Today marks World Autism Awareness Day and the perfect time to give you an update from our Autism family. With covid and the lockdowns, I haven’t really had the time to reflect and update our journey as an autism family. Today is the perfect day to do that. It also lets me reflect on where we are since my last Autism Awareness Day update in 2019.
Ethan is the one who has autism, he can’t express to me how he thinks and feels. So these updates are from our perspective. How we think we are getting on as a family living in the world of autism. It is an ongoing learning journey and I’m sure one we don’t always get right. I can only hope that one day Ethan will be able to express to me how autism makes him feel. How we can help him in a better way to meet his wants and needs.
Speech and Commication
I had to learn very early on in our autism journey that communication isn’t all about speech. I would pray for the day when Ethan could talk to me. We had to learn some Makaton signs as well as introduce the use of PECS, a picture exchange communication system.
It felt like Ethan was non-verbal for quite some time. I would now say that Ethan sits in what you would call pre-verbal. At nearly twelve, he has words and sentences that he can use, with us in his everyday-to-day life. As long as we stick to his routine we can get by. We have also had to learn how to communicate with him. Reducing the number of words we use. Plain and simple words and phrases. I have no idea how he would get on in an unfamiliar person’s company. Would he be able to get his needs met? Would he be able to express them?
Conversations aren’t something that we can really have with Ethan. He can normally give us one-word answers to simple routine questions we may ask him. If you ask him a question out of the blue he can’t understand what we are saying. I now know this is actually a step we all have to learn when we learn how to talk. His speech therapy teachers are aiming to work on this with him in his school targets. Perhaps a conversation will be something I will be able to have with him in the future.
Sleep, or lack of
We always used to say that Ethan was a good sleeper as a baby. We thought the turning point for this was when I returned to work when he was eleven months old. But now I think about it perhaps Ethan never slept well. I remember we had to move him into his room earlier than I wanted to as he would keep Darren awake. His sister, on the other hand, stayed in our room until she was six months old. I had to stay with him until he fell asleep. Leaving him alone to fall asleep in his room was never an option.
Not being able to sleep tends to go hand in hand with an autism diagnosis. Its to do with the body not producing enough melatonin. We also know that Ethan doesn’t know how to self-soothe. He doesn’t have a favourite teddy that helps him sleep. His only attachment is with us. He needs us to sleep and he wakes in the night many times to find out where we are. Being a light sleeper Darren has picked up this nighttime routine in our autism family. It isn’t easy for him running on very little sleep.
Medication For Sleep
You can actually be prescribed melatonin to help with sleep. It took us a long time to feel comfortable with the idea of using medication for sleep. Unfortunately, melatonin didn’t help with Ethan’s sleep. It would help him fall to sleep but it wouldn’t keep him asleep. We actually think it gave him nightmares as he would wake up very upset. Although the option for medication is still there for Ethan we tend to avoid its use.
Sensory and Sleep Assesments
Just as we were going into lockdown Ethan was actually starting the process of a sensory and sleep assessment. The sensory report was very interesting as it gave us some insight into Ethan’s behaviours and his need for doing certain things. The sleep assessment however wasn’t what we were expecting. I think we were hoping it was going to help find all the answers. To be honest the advice we were given felt like it came from an episode of Super Nanny. Techniques we had tried many times. Having watched our son make himself physically sick because we aren’t in his room at bedtime wasn’t something we really wanted to put him through again.
Changing the Sleep Routine
As Ethan was getting older the sleep routine was causing our autism family tension. It was taking longer and longer for Ethan to go to sleep. Meaning that Darren was getting less of an evening. Ethan was starting to spend time in our room watching his iPad. Perhaps in lockdown, he discovered he needed his own space. After Ethan’s eleventh birthday we changed the bedtime routine. He still goes to his room at the same time as his sister. He takes his iPad or Nintendo Switch and waits for when we are ready to go to bed. At this time Darren goes into his room and stays with him until he falls asleep.
Changing the routine has taken the tension away from the bedtime routine. Putting Ethan to bed later does not mean that Ethan will go to sleep any quicker. It also doesn’t mean that he won’t wake up through the night. We are also still a family who is used to early starts. In the world of autism, sleep is not required!
Getting Out and About
Ethan loves getting out and about. He loves visiting places and he loves theme parks. Recently his anxiety around going to places has been hard to manage. I’m unsure if it’s because of his age and being more aware. Or perhaps it is covid and we try to keep things secret until the last minute because of cancellations. It could even be because of his excitement. Covid took away two years of adventures. When out Ethan needs to know what’s next. He constantly asks the question and things can get very tense between us all. Journeys in the car can be quite interesting and sometimes possibly dangerous. Google maps often help us in these moments, giving Ethan the answers that he needs. I need to work on making more visuals for Ethan to help prepare him when going out and about.
Being Given a Blue Badge
When Ethan was first diagnosed with autism I looked into the criteria for applying for a blue badge. It basically said if you want a badge because of autism don’t ask. Recently these criteria changed supposedly making it easier for people with invisible disabilities to apply. Of course, this is based on need, not just a diagnosis. This means there are lots of hoops to jump through.
Ethan doesn’t physically need a blue badge but finding a car par parking space can become quite a distressing battleground. Making driving at these times very dangerous. Last year I decided I was ready for the blud badge battle and started to apply. All of the questions are based on why you need to have access to parking closer to places. Having an invisible disability this wasn’t our need for Ethan to have a blue badge. I replied to every question stating in detail what happens in the car if we can’t find a parking space in Ethan’s expected time frame.
For an invisibility disability, a specialist has to agree and confirm your request. Finding this person to confirm my answers wasn’t easy in a pandemic. Ethan hadn’t seen a doctor in over two years for his autism. They also rejected the documentation supplied by his teacher from his specialist school. Thinking our battle was over the occupational therapist who compiled Ethan’s recent sensory report agreed to answer the blue badge questionnaire. To our surprise, with the occupational therapist’s help, Ethan was given a blue badge for three years. This has really helped to make car journeys slightly easier for us all.
At the age of five, car seat belts were such a concern for us. Ethan had got too big for the harness in his car seat. He wasn’t ready for the next natural step of using the car seat belt with his car seat. He would unclip the belt and climb out of his car seat whenever he wanted to. Thankfully the discovery of Crelling Harnesses helped us. They kept Ethan in his seat, keeping us all safe. At nearly twelve Ethan no longer needs a Crelling Harnesses and hasn’t had done for a few years. He does unbuckle his seat belt as the car is coming to a stop but that is Ethan. It’s funny how something that caused so much worry and stress can suddenly pass.
Meltdowns are still very much a part of Ethan’s life. They aren’t temper tantrums happing because he hasn’t got his own way about something. I think they are moments in time when he doesn’t feel he is understood or able to express himself. I can only explain them as Ethan getting trapped in a circle of emotion. One which he can only come out of when he is ready to. A moment in time when our world has to stop and we have to support Ethan through it.
Ethan is still very limited in what he will eat and drink. It has changed over the years and we go through phases. Mostly yellow foods are a winner. As well as cake, everyone likes cake right? With the limited food choices, our travels and days out always have to be planned around food. We need to make sure that Ethan can eat wherever we go. Even if we are visiting friends and family.
Being An Autism Sibling
Being autism parents we don’t have the experience of being a sibling of someone with autism. But we can see how our autism family life affects Little E. We can see that she feels like Ethan gets lots of attention. She, therefore, seeks attention from us in different ways, sometimes negative. It is hard when out as Ethan’s needs do need to be met first to make sure we all have a good day. We need to work on spending more alone time with Little E. Treating her to her own special days out. We are trying to do this as best we can around our work and life commitments. I just hope that when she grows up she looks back at this time knowing we were doing the best we can.
Autism is such a vast spectrum that this post can only let you see just some of the challenges Ethan faces. There are so many things we do in our day to day life that are different because we are an autism family. Like all family life, there are many ups and downs as well as different challenges. Autism really does keep us on our toes.