Hello All. I just wondered if anyone else gets a bit fearful when they think of the future in regards to parenting a young special needs child? I get quite anxious when I look down the line at years to come because whilst my son Max is currently a cute little 5 year old. He won't always be. He will get bigger, and if the past few years are anything to go by, somewhat harder to manage, and sooner or later he will be a young man. The years will continue to trickle past as quickly as they always do. And more importantly I won't get any younger as the years go by, will I? I've yet yo meet anyone who has had a great and long term resolution in transition. And I am so damn sick of being told 'you can't worry about all that, it's so far away', by those who mean well. Actually, I CAN think about all that because it concerns me and my son. I have the usual anxieties about my daughter and her future, you know, all the usual stuff about education, peer pressure, boyfriends in the future etc. With my son, he will ALWAYS be vulnerable. Many of the decisions about his welfare will always be made by someone in an office at a panel meeting who has more often than not never even had a child of their own. He will just be a case file; a decision pending, a box ticked with the slightest funding spent where possible. We all know it but play the game because there is no choice. I'm sure in years to come I will be even more aware of the fact that the best care is often the cheapest dressed up like a silk purse. My main issues along this whole path life has thrown me so far, isn't the actual day to day caring for my son, whilst it can be very stressful (to say the least), my main source of sadness comes from future uncertainty. Anyone else feel the same?

I can't agree more with you - it was almost as though I could have been writing this post. I know that my son will be cared for, but who will care about him?

Hello Star.

Yes you should be thinking now about the future: where do you want your son to be in 10,15,20 years time? Start planning now! Provision is changing all the time but you can start now to prepare your son for the life you hope he can have: give him essential social skills, behaviour, health: everyone is precious and has a right to be here so don't settle for less than you think he's worth! Get as much information as possible, join all the support groups you can. It isn't easy, it doesn't get easier, it just changes, so get a support network, arrange respite, make time for yourself and for your other family members, my rationale is that if one family member has special needs, then all of you will. But don't forget to enjoy every special moment and memory of his childhood.

My daughter is soon to be 18, & we are going to yet another SEN tribunal, I'm exhausted, depressed, and I want to be on my own - but that's life and I have to get on with it, if I don't no-one else will,  she is a wonderful person, I love her and get so many rewards from being her mum, and she deserves the best. If this is my role, I'm going to do it the best I can. Good luck. Joanna

Thanks for your replies, nice to know I'm not alone. Although having said that, it often feels as though i am. My son is 5 years old now and it feels like a long 5 years sometimes. When he was first diagnosed a few years ago with autism (turns out to be severe) and global developmental delay (severe learning difficulty), I knew it meant that life as we knew it would be forever changed. but I really thought we could be a family who happens to have a child with autism, not a family who lived their lives around the fact. Guess i was wrong. I was so determined not to be like many of the other parents I had met; depressed, grieving, soul destroyed.I was going to cope. I'm good at coping, makes everyone else around me feel comfortable. But even though I knew it would be hard, I had no idea. I was never told that my son may never, ever speak, not even one word. I never associated autism with incontinence either. And even though i already knew a little about ASD, I never realised that my son would still be aged 12 months mentally when he was 5. Of course the health care professionals don't like to tell you those things; it makes them feel uncomfortable, so much easier to give you false expectations and hope. I personally would rather have a healthy dose of reality, then anything else is a bonus. I just never knew it would be this hard and I find it difficult to be optimistic. The help you get is atrocious most of the time and that's if you are lucky to get it at all, if you have grovelled enough and humbled yourself in front of the right people you just might get respite, if you can wait long enough. Ask for help? The hardest thing to do is to admit you need help and let's be honest, it doesn't exactly come flooding in when you do, does it? I mean really; stand back, take a look. It doesn't paint a great picture does it, this existence we all lead?

Hello Star,

just been reading your story and fully understand how you feel.  I myslef am  a mother of 7 with 2 special needs sons.  Micheal has aspergers and Martin has cerebal palsy and is wheel chair bound.  Both are now adults 30 and 25 years old.  3 of my children have left home and started their own famlies so I now have grandchildren also.  At some stage you have to bite the bullet and realise the only person your son will ever need is you, I know this  is hard but what is the option, I couldn't face the thought of either one of my sons not being with me.  3 years ago I got this magic thing called respit for Martin which he gets 4 days a week during the day time.  I don't believe we are given these special children if we cant cope the future will take care of its self  don't worry as I have proved.  Martin needs 24 hour care. Ava

We have always looked ahead and planned. We are also 'pushy parents' who push to make things happen. We have met other parents and got advice for our local area and our son is now 17. He is living in a home with other teens ( & carers) and comes home every other weekend. We visit on a regular basis and we stay with him. It CAN work out, but it doesn't happen by magic. We couldn't have done it on our own. 

I was once in the same situation as you.  Take it one step at a time.  Make sure that you have regular respite not only for your own sake but also to make you son happy to go to different places.  Yes, I know it's difficult finding anywhere suitable, you need to persevere. 

 My son is about to move into his own flat next month, with lots of support.  He's confident about the move and I'm confident it will work.  Even two years ago this would have seemed impossible.

He went from being a day pupil to becoming a boarder at 16, but came home very regularly.  After school he went to a farm college, again coming home regularly.  Then he went to a large care home, small care home, shared accommodation with 2 others, and now his own flat.  It's been a rocky road at times, but he's always had my full support and could always trust me to "sort out" things if necessary.

In the last five years I've had kidney cancer and my husband died suddenly from a heart attack.  The knowledge that he had his own life and his own home whatever happened to us was of great comfort.  Pretending you will live together is a luxury you cannot afford when you have a special child.  One day, somehow, they will need to live without you, hopefully in many years to come.

It always seemed better to me that I could give my son full support at every step of the way to an independent life.  He now does things away from home which he would never do at home  -  uses a washing machine to do his own clothes for example.  He too has severe learning difficulties, unable to read, write, or do any Maths.  

I found it really helpful through the years to keep in touch with mothers of children like mine, only slightly older.  In this way you can learn how the system works, and make it work for you.

Good luck for the future.   

hi, was just wondering if anyone can tell me any thing about the IQ threshold the social services use to determine wether or not a person with a LD qualifies for support. thanx.

Hello Witchie, I see from your profile that you live in Northern Ireland. I don’t know if the system is the same there but in my experience, certainly in my Local Authority in the south of England the Social Services department do not use an IQ test to determine whether someone can receive support form the Community Care budget. On request for support they allocate a social worker to carry out a comprehensive assessment of the persons needs. These needs are then checked against the “Eligibility Criteria” that each Local Authority has to produce to comply with the Governments “Fair Access to Care Services” legislation. I presume this legislation applies to where you live and if so someone with the "moderate" needs you mention should meet the necessary criteria. I hope this answers your query and you have success with your local Social Services department.. Please let us know how you get on.

My son is 12 with severe autism and SLD he doesn't speak and still we hold out hope that one day he will.

I hate thinking about the future because if the services are anything like education then there is nothing to hope for.

I am also a pushy parent been to 3 tribunals and lost every time, everything is budget driven, professionals will only ever provide or suggest what's within their budgets and not individual needs.

hi there star,everything you have said rings true for me, i have 3 older children who all have no problems and are all high acheivers educationaly, then i have a set of twins who are 5, we were bissfully unaware of any issues with either until i tried to toilet train my little girl, after iv=nvolving (useless )health visitor and  after 6 months of stress,worry, frustration an heart ache,she started school. within a month of starting school, we were called in and ed psychs were involved, then came a suggestion she should be referred to peads, asked my h visitor why, who advised she may have autism, i ve not heard from her since that was 2 yrs ago!!! she entered ls class at 4, and has made no progress since, we been advised she has severe learning diff, but still waiting on pead diagnosis,she shows autistic traits but opinion is divided between the many, many people who have one!! she has been dry for the last month which is  brilliant!!! but she is still hideously constipated and soils daily, i ve had to leave my full time job to go in2 school to change her, and i m on call as such at all times, over the last yr her twin has show more and more challenging behavoir, i had to chase ed psych and behavoiral support for him school jus convinced he was naughty!!  the school didnt agree with the report an things have now really got hard since they ve gone bk 2 school, i ve gone bk to my g.p an asked to be r e referred to peads for him, now we jus have tyo wait an unknown quantity of time for reports to be compiled blah blah blah, i feel like no one is ever straight with me, im sick of fighting for my kids rights to come up against negative, negative, negative, no one ever tells about the good things they do, only the bad, it seems all school ever do is tell me one thing one min then  completely contradictory the next, it is so soul destroying sometimes, u get so worn out with constantly pushing and fighting with people, i ve jus been told she needs to go in to a specialist unit as ls unit not suitable for her needs, more uphevel for her, yet they told me last yr that option may not come to frutition ever, but def not for a long time, now , no they changed their mind!!! raaaaah!!!!  i would love to chat to anyone else who d like to have the occasional rant with me, but also to talk about the good things in life as well so we can keep perspective!!!

Hi bhw666,

Welcome to the forum!

Thank you for sharing your experiences, and I really hope that we can be of some help and support to you and your family. I wondered if you had also looked at the National Autistic Society website, which has comprehensive information on diagnosis and support for families. Their website is www.nas.org.uk

If you have any specific questions, or just want a listening ear you could also try our Learning Disability Helpline on 0808 808 1111.

Best wishes,

Lucy

Dear bhw666,

You might also find IPSEA useful they are the Independent Panel for Special Education Advice.

IPSEA is a registered charity (established in 1983) offering free and independent advice to parents of children with special educational needs in England and Wales on issues including local authorities' legal duties to assess and provide for children with special educational needs; exclusion of children with special needs/disabilities and actions or inaction by local authorities and/or schools which discriminate against children with disabilities.

IPSEA is a volunteer-based organisation and many of the volunteers providing telephone advice and Tribunal support are themselves parents of children with special educational needs who have been helped by IPSEA in the past. Their website is www.ipsea.org.uk

Best wishes,

Lucy

I am extremely worried about my Son, I am trying to get him supported housing for the future! He has ADHD and was statements ';special needs' all through school. He is nearly 20 but acts and looks about 15. I need to go back to work soon but so depressed about Stevens future! Just don't know where else i can go or what to do! Most Agencies say he needs a learning disability NOT learning difficulty! Whats the difference? Hope someone can help?

HI

I don't know what the difference is but, My thoughts are with you. It is so hard to balance your own life and commitments and try to plan for your childs future and look after them. It is so easy to get depressed yourself, I find I am struggling with this.I hope things get better for you :)

Suzanne

Hi, I am parent to a child with special educational needs and am also a Teaching Assistant in a School. I would like to hear other parents views of how they feel their childrens schools handle both their childs needs and how approachable they are when parents have difficulties/suggestions/worries etc. I have had problems with two schools who play 'god' and refer to themselves as EXPERTS! ha we all know the only experts are ourselves. Also it is hard as some schools misjudge parents and label them as 'trouble makers' when they raise concerns. I also see that some schools are really supportive including the school I work in. I can see both sides of the coin! I can see where parents can be too demanding without seeing the whole picture from the schools side. I can see where communication plays a HUGE part and feel that if this is better then alot of misunderstandings could be avoided.

I would really appreciate your comments about this ie., Is your school understanding, what do they do to help you and your child? Do you feel you are treated unfairly? Is your child unhappy at School? What would you like to see change for the better? How could things be improved?

Hi everyone,  I am new to this forum so please bear with me but am feeling really desperate and do hope someone can advise at least where we stand as I am sure by now I am labelled as the “Mother from Hell” by everyone involved.

My daughter is 17 at present and has been at residential school since she was 8 yrs old.  We did everything possible to keep her at home but none of the special needs schools in our area could cope with her difficulties – she has SLD, severe autism, challenging behaviour and suffers from cluster epilepsy. 

Our much treasured daughter is now fast approaching 18 yrs of age and we have just found out that basically once she is 18, my husband and I lose parental control even though she has the mental age of a 3 yr old in a teenager’s body.  If you offered her a bar of chocolate or a million pounds she would opt for the chocolate – no danger!

We are hoping for her to move into supported living once she leaves school at 19 yrs – she is presently in the process of changing residential schools to one only an hour away from home as opposed to the current 2 hours each way but that is another story as the delays have been horrendous.

We have had virtually no information at all about what happens when she comes under adult services and have received no transition information or had any specific meetings.  All we have had is a very casual conversation about what we would like for our daughter and attended the usual bi annual review meetings at her residential school but those are more about her schooling of course and not really about the future as an adult.

We are now desperately worried that Adult Services could decide our daughter is better living an hour away from home which would be devastating to us as we are older parents and my husband already suffers with osteo arthritis which is progressive and certainly in years to come may not be able to do a 2 hour round trip just to spend a couple of hours with our daughter.  As we have no family or close friends who could help either and taxis would be just too expensive for this sort of distance this is creating a massive amount of worry to us as to what could happen long term.  We struggle to obtain honest , direct answers from Child Services and nobody seems to understand we have been living for this for years in the hope that after such a long time finally we would have our only child just a short drive away and now are worried to death that we have no say once she is 18 other than “our views will be taken into consideration” which doesn’t put our minds at rest at all.  Has anyone moved their child from residential school to supported living and if so could I please ask how it all went and were your wishes taken into consideration please? They keep suggesting an Advocate who could ask for our daughter’s views which is ridiculous really as she only speaks odd words like a toddler and I honestly don’t feel I could trust anyone with such an important decision in our lives.  Please help if you can?

Hello.
I am very sorry to hear about your situation. Being a 'Parent from Hell' is sometimes an excellent approach to take when dealing with Social Services, as long as you can mix it with a bit of praise when they do the right thing! Otherwise they just tend to ignore you.

I am not familiar with the detailed arrangements in Residential Special School, but I do know about supported living and residential care homes.
There are often very poor links between Children's and Adult's services, so your experience is not uncommon.
It sounds like the Council are wanting to take your views into consideration, but you are right to be sceptical.

Getting an advocate involved is an excellent idea. Sadly, although the Council will take your views into consideration, they have to act solely in the best interest of your daughter. ( I know that you also want to act in your daughter's best interest too).
If your daughter is not able to clearly express her view then it would be really handy to have an advocate involved. The advocate is not there to make any decisions for anyone, they are just there to speak up on behalf of your daughter. Because they are an independent advocate, when they speak the Council usually listens.

The Council has to keep in mind the fact that sometimes what parents want to happen may not always be in the best interest of the young person, so having an independent advocate involved just helps reassure the Council that the young person's best interests are being voiced, not only the parent's views.
A decent advocate will meet up with the young person and their family a few times before the key meetings and get to understand the relationship. Most advocates are trained to understand the importance of maintaining family links. So the advocate will basically be asking questions like, "if the young person was able to express their view on where they want to live, what would they be likely to say?", "would the young person be happy with the property that the Council is proposing?", "what does the young person want to achieve in their life?", "what things does the young person value in their life?" etc.
The advocate is a useful ally to have, and they will fight Social Services alongside you if they believe your daughter's needs and wishes are being ignored.

It would not be unreasonable for a family and an advocate to say that a young person wants to live close enough to their family so that they can maintain their family links. The Council may accept that, but then just say that there is no suitable supported living accommodation which is near your family home. That is usually rubbish.
Supported living schemes can be set up anywhere. Usually the only legitimate limiting factor is the non-availability of a suitable building if a person has needs a specially adapted property.Otherwise, a supported living scheme can be set up in any property, anywhere.
Setting up a new supported living scheme can be quite complex for hard pressed Social Workers, but it can be done. It might just take a bit of time to co-ordinate.

Returning to your query;
Yes, get an advocate, they will be a real help.
When you have meetings with the School, ask them what the Transition Plan is for your daughter.

Ask whether or not there is a full 'care needs assessment' in place, and whether or not there is a 'person centred plan'. This assessment and person centred plan ought to include a bit about links with the family and where your daughter might want to live in the future.

You can also ask for details of the adult Community Learning Disability Team who will take over responsibility for co-ordinating your daughter's support when she leaves school. Then contact the CLDT and ask them to let you know which social worker will be assigned to your daughter, and what the plan is in respect of the transition. You might try to arrange a meeting with them, but don't be surprised if they decline. Technically their responsibility doesn't start until your daughter becomes an adult, but a good CLDT will agree to meet and start the preparations in advance.

Let me know if this has been useful, or if there is anything else I can help with. If you could identify on this forum the local authority area where you live then there may be some families who have more local advice on how that local authority operates in these situations.

Very best regards
Adrian

My son, 33 has SLD, due to a botched birth.  I too was so worried about my son's future like you, and had the same sort of replies.  He has now been living in a rented flat, by himself, for two years.  I can't believe how well he copes, beyond my wildest dreams.  It is absolutely spotless (actually better than mine, but then he does have support for 4 hours every evening), he is so happy, so confident, it's wonderful to see him like this.  The best advice I was given was to keep him in education as long as possible, he was 22 when he left college.  What has been very apparent in the last 10 years is that he has kept developing.  The most important thing of all is to make sure that your child is always being stretched, challenged, so that he reaches the very best he can. Never accept second best education.  I'm sure my files must say "Beware, Attila the Hun".  I've appealed to the Secreatary of State, made countless formal complaints, and am currently dealing with the Ombudsman.  The only thing that matters is the wellbeing of your child.  If you can't stand up for him, why should anyone else?  Take care. 

Hi

I can't believe it's taken me so long to find this forum - what a wonderful idea. My son also has SLD and is now almost 15. I can totally relate to the pushy parent thing, having pushed since he was 8 months old to get diagnoses and recognition etc.

I am very worried as we are about to begin transition to adult living under the 'new and improved' scheme in Notts. His first review is this Wednesday - any advice would be very welcome.

Thanks,

Sue

I'm desperate...my 19 year old son has just moved in with a family who are manipulating and controlling him. unfortunately, he seems reasonably happy with this at this time. He has moderate learning difficulties and ADD. He 'came across' a 17 year old girl just 8 weeks ago now he is ready to turn his back on all the family members and friends that love and have cared for him all his life.  Without boring everyone with all of the details, this family have verbally abused us, via telephone, text etc  They have now managed to take him from us (his decision, but with a lot of 'controlling') and is living with them. All discussions with Police etc have come to nothing -"he is an adult and can do what he wants"...  He presents as perfectly 'normal' but is clueless with  money, unable to read/write and so very immature and a dreadful judge of character.  I am positive they are after his benefits, which, I have had to lose control over, and of letting her get pregnant in order to get housing!  This is such a mess.  We dont know which way to turn or how to protect him.  A report is being put into Social Services as we speak, but apparently we have no right of any input, or to know the outcome.  It is getting increasingly difficult to contact him and he doesnt answer the phone or his phone is taken over and we receive texts from her.  He is becoming totally isolated from us.  This is just a very brief summary and there has been much more happen.  How can we handle this? Has anyone had a similar experience?  My heart is aching, I just want him home.  He just wanted a girlfriend and this one was, unfortunately, the one to get her claws into him, aided and abetted by her family.  His disabilities are mostly hidden which makes for no one taking us seriously.

Sorry for the ramble.....I cant bear the thought of him being used and abused like this and unable to do anything.  We are however, managing to keep just a little communication going with him...but so very difficult, even after 19 years, to know what is going on in his head.

Thank you

Your son is undoubtedly a "vulnerable adult" and Adult Services have a duty towards him, to safeguard him.  Are you the DWP appointee?  They always prefer family to be appointee, if the other lot have demanded his benefits and appointeeship, then you need to speak to the DWP.  My best friend works for them at a high level and they are well aware of people trying to manipulate the vulnerable, so they should be understanding.  My son also has SLD, seems fairly normal but has lots of similar problems which are semi hidden.  I do hope you get this sorted out asap.

Thank you so much for that, there has been so much going on. As suspected, they tried to claim homelessness, I had told my son from the outset that I would put housing in the picture. They had put him in a half way house, (he would have been put into a hostel with just anybody if we had not managed to 'find' a telephone number for his housing support worker) we had managed to speak to housing stressing how vulnerable he is. They have apparently served him with an eviction notice now as he is not homeless. We hoped he would come home. Instead he is refusing to even talk to us after 'what we have done to him', (refused to say he was homeless) Now we dont know where he is, even if he is okay...we are coming up against a brick wall all the time! I was his DWP appointee until this kicked off, he has now demanded his bank cards etc and the Police said we had to give him this plus his benefits info. He (or they) have now been in touch with benefits to take us out of the loop....saying he wants to deal with his own money. He hasnt a clue where money is concerned. His bank had £350 when they took his card 2 weeks ago, it is now all gone.
I will speak to to DWP again, although I did speak to them and put everything in writing, but have had no response from them at all.
I am going to take legal advice now, as I really dont know which way to turn. Everyone is saying "let him learn the hard way"...how the hell can I even think of doing that! Seems the more we try to protect him, the more he hates us. He was such a loving, family lad up to a few months ago. Breaks my heart. Will keep you informed. Thank you once again, it does help to talk!