Today is a very special anniversary. It was one year today that J received his formal diagnosis of Autism Spectrum Disorder. I can’t quite believe that a year has gone past already.
The gap between starting to assessment process and getting our diagnosis was torture. I don’t mean to sound dramatic but the ‘limbo’ you live in is so hard. There was part of me that thought “Please say I’m not mad? Am I imagining problems that aren’t there?” and others that thought “please let me be wrong!”. But mostly it was ‘hurry the f up and decide’ as I hated that mid gap. It was hard because part of me was thinking ‘if this is just toddler behaviour I want to put things in place to stop it’ but then I thought ‘if it is neurological then I can’t change it, I need to find strategies’. That’s not to say I was looking for an excuse for J’s behaviours but I did want an answer so we could move forward.
On the day of diagnosis I had a million thoughts go through my head:
“Was it my fault?”
“What is his future going to be like?”
“Will he go to mainstream school?”
“Will he grow up to be lonely and have no friends”
“Are people going to believe me?”
“Will I get help?”
“Will people think I’m a bad mum?”
“Will he be able to learn to drive and be independent?”
It’s funny how J’s whole life flashed in front of my eyes. However, I was also relieved. It wasn’t in my head, there was a reason for J’s behaviours and that meant there were strategies that can help him. Once I had an emotional cry back home, I set about being productive. I signed up to every Autism group I could find, downloaded info, read blog posts etc. I wanted to know what support we could access and how. In some respects having a diagnosis opens a lot of doors but in as with every avenue in life, funding means that a lot of services and charities require a lot more.
So in this past year:
- Became members of our local branch of the National Autistic Society.
- Became members of our local Parent Carers group.
- Completed the Early Bird course (EXTREMELY HELPFUL – very recommended).
- Signed up for Community Dentist and Ophthalmologist with experience of children with additional needs.
- Attended workshops on Sensory Needs, EHCP’s and developing messy play tolerance.
- Started at a new Day Nursery (J’s previous preschool closed) and started at an SEN Nursery too.
- Applied for access passes at Theme Parks and days out (Again very recommended)
- Moved on specialist speech therapy to community plus team as J’s speech improves.
- Started at Tumble Tots gymnastics group to develop physical and social skills.
- Have a house full of visual timetables, visual sequence boards, now and next boards and ‘rule reminders’.
- Started on calcium vitamin tablets due to his restricted diet (combination of sensory issues and allergies).
- Created a sensory space in our home for calming and regulating emotion.
Thankfully J’s health is good. His allergies are under control, and asthma has improved since we started the ‘milk reintroduction ladder’. The only real issue with his health is due to his restricted diet. J continues to only eat dry food which really limits certain nutritional areas. The dietician has recommended multivitamins with calcium in them (not as easy to find as you think). However, J has lost weight and is not gaining it easily. This is being monitored by GP at the moment.
J is also long sighted. Due to his sensory issues we have to see an optician who has experience with young children and ASD. We see them at the Child Development Centre and she’s amazing. As J is young this may correct itself so we’ll see. The only reason I even took him was because he kept bringing toys and objects very close to his eyes and I wasn’t sure if it was autism based (sensory need) or health. It’s always best to double check these things rather than just blaming Autism for everything.
J is a VERY ‘clumsy’/uncoordinated child. He has no fear and very little danger awareness. If he wants to get from A to C he wont consider B might be in the way. This has resulted in many accidents and injuries. Thankfully none have needed A&E but we’ve come close. J needs a lot of supervision, more than his peers when it comes to using equipment, crossing the road, walking places. He also gets tired and achy easily so we still use the buggy for days out and trips to town. We’re hoping to buy a special needs buggy soon but at £300 + it’s not going to be anytime soon.
J is in a dual placement. He spends 2 mornings in mainstream nursery and 2 days in SEN nursery. It’s best of both worlds as he gets to develop social skills amongst his peers in the mainstream, but gets the specialised support to development educationally and his skills to cope with mainstream at the SEN setting. Mainstream nursery is challenging for J. He enjoys it once he’s there and does have children who approach him to play, which is lovely as I really worried he’d be the ‘odd child’ who plays alone and never gets invited to parties. However, it’s busy and full of sensory challenges. There’s noise, lights, crowding, smells from lunch, routines he might not want to join in with and a lot of children to contend with.
This wont change as mainstream school will be the same so he has to learn to cope and have strategies to help him. J sadly couldn’t have a support assistant due to funding. This means he has to share his keyperson with a significant amount of children so he can get frustrated. I have often had to sign incident forms and accident forms. There have been improvements though. He is now tolerating younger children better. Previously he couldn’t deal with the unpredictability of little children and would push them away or down to the floor. Now he is more caring towards them, I wont say 100% of the time as they do still upset him and cause him anxiety when he set things up and they move them out of ‘order’…but better! J benefits from visuals so has his PECS book available, ‘now and next board’ for transitioning tasks, has a sensory light table where he can have alone time to de-escalate when things have got to him a bit too much. I created a emotions board for them which we use at home to talk through emotions and give range of things to choose to calm himself. There’s no point trying to talk to him during a meltdown or upset-you need visuals.
SEN nursery has done J the world of good. The environment is perfect for J. Lots of adults, open space, uncluttered and they use Makaton and visuals for everything. They have an understanding of ASD and the day to day challenges, combined with experience of things to try and approaches to use. J has only been a few weeks but already they have seen so much from an educational point of view…they even got him to do a painting. I think the difference here is that this environment allows him to relax and show the skills he has. In mainstream he is so busy dealing with the sensory and social needs that he can’t show his potential as well. I’m not sure what this means for the future in education. Academically J is doing fantastically for his age and his understanding is great…but his sensory and social difficulties stop this from showing so does that mean mainstream wont work? I don’t know. I guess it depends on the support and funding available.
It’s a strange thing. During the assessment process and for the first couple of months after diagnosis your life is full of appointments and professionals. You get phone calls from the specialist health visitors, visits from specialist nursery nurse and meetings with local educational professionals. You see your paediatrician and specialists such as speech and occupational therapy. Then everything goes quite. These people are there in the background if I need to phone them for advise but otherwise you are just left too it.
I admit that I struggle with this and think its unfair. I think that there should be more contact. I can see how families can slip through cracks and end up in dangerous and emotionally challenging positions. I am lucky to have the professional knowledge as an Early Years Professional to know when to ask for help, when something isn’t quite right and to a degree what we are entitled to. For someone with no background in these services I can imagine it’s a lonely world. You have to be willing to shout and stomp your feet to get help. This isn’t because people don’t want to help it’s (as always) down to funding. There is a limit to caseloads, resources and man power…however should our kids be left behind because of this? Hmmm.
Home life is a juggling act. We live by routines and making sure J is prepared for things. Spontaneity is hard and can create long lasting anxiety (and meltdown or shutdowns). Generally speaking, J is amazing and wonderful. He makes me laugh with his antics and he loves to playing with his star wars figures and space ships, Lego people and cars. He loves the Ipad! We do a lot of ‘home education’ together especially with STEM, phonics and numeracy. At home he gets 1:1 attention and access to resources that are geared to him and his interests.
Our home is like a giant scrap book. There are symbols everywhere. He has choices boards, ‘now and next’ cards, PECS book, ‘J’s week’ calendar, visual ruleboard, reward chart and sequence boards. We still use Makaton to reinforce language and listening skills. These all help to keep harmony. We also have a sensory area set up to help ‘de-escalate’ J when he is having meltdowns or sensory overload. We also have wobbelboards and lights to stimulate him when he has had a shutdown or is anxious. These are soooo helpful…for my sanity too!
I am lucky to have a close knit family and friends so J is often visiting grandparents, seeing his cousins and spending time with my friends children (his friends). All the adults know J’s needs and so he is catered for wherever we go, which means a lot. If I’m honest, we avoid a lot of places such as soft play and some events in town. This is simple because I know J’s limitations. At soft play he gets anxious about others, or he copies children’s behaviour which can either cause the other child to get annoyed or he gets in trouble. We either go when it’s quieter (which wont be an option when he’s in full time school) or find alternatives to do.
We have learnt strategies to help with everyday life such as supermarkets, dentists, town etc. A combination of ear defenders, symbol cards, use of the buggy and the cover for ‘sensory space’, distraction toys and knowing our limitations (Eg: J needs to be in a trolley for shopping…else it’s just a disaster). I rarely take J places myself, unless I can strap him in the buggy, as he needs supervision and sometimes that takes two people when out somewhere busy.
I will say, to anybody who is new to diagnosis. Don’t expect everyone to be positive. You will encounter people who say daft comments or think they know best. Most people will be accommodating and understanding but there’s always those who wont be willing to even acknowledge your child’s additional needs (sadly, this may even be family). You need to build a thick skin and don’t let the few outweigh the amazing people out there.
As I said earlier, you will have so many therapies and workshop after diagnosis. This is to give you the skills and strategies to use at home. After this it goes quiet (this may depend on your area and what they offer/funding available). Although we have lots of professionals in the background we are now down to just our paediatrician (for review appointments) and speech therapy (who we haven’t heard from since beginning of august). That’s it. It does make you feel a bit abandoned but I do a lot at home. I remember the activities from our food based play workshops (specialist nursery nurse) and we do sensory and food play at home regularly, I remember the resources and activities from the sensory workshop (occupational therapy) and we buy them and use them to stimulate J or to bring him back down. I use the PECS book to boost language skills and practise our speech activities, including the social communication side of it (speech therapy).
There are workshops and things you can attend which you can pay for. They aren’t NHS run but are still worth looking into. There are workshops run by local parent carer partnerships, companies such as The Girl with the Curly Hair Project and consultancy agencies such as Autism Consultancy International.
You can also check out support agencies such as ‘Special Educational Needs and Disabilities Information and Advice Support Service‘ (SENDIASS) and The National Autistic Society. There’s also options to pay for private therapies such as speech therapy or physiotherapy. Some people have support via social services disabilities team or home support through charities. It’s worth googling what’s available in your area.
So, in terms of the next year we have some exciting stuff going on. We are in the process of looking at Primary Schools for J and have to put in our admissions forms in January. I can’t believe this time next year my little boy will be a big school boy…where’s the tissues? We are hoping to go on holiday abroad next summer (somewhere hot, with a beach) so that will be interesting for J who seems to love hotel and travelling (thanks to new fascination with maps and road signs). We will hopefully have some more speech therapy to continue to move J forward in his ever growing speech, and develop his social communication skills. We have a review with ophthalmology next month so we can see how J’s eyes are, and we have a review with the paediatrician.
I also have big plans for J to become a billionaire using his maths skills and problem solving abilities, so he can send me on spa days and exotic holidays but that may be a bit too much forward planning, haha. Thanks for joining us on our journey and for all the love and support.