If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Anyone know how i can get help for my son?

reecereece Posts: 6Member Listener
edited January 30 in Autism and Aspergers
My son is 11yrs and has been diagnosed with Mild Aspergers ADHD. Due to diagnosis being mild I get no support for my son from
anyone. I also have another child of 9 yrs and am a single parent.
I have given up my bedroom so my son can have his own space and now share a room with my daughter as we are not entitled to be moved. I work part time but keep having time of to support my son with his issues. 
School provide no support as not enough funding, DLA got rejected due to my sons needs being the same as any other child his age. My son holds it all together at school through the day then off loads with tantrums when he comes home to me and his sister. 
No one wants to help us. School indentified Concerns. Received the Diagnosis. Now door shuts.    Anyone know of any help I can get? 

Replies

  • Antonia_ScopeAntonia_Scope Posts: 1,783Member Pioneering
    Hi @reece ;

    Thank you for sharing your story with us. I can only imagine how difficult it has been for you and your family. I am sorry to hear you have no support. Our members may be able to offer you some support soon.
  • reecereece Posts: 6Member Listener
  • thespicemanthespiceman Posts: 4,649Community champion Disability Gamechanger
    Hello @reece Sorry what you are going through.

    Have you contacted The Autistic Society who also deal with Asperger's for any additional support, advice.

    Help line 020 7833 2299.

    Monday to Thursday. 10.am to 4pm.

    Friday 9am to 3pm.

    Hope that helps we as a community are here to help and advise.  Be supportive.

    Keep in touch.

    Please take care.

    @thespiceman


  • GeoarkGeoark Posts: 1,133Community champion Pioneering
    Hi Reece

    My daughter began the diagnosis process when she was 11 and was diagnosed with Asperger's when she was 12. She was, and still is at 26, very good at keeping it together while out of the home, but can let loose when she gets home.

    At your son's age when she started showing signs that things were getting too much for her I would send her to her room. That was where the things she found comforting and she would return to the living room when she was much calmer. After a while she started to learn to take herself to her room when things were getting too much for her.

    Early on we got help from the local anti social behaviour team to set some rules, as she would come from school, stomp up the stairs and bang her door until told to stop and then play her music loud. They worked with her to set some rules, so it was acceptable to bang her door once, her music could be loud for an hour, but then would have to be turned down to something reasonable. We would not disturb her until she asked for a drink. This worked for us as she is very rule orientated. As she got older her behaviour improved in that she did not feel the need to slam the door or have her music so loud.

    Things got a lot worse when she started secondary school, and this is easy to understand. Larger classrooms, far more people and stimulation, a more chaotic environment - different classrooms, teachers, more personal responsibility. I think it is also an age where, with all the changes, they become much more aware of how different they are. We were lucky in that the school were supportive of her and we had a good relationship with the SENCO who became our main point of contact when there were issues. 

    That is not to say it was plain sailing, at one meeting I ended it by telling the SENCO and year mentor I expected them to behave professionally and if one had information the other needed I expected them share that information. I also told them if I had another meeting like that one I would bang their heads together until they got the message. I had to go external when the safe area for our daughter and others was also used for disruptive students. As my daughter said she did not want to go there as it was the place for 'bad children'. I only went outside the school when they informed me that they would not be changing this practice.

    If it helps my daughter went on to do A levels and got a first at university and has worked for the same employer for the last 5 years. So there is hope.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • GeoarkGeoark Posts: 1,133Community champion Pioneering
    @reece as the last post was long I  have decided to do a seperate one concerning DLA. This was a benefit I resisted applying for as I saw much of what we did as a normal part of parenting. So when I did apply for it and she awarded I was surprised, but also could not have imagined the possitive impact it had on our daughter.

    It allowed us to give her pocket money, £50 per month, which gave her financial independence and scope to explore who she was. To give an example, after saving up to buy her first electric guitar the next thing she bought was accessories. When she showed me what she had bought she put the things she thought I would find acceptable at the top, those I had refused to buy for her at the bottom. She got upset when I liked everything and could not understand. As I said I would not buy them with my money, as long as she did not buy alchohol or drugs what she bought with her money was her choice. As I mentioned in my previous post she was into music and so was able to buy tickets to see her favourite bands.

    It also meant when she started university, she chose not to renew DLA when she got to 18, her student grant came in a couple of months late, but was able to budget on a limited amount until it came through.

    The problem with DLA is it has a generic form and if you are working on it on your own it can be difficult to get the right information across. Yes a lot of it can be seen as normal parenting or what all children go through, but what is not normal is the potential impacts. 

    To give an example, does she need help with bathing or showering? The answer to this was yes, as she would set the temperature too high our low. Was she able to travel independently? Yes, but only after visiting the area several times with one of her parents so she could get used to the main route, and alternative routes there and back home. This was important since if there was any issues with the usual route her behaviour would make her vulnerable and likely to make poor choices.

    The DLA allowed her to travel around London a lot on her own, going to concerts and pursuing her own interests allowed her to make friends based on mutual interests.

    It also allowed us to continue having the internet and sky. These helped her to increase her knowledge and do well in her education. If you get working tax credit this would also increase.

    I would strongly encourage you to reapply for DLA as there is plenty of help and advice on how to tackle the questions like https://www.autism.org.uk/about/benefits-care/benefits/children/parents-carers-tips.aspx

    You could also ask for advice on different questions here, as we have some very knowledgable members.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • reecereece Posts: 6Member Listener
    @Geoark, Thank you for taking the time to explain your daughters journey. It’s very encouraging to hear about your daughter even though every child is different, it still eases me and prepares me for what lays ahead during transition to Secondary School,
    I only hope the Senco for Secondary School is more Suppotive than the Primary.

    Your points on applying for DLA was very helpful, I did apply on the basis of all the extra support given to my son that was not neeed for younger sibling but was still rejected at Tribunal Appeal due to son having age appropriate needs. 

    I atttend the Tribunal Court alone and maybe nerves played a part of me not explaining enough. The rejection letter stated you can’t appeal further unless law broken making decision or if circumstances change.

    Do you think I should reapply when my son starts Secondary School?
    Citezen Advice have advised that due to my son being diagnosed with Mild Asperger this would always go against me regarding getting support
  • GeoarkGeoark Posts: 1,133Community champion Pioneering
    @reece

    With regards to re-applying for DLA, I would suggest checking someone with far more knowledge, and who could view the decision letter from the appeal court regarding what they have actually said.

    It would depend on what would constitute a change in circumstances.

    I keep trying to find a nice way to put the next bit, but will just come out with it. There is a general attitude in many areas that unless a child is failing they don't need help. It is one I hate, as I believe intervention early on can have a huge difference later on, where as at present they are happy to let our children fail before they will consider putting in support and we are supposed to hope that it doesn't come too late. Often that support seems to be a pupil referal unit which, unless it specialises in autism, could be an even more toxic environment for our children.

    Sorry I could not be more helpful, but will mention IPSEA again if you are having issues with the school.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • Emma_ScopeEmma_Scope Posts: 46Navigate Courageous
    Hi @reece

    It sounds as if you had a tough time of it, I hope things started to move in the right direction.

    I wondered if this may be of interest to you. Scope have recently launched a new service called Navigate. Navigate provides a six week programme of online and telephone support to parents who have a child going through diagnosis or have a child who has recently been diagnosed with a disability (within 12 months). The aim is to provide parents of a child with a disability with emotional and practical support and help them navigate these early stages. It also gives parents a chance to talk through things in a safe space.

    If you think this may be something that could benefit you please visit https://www.scope.org.uk/family-services/navigate or call 0808 801 0510

    Best Wishes.
    Emma Bailey
    Parent Advisor
    Navigate Team at Scope
Sign in or join us to comment.