Today begins Autism Awareness month. Over the last 5 years I spent every day of April (and many throughout the year) promoting Autism Awareness. I don't regret my daily awareness social media posts. I don't regret that because of them I have helped others become aware, recognise ASD in their own children, recognise the ASD issues in my child and help him, and ACCEPT ASD in all it's forms.
I also do not regret the many people who left my life because of those posts. The ignorant and self absorbed 'friends' who were annoyed by ONE post a day from me showing up on their news feeds. I even cut ties with family over those posts. Sending me a message to say you are 'unfriending' me on facebook because my one post a day clogged your news feed is not only an indicator of your lack of friends, but of your rudeness and general attitude which is probably the reason for your lack of friends in the first place. What I found funny was in each case, I was expected to apologise and to remain in contact with these people after the unfriending. Funny because they had to be joking right?
You may think that posting awareness messages was a negative thing to have lost large number of family and friends from my life over those 5 years. But that's not the case. Good riddance to them all I say. My awareness posts brought about the end of these relationships sooner rather than later and saved me a lot of wasted time and effort so it was a good way of thinning the herd.
The thing about being an ASD parent, is that you find yourself going through stages. There is the struggle before diagnosis, the bitter sweet shock and sadness at diagnosis, the grief and 'why us' stage, the confusion and finding your feet stage, the endless therapy stage, the school issues stage ... the list goes on. Many people get stuck in the early stages and never move on from that, but many of us move through the stages and get to the acceptance stage. The place in our journey where we accept who WE are as parents, accept ASD for what it is, accept our kids for the awesome children they are, and work towards our futures. We don't look for cures, we stop reading the endless stream of articles listing causes. We stop living in the blame game, stop looking for the exit door.
I'm at the Maintenance / Acceptance / Celebration stage. The "we've worked things out" and are managing stage, where the hard work of the past years is paying off. Where we might want to take on new challenges or just enjoy the place we are in. We can see the good things about ASD, we can celebrate them. That's us now.
We've been through diagnosis, we've been through therapies, we've been through school issues, we've survived and found what works for us.
What works for us is homeschooling.
Honestly, it's the biggest and best change we ever made to our lives and the benefits to the ASD issues we were facing will far outweigh any struggles we've had in finding our feet in the homeschooling journey.
Now I will say, that homeschooling is NOT for everyone, it is NOT possible for many financially, physically or mentally. It is not the answer for everyone with ASD. However it was the answer for us. It meant no need for medication, it meant no more depression and suicidal thoughts from my son, it meant improved health, it meant a huge reduction in anxiety, it meant less sensory overload, it meant less aggravation and frustration. Quite simply, it worked for us or I wouldn't still be doing it. We are in our 4th year of homeschooling and don't plan on stopping any time soon. It is by no means "a cure" as ASD is a way of life and a way of thinking NOT a disease, but it is the best option for us.
What improvements happened for us with homeschooling?
- Physical changes: no more daily anxiety vomiting which meant no more stomach problems, weight gain (my son had not gained weight since he was 3.5 years old and started Kindy and was almost 7 yrs old when we started homeschooling), colour back in his cheeks, no more black bags under his eyes, sleeping through the night for the first time in his life, he smiled, he laughed, he played. He also grew a lot. Did you know, according to medical research, that anxious children have stunted growth?
- Emotional changes: my son was happy again. There was no daily tears, no anger at everything, frustration at everything, refusal of everything. He was no longer in shut down or meltdown mode every day. He would get excited rather than frightened. He was able to self regulate his emotions more and he was able to be calm and content for the first time. He was able to talk through his emotions. He felt he could really BE himself. That he wasn't being judged or singled out for his ASD issues.
- Mental Health changes: after being suicidal, coming to us at 6 years old and asking which was the least upsetting way for a parent to find their child after ending their lives, my son's mental health did a huge back flip. He has NEVER gotten to a suicidal state since then (when we removed him from school). Even years of therapy with a psychologist had not been able to help his mental depressive state, but homeschooling did. His severe anxiety was significantly reduced and he was able to function again. No more hiding under chairs and tables, no more social withdrawal. He was chatty, he would approach people to talk and make friends, he was relaxed. One of the other huge positives, is that in your home, there is no class bully. There is no playground bully. You will probably still encounter a bully or two in a homeschool social group, but the difference being that the child has more self confidence than when at school, they have parent back up and support and the problems are dealt with directly and not brushed aside by schools.
- Educational changes: my son has a very high IQ but struggled at school with little help and was getting C's and D's in all his subjects despite us being told he was in the highest portion of the class (doesn't THAT say something about our education system and mainstream schooling!). He was at the start of Grade 2 and could not read, spell, do basics. At home he was able to get one on one help with me, no distractions, no noise, no sensory overload, could go at his pace, could do a lot of revision work and concentrate on problem areas, could advance in areas he was good at. I could easily see where the deficits were and was able to pin point learning disorders that the school was unable to notice. We were then able to have those things tested for and diagnosed and put in learning supports and strategies. My son's first year at home we used a Distance Education school and his report card from them was straight A's and he received a Principals Academic Award. So not only were his results more reflective of his intelligence, but he was able to learn in a way more appropriate to his learning difficulties. My son now enjoys learning, he willingly gets a book to read. I can cater his education specifically to his needs.
- Sensory changes: I'd like to think that as children with sensory needs get older, that they all develop a tolerance to things that previously resulted in meltdowns or shutdowns. However this is usually a gradual process. For us, the first month at home there were huge improvements. Almost as if a switch was flicked as many issues appeared to change immediately. I think that in a school environment, EVERYTHING sensory is happening all at once and that's where the overload comes in and when the child falls apart. Many hold it together at school then come home and explode in meltdowns. Trust me, that meltdown after school child, is NOT the one you are trying to teach at home. At home, the sensory issues are somewhat separate from each other or in milder forms. There might be some noise, but it will only be one or two people talking or a TV in the background or a single light buzzing. But not 30 people talking in the classroom (with the rest of the school talking just a building away), ten lights per room buzzing, plus the noise of people walking, pencils writing on paper, paper shuffling, sniffling kids, school bell ringing, a sport class happening outside, a music class' noise filtering through the school, chairs being scuffed on the floor, a ceiling fan rattling etc. Being able to reduce the number of sensory issues is much easier at home. You already would have set up your home with their sensory needs in mind so there are lots of safe places at home for them to unwind. They will still have meltdowns but not as often, not as easily triggered and you are not as exhausted as you were in the past so can deal with them better and have a little more patience. My son can now tolerate a lot of sensory input that in the past he would not have been.
- Social changes: while ASD children have social difficulties, they are not anti-social when in comfortable situations. Another great thing to remember is that ASD children are often selectively social. In school, children experience forced interaction which is not socialising, it is not a choice and it is not fun. This for an ASD child can be difficult to navigate and cope with. They are told they should have friends but most do not have anything in common with these peers other than sharing the same birth year. Many will withdraw, prefer to be alone, get bullied, and not enjoy 'making' friends. At school my son was bullied, he was alone most lunchtimes, he spent his play time at the library to avoid getting bullied in the playground, he did not have any friends, he was not comfortable being around others. At home, my son is alone. He is an only child. He LOVES being alone in his OWN space. But not having forced interactions every day for 6+ hours means that he is open to being social now. When he goes somewhere he is not hiding from yet another social situation, he enjoys it and is open to making friends. He will have a conversation rather than a monotone response to answers. He will seek out children to play with. He will be present in activities rather than hiding from everything. Homeschooling can be isolating and as a parent you need to be pro-active in sourcing activities etc. There can be bad socialising experiences (and yes we experienced them and had set backs) in homeschooling but in general and in the longer term for us it has been positive and much better in terms of social development than when at school. It also means that we can have a day of being social with friends (yes homeschooling for us has meant making real friends!) and then a day of alone time at home learning to balance things out and not get too overloaded and tired.
So homeschooling for us has not only been the answer to so many ASD issues we faced, but it has been the way for us to move forward, find happiness again and embrace being ourselves, ASD and all.
This year, my drive to get out and educate everyone, to post daily awareness messages to everyone I know, has fallen away somewhat. I am in a different head space. Maybe because I am in the end stages of the process? Like many others in my situation, I feel I've passed the baton onto the next wave of ASD parents I know. They are in the trenches right now and have the fighting spirit to get out there and spread the word. I feel like I've done my time in the trenches, done my tours of duty. This Warrior Mum will always be a warrior, don't get me wrong, but I feel I've stepped slightly off the ASD battle field and as we currently have other medical issues to deal with and I feel my frontline experience is needed in a new battlefield next door. It's part of being a parent I think, conquer one thing and then refocus and deal with the next.
So I am not abandoning the Autism Awareness bandwagon, I am simply stepping aside for fresh louder voices to carry it forward. We live "ASD" every day, we spread awareness every day.
I'd like to finish off this post with something to watch. This children's cartoon is great to watch, great to get your children to watch and so helpful in spreading awareness, understanding and acceptance. If you are going to do anything this April for Autism Awareness month, then let this be it. If it changes or improves the way you view Autism and Aspergers in children, then this blog post was worth it. If your children learn how to be friends with an ASD child then it will make many ASD children and their parents very happy.
While our journey with ASD will never be over, and it will have it's ups and downs, it will have it's 3 steps forward and 2 steps back ..... it's not a fight for us now, it's a truce, a peace treaty. You are always on guard - but you can relax a little. At the end of the day, I hope all ASD families get to this place in their journeys too. Having awareness, understanding and acceptance of this Diffability (Difference in Ability not Disability) is the KEY to moving forward.