It took me a couple of days to let Louie’s diagnosis fully sink in. Even though I always knew in my heart he was autistic, the moment I walked out of the assessment centre I broke down in tears. My husband held me as I cried for Louie and our family and the uncertainty of what the future held. So what happens now? The children’s mental health team told me they would be in touch and then there we were in the car park, alone.
On the journey home I began googling what help was available. I was shocked at what I found and the help that was out there for families with autistic children. Through out the last year I have attended many support groups and therapies with Louie and found that many parents in similar situations to ours were unaware of the financial support and other kinds of help available.
In this post I will outline what I have found and how they have benefited our family. I live in quite an affluent area and at times when I have spoken about the help I receive, have been looked down upon. This does no bother me in the slightest. I will apply and take everything I can to ensure my son is thriving and enjoying life. I hope you find this post enlightening. This is the advice that I believe is kept quiet and not given to you when you leave your diagnosis or at any of the follow ups further from that day.
DLA – Disability Living Allowance
Some people will probably have heard of DLA or PIPS as they call the adult version now. For those of you who don’t, DLA is a benefit for children who need supervision because they have a disability or health condition or/and additional care. What most people may not realise is that your child does not need an official diagnosis to apply for this benefit and likewise, if your child does have a diagnosis, it does not always mean they will be eligible.
There are two main components of DLA; Mobility and Care. The form is a lengthy and detailed pack and not something to complete on a whim. I will blog a post in the near future with tips and advice I feel may help. This was the first form on my list and I will admit it took me a while to commit to it. Although I said previously how I would take everything I could for my son, it was something about the term “disabled” that kept stopping me. Was he disabled? At this point my ignorance was still in the mind-set of physical disabilities. I have educated myself a lot since these early days and am now a firm believer that mental health disabilities need more awareness and to lose the stigma attached to them.
I receive this money 4 weekly and I have used it over the past year for:
- Sensory equipment and other items for his room.
- Day trips to certain places I know he will enjoy and broaden his experiences.
- Clothing – mainly trainers and shoes. Louie spends a lot of time on his knees, crawling (he can walk but is just one of his traits) and so the front of his shoes and knees of his trousers wear very quickly.
- Diet – Louie follows a gluten-free diet which is linked to his autism. I will explain in a later post.
- Educational toys.
A carer is classed as someone who spends at least 35 hours a week caring for a child or adult in receipt of DLA. You do not need to live with the person or be related to them. Obviously as Louie’s mum I do live with him. Also if you earn no more than £116 per week after tax and NI you are still eligible. Again this was one I wrestled with subconsciously, of course I was his carer I was his mum wasn’t that my job? I knew that going back to teaching was not going to be an option for me for quite a few years yet and raising a family with just my husband’s wage is extremely difficult at times. And so I applied and it was granted.
Special assistance is something that has become so vital to our lives. We travel back and forth to Belfast a lot to visit my husband’s family, usually by air. It wasn’t up until our last visit I was told by another autism mum that you could ask for “special assistance” at the airports. I rang Easy Jet ahead of our journey to make them aware and was asked to bring any documents outlining Louie’s condition as evidence. When we arrived we had to find the Special Assistance desk where I was given something to wear to indicate we required assistance. We then went to check in and was taken through security via a wheel chair accessible lane. For us this was already a God send as Louie hates queues and crowds and as you may know Stansted is always busy! We was then helped through security, which again can be so stressful for us as a family. At boarding we were escorted to the front of the queue to board the plane first. We were given the option to board first or last. We have found that if we get somewhere before it gets busy Louie can cope better with a situation rather than for example walking onto a plane full of people. At landing we asked if we could leave last once everyone else was off. I can not begin to tell you the difference this made to our journey to Ireland and the journey back was even better from Belfast airport! If you are dreading a holiday due to flying please ask for this special assistance, it made such a positive impact to our trip.
There are also a few other places I have come across so far that I have asked for special assistance as listed below:
Doctors Surgery: Visiting the doctors for Louie and I was one of the most stressful situations imaginable. It would always mean countless meltdowns which for Louie display as a high-pitched scream, rolling on the floor, punching, kicking and spitting at the general public. Many times I was met with dirty looks, vile comments, including one woman yelling at Louie telling him Father Christmas wouldn’t be coming and people complaining to reception. I then read on a forum that you can ask for special assistance at the doctors. The next time I went I spoke to the reception manager and she was very accommodating. I explained how the waiting room was what Louie found most difficult. Now when we arrive the receptionist escorts us to a little vacant office along the corridor and the doctor comes and finds us once they are ready for us.
Hospitals: Much the same as doctors surgeries, I have also mentioned Louie’s condition when I was having to go for scans with my youngest and at A and E a couple of times. Each time the staff have been exceptionally understanding and allowed us to wait in a separate area.
Cinema: My friend who works as a carer told me about this. I avoided the cinema as even though Louie loves going we often have to leave half way through which is devastating for Alice as well as Louie. The reason being that he simply can not handle the close proximity of other people around him, rustling, chewing popcorn, talking etc. Also walking through the narrow walkway when entering or leaving, with the dark lighting and people around him upsets him. Now I always book the special assistance viewing boxes. By booking these seats we enter the screen a completely different route and it is just us 3 in the box with an accessible toilet and space for Louie to get out of his seat and have a little stretch and wander. Since we have used these seats Louie has sat through every film and thoroughly enjoyed himself!
Holiday Camps: When we have booked short trips at caravan parks I have spoken to reception and they have allowed us to check in earlier and also made sure our caravan is positioned away from busier areas, roads, cliffs etc.
Once you have been awarded DLA and carer’s allowance many places offer concessions as long as you have the proof when booking. Some people may wonder why we should be discounted but I feel this is an incentive to visit more places as a family. Many times before this I have arrived for a day out somewhere only for us to have to leave early having paid full price. For a while before his diagnosis we just stopped going anywhere as we just did not have the money to keep wasting.
Family Fund is a grant you can apply for if you are raising a disabled or seriously ill child. You can awarded a grant once a year. The money can go towards holiday vouchers, days out, equipment and many other positive things for your child and family. The website below gives all details. I am yet to apply but will do this year.
Other help available:
If you are in the receipt of child tax credits it is worth letting them know of any changes regarding DLA as you may eligible for the “disabled child element.” Council Tax also offer a reduction for some disabilities. Caps on water bills can also be applied in certain circumstances.
Any other hints and tips for parents beginning their journey please leave a comment. Thanks for reading!