him who he is.

My heart goes out to you as you have had so many other things to deal with.

My story, although a bit condensed, is in the Single Parent Stories Section - Losing my home and lifestyle.  It hasn't been easy, and still isn't.  But we're a happy unit.

I'm glad you have had the support of your parents.  Your Dad sounds amazing.  

Sending all my very best wishes your way.

Posted on: February 27, 2014 - 11:58am

Abbie lou
DoppleMe

Hi Sparklinglime

Thankyou for reading my story, and your lovely comments, your right my dad is fantastic as is my mum, I have been very lucky, to have such  supportive parents.  I have just read your story, it was very moving, you have been through an awful lot, and managed to stay very postive, while bringing up four happy children with the added pressure of autism, you must feel a great sense of acheivment. Especially as you have done it as a single parent.

 Things must have been very hard for you at times, and obviously still are with a child with autism, and three other children to think of as well.

  Yes I very much agree with you that autism puts a great deal of pressure on relationships, and not just with a partner, it's hard for other people to realize sometimes, just how hard everyday life, can be when your child has autism.

I too always thought that when J got older things would get easier, in one sense they have, but all in all they haven't, I like you find it upsetting that J will never be able to live independantly. Have you considered where you son will live if he no longer lives with you? I know how upsetting it is to even think about it!.

It must be so worrying for you when your son goes out, and does not return, is there anyway of locking the door so he is unable to leave without you knowing? I suppose now he is an adult, this is not really realistic? I have no experience with this, as my son is unable to go out alone, and would not even think to do so, I know that alot of parents I have met with able bodied autistic children experience this though.

I like you, would not change my son, as he would not be the same person, but I would like some of the behaviour linked to autism to go at times! like when I cant get him to leave the house to pick my daugther up from a party!.

you say your kid's comments, happy childhood, will always worry your son, I would say my daughter would say the same. I think we have a way of making sure everyone is happy, and gets their needs met, against the challenges, I have respite for my son, so means I am able to do things with just my daugther, and every other monday she goes to her dad, so I am able to do something with just J. I find this has helped.

Was nice to hear from you, and someone facing similar challanges.

 

Posted on: February 27, 2014 - 1:55pm

sparklinglime
DoppleMe

I was never offered respite, not that it matters now really...

I do worry about where he'll live.  I have an agreement with the housing association that should anything happen to me - serious injury or death - that the tenancy will pass on to my daughter who is now 20.  That was a drama!  I'm hoping that will keep a roof over their heads.

Ideally I would like to see him in sheltered accommadation, but his needs aren't seen as great.  I can only hope his siblings will keep a eye on him.  I have not asked them to take responsiblity for him, as I feel it is a big ask...

I lost my Dad a couple of weeks before my oldest was born, and my Mum when my son with special needs was 11 months old.  I may be 51, but still miss them incredibly :-)

I used to lock the door when my son was younger, but he would climb over the gate at the back, even though the housing association put up one that was 6' high!  My neighbours understand that he has problems, and will let me know if they see anything.  There is one tutor at college who is brilliant too, who will phone if there's a change of routine at college.  But yes, being an adult means it is impossible to change things.  All I say to my lot is that we have to deal with any consequences, and would feel so awful should anyone else be involved.  With that, I mean that he will forget to look before crossing a road, or if something upsets him he will run home, blindly, unaware of dangers.

I'm sorry life has been so challenging for you.  And totally understand where you're coming from with the behaviour Cool

Posted on: February 27, 2014 - 3:36pm

sparklinglime
DoppleMe

I do tend to 'talk' too much, sorry x

Posted on: February 27, 2014 - 3:39pm

Abbie lou
DoppleMe

Never be sorry for talking to much, talking is good, I should know I do alot of it! That is a real shame you were never offerered respite, is to late now? would your son go now due think? My son started a brilliant respite home when he was 18, he loves it and they are very supportive, I'm aware your son's needs are different, so it may not be for him!. That is good you have that agreement with your house, I can imagine it was not easy nothing ever seems to be does it! I'm always very shocked when anything goes to smoothly!.

 I'm so sorry to hear you lost your parents so young, have you got any other support? have you got a social worker, who could help with respite if you were to feel it would help?Smile

Posted on: February 27, 2014 - 3:52pm

sparklinglime
DoppleMe

I have no other support.  But I figure we have got this far!! Laughing

My older two are really good and will always be here if I go out (which I am doing at the moment).  My 18 year old agrees not to go out, but I'm only out for a couple of hours.

I've had a lot of support form this board.  I've been lucky.

Posted on: February 27, 2014 - 3:56pm

Abbie lou
DoppleMe

You have done very well with no support. Yes you are very lucky it sounds lime your children are a great support to you and your son. Its great you have them to watch your son for you. You must be very prou. Of them. Have enjoyed talking to you today.

Posted on: February 27, 2014 - 5:35pm

Abbie lou
DoppleMe

Like!!

Posted on: February 27, 2014 - 5:38pm

sparklinglime
DoppleMe

Laughing

Posted on: February 28, 2014 - 1:51pm

Abbie lou
DoppleMe

Why is it some days run so much smoother than others, or days you think are going to be a disaster end up so much better than you expected!, I had a day like this yesterday ,my son had a hospital appointment, he was finding the build up to it very stressful, the change of routine, the thought they were going to do something other than just look at his legs, was all causing him great anguish, how ever on the day with the help of a  list of his day plan ,  a  reward ,for staying calm  ( a trip to town!)  All resulted in a much less stressful day than I had endeavoured.

In fact he had me laughing so much in the waiting room; it was me that needed to keep quiet!  As he called out everyone’s names asking am I sue smith! laughter soon stopped however , when we had been left waiting to long

! And a sharp exit was made, with the doctor assuring us the conclusion and notes of the day would be sent ASAP through the post, why do they make people with needs such as Autism wait so long!

The day before was similar, what started with a stressful day, the next door neighbour going on about the fence in the garden blowing down and  could I get it sorted that day, bills, overdraft letters! Was suddenly turned around with, pleased to tell you your daughter has been offered a place at her chosen secondary school, Yeah no appeals to be made!! One very happy mum and daughter! And then Pancake Day in which m made perfect pancakes so much so that she is now in charge of pancakes for breakfast on the weekend!

And as the days keep managing to over come the stress of life! A friend informs me that from Sunday we will be having the same weather asGreece, and he is of to buy flip flops, Flip flops seem a little premature to me! But hey I’m willing to believe it, and have planned a family trip to puxton park, I love that when you visit places such as puxton park, carers are allowed in free makes the day affordable, and taking a packed lunch means I can keep the costs further down, always worth looking for vouchers of as well when planning day trips.

 

Has anyone got a disabled child and know of any good day out?

Posted on: March 6, 2014 - 3:30pm

Abbie lou
DoppleMe

Hi was just looking through my old comments and does anybody know of any good day outs! and thought I would share a good day out I had recently on my son birthday we went to barry island, it was a big day out as hes 20th birthday, we had a great day J loved the bumper cars, had not been there for years was not quite how I remembered as a child, but great all the same. I got me and Js train tickets at a reduced price as a disabled ticket and a carers ticket. and made the most of js free bus pass to get us to the train station.

Posted on: June 5, 2014 - 1:05pm

suneagle

There is a facebook page called

DLA Childrens fun days out UK

https://www.facebook.com/groups/28639938907/

Posted on: June 6, 2014 - 10:17am

Abbie lou
DoppleMe

Suneagle thanks that is great just had a quick look, and liked it, I had never heard of it ! Thanks for posting 

Posted on: June 6, 2014 - 12:33pm

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