Well. I did it. I told Jake he is not alone. He is part of a group of individuals who share similar struggles and gifts, and that being a part of this group means that he is autistic.
He didn’t ask me loads of questions.
He didn’t wonder if this made him special or if it was in his brain. He didn’t ask if I was autistic too or if Aiden was or what it meant.
He didn’t say anything.
He nodded. And kept playing Lego.
I waited. He didn’t mention it at all that night.
He didn’t mention it the next day.
I have to say. It was anti-climatic. I was hoping that he would have questions. My determination to not make a big deal of it stopped me from elaborating on the things that I have wondered. He will wonder things one day, I’m sure.
He didn’t go to school and tell all his classmates. I had kind of worried about that.
It was almost as though it never happened.
Except it did. And the quiet, not a big deal nature of it was good.
The other day at his Tae Kwon Do class Jake had an accident and hurt himself. Before warm-ups. Before class even started. His dad was surprised at the severity of the meltdown that ensued, and class was almost half over before he managed to convince Jake to try again.
This label is important. The teacher didn’t make a big deal out of the screaming 6 year old with his arms wrapped around his fathers’ ankles. Dear dad was totally embarrassed, but he responded calmly, knowing that his kid can be a struggle. That once he is thrown off, it is hard to reset.
They came home, with Jake happy and victorious, and dad burned out and frustrated. Dad and I discussed strategies, positive reinforcements for calming down quickly, and new visuals that could help. We strategized. Jake will learn to strategize.
Then we talked about what the other parents might have thought and how hard it is to know what to say or do when we are out in public and this kind of thing happens. Truthfully, it is happening less all the time. But what is there to say? Do we make excuses, announce his labels for the public, run from the situation and continue the meltdown in private, give up on Tae Kwon Do? I just don’t know. Those moments are hard.
I talked with Jake about it after they came home and tried to explain how dad was feeling. I think Jake understood. He said that if he was the dad and his kid did that he would be very upset. He has an unusual way of speaking when he is being empathetic, and I think he was close to getting what was going on. He is so good, so intrinsically good, I believe that he will get it.
And so, I am proud of myself and my family. We love our autistic Jake. We would do anything for him and his happiness, and we work hard with him so that we can all get through each day. One day at a time. And one of these days we will talk again about being autistic and what it means.
I guess I am becoming a neurodiversity advocate. I am not reluctant, merely surprised. This wasn’t in my plans. I didn’t know I had it in me. I didn’t know I needed to.
I have come a long way this past year.
I have decided that I am ready to write about what I think I believe, now. That sentence is not meant to be wishy washy, but things are changing so fast that it is hard to keep up. A year ago I wrote about what I thought I believed then. A year from now I suspect that I will have continued to try to keep up and may have grown my beliefs some again.
Here it is for now, then.
I don’t want to change Jake. I don’t want to cure Jake. I don’t want to teach Jake to blend in or suffer through therapy where he works at becoming less obviously autistic. I want to help Jake learn how to thrive in situations that are not easy for him. I want to help Jake learn to navigate conversations so that he can maintain true friendships with people who value him for who he is. I want Jake to learn how to conquer his anxieties and fears so that he is not limited by them.
This may not seem revolutionary, if you have been following my progression on this blog. It is something that has been rolling around in my mind though, as I am reading Neurotribes and looking at the reactions from the autistic community. It is also something that has become more important to me as I am struggling to find the courage to explain autism to Jake. I also have been invited to speak to another class at my school about autism and how to relate to a friend with autism. I feel like it is so important to ground myself in my beliefs and to know where I am coming from. It impacts where I go, what I say, and how I act.
I believe that in our community, the ABA therapists who are working with our family are united with us in our goals and are compassionate, kind individuals who see Jake as a person and who have the time and resources to help him. Therefore, and because the government supports us with funding for the therapy, we are happy to have them be a part of his learning team.
Over the course of his maturation and growth, I am hopeful that he will learn tricks and tools to help him in situations where autism is a disability. Situations like job interviews, where shifting eyes suggest that he is untrustworthy, would be more successful for him if he could sustain eye contact or find another way to demonstrate his competence.
There is something about people who struggle. They are made stronger. The Bible says that it is easier for a wealthy man to fit through the eye of a needle than to enter the kingdom of heaven. When life is simple and easy, we don’t understand how much we need God, how much we need community, and how much we have to give. Jake is fortunate that he has us, faith, and a strong community to stand with him as he faces his struggles.
Rather than treating autism as something that needs to be corrected, advocates want it to be seen as something to be accommodated, and that disability is largely situational. If someone is in a wheelchair, you can either focus on curing the reason they’re in the wheelchair and let them wait at the bottom of the stairs until you’re done, or you can build a ramp. Neurodiversity advocates want ramps for our brains. What exactly that looks like is still a work in progress, but I encourage professionals to embrace it. Work with us so we can live our best lives.
I feel like sometimes I am the one who needs the therapy. I need someone to come in to my house and reward me for staying calm when Jake sings the same three notes at top volume for over 20 minutes. I need someone to reward me for realizing when he is feeling overwhelmed and when he is strategically driving his little brother insane with purpose. I would love to be coached on how to come up with things to help everyone stay cool and comfortable while I am making dinner. Unfortunately, there is no funding for that.
an active, consistent, and arduous practice of unlearning and re-evaluating, in which a person of privilege seeks to operate in solidarity with a marginalized group of people
I am that person of privilege. Social situations make sense to me. I thrive on conversation. I talk out my feelings. I excel in interviews, in group situations, and don’t notice when things are out of order. I can keep my train of thought for several days, or several minutes, keep two conversations going while cooking and keeping an eye on three kids.
But I love autistic people. I love people who are disabled. I will stand with them work with them.
I believe that autism is a disability.
The distinction people are making is between the medical model and social model of disability. The medical model of disability, for those who may be unfamiliar, puts an emphasis on a disability being something ‘wrong’ with a person. In that model, disability is something to be corrected. Disability itself is seen as a source of reduced quality of life. The social model of disability, on the other hand, focuses on negative attitudes and physical barriers imposed by society, rather than perceived “flaws” in the individual. Neurodiversity rejects the medical model. It does not reject the concept of disability or deny that impairments exist. The primary difference is how disability and impairments are considered and addressed.
I had a conversation last summer with my sister-in-law about disability. She said that it seems like being autistic is a disability mainly because we (society) don’t understand, don’t make it easy, and put up obstacles for people who do not belong to the neurotypical majority. She suggested that being autistic was almost like being evolutionarily advanced, in a sort of way, except that the society is restricting the advancement. It resonated with me and I am still chewing on the idea.
I believe that the goal of therapy is to support Jake and teach him how to manage being autistic. I hope that learning strategies that work for him will increase his confidence and abilities to negotiate within our world and not lose any of what makes him who he is.
I believe that I have a role to play in educating all those I can. Everyone who knows him, everyone who knows an autistic, everyone who knows someone who is different and who is a minority and is therefore marginalized by the way our society runs. I can’t tell those in human resources that when hiring, to hire every shifty eyed individual. However, I can increase acceptance and understanding of different ways of communicating.
Most importantly, I can have faith in Jake. I believe in him. I believe in his abilities to solve problems. I believe in his dreams. I believe in his heart, his gifts, and his growth. I believe that he is created by a fierce and loving God who knows what he is doing. I can wait, I can watch. I can hope and I can pray. And I can find what I believe and stand firm in it.
I struggle with balance. There are women who juggle a career, hobbies, friendships, family relationships, children, yoga, healthy eating, and a spouse and make it look easy. I am not that woman. I love those women. They inspire me and make me feel like cheering for them. As much as it looks easy, I know it is not. I am constantly trying to work on self-improvement. I want to do better with balance, I want to take better care of myself and do better in my relationships.
This past weekend I was able to go away on a women’s retreat with about 25 ladies from my church. The focus and purpose of the weekend was rest. I shared a room with a dear beloved friend, who didn’t mind that I wanted some time to rest and be alone. I left my children and my husband and my house and my mess and my stress behind. Oh! It was so amazing.
I prayed. I read. I wrote. I rested. I reflected. I slept. I laughed and I coloured in my brand new colouring book for grown-ups who can’t settle into any other hobbies or stick with yoga.
Every person needs to take one day away. A day in which one consciously separates the past from the future. Jobs, family, employers, and friends can exist one day without any one of us, and if our egos permit us to confess, they could exist eternally in our absence. Each person deserves a day away in which no problems are confronted, no solutions searched for. Each of us needs to withdraw from the cares which will not withdraw from us. ― Maya Angelou, Wouldn’t Take Nothing for My Journey Now
What’s more, the blessings have continued into the week. Thanks to my parents loving and wanting to spend time with our kids, my husband also had some time and space to himself this weekend. He worked on cleaning the house! What a treat. We even had some time to reconnect and talk before we had to pick up the kids and get back into the noise. Then last night I went for a manicure and had my nails done. And today I was able to sneak away while my husband was home for Remembrance Day and go for a massage.
I feel better.
Jake has been clingy and really missed me. He may be also getting sick. But I feel like I have enough energy to love him and snuggle him as much as he needs. Aiden is going through some struggles, I think he feels like he is powerless and left out a bit. But I feel like I have enough time and energy to play attentively and do things he wants to do. Penny is just such a dear. She is no trouble. But if she decides to throw her food at the cat or unpack all the books from the shelf, I am totally cool.
And so, because I am smart and I can figure this all out, I can see that while it is impractical to go away every weekend and spoil myself all the time, taking better care of myself and allowing myself to be alone and quiet results in clear benefits for everyone I love.
I need to make rest a priority. Daily. Weekly. Monthly. Yearly. I need to be alone and not worry. I need to be quiet and not plan, not organize, not strategize. It’s one of those things I have long understood, from an academic perspective. However, I have never experienced it quite like this. I think the years since I became a mother have flown by. While I knew I needed space and rest, I didn’t know how it could possibly be obtained when everyone needed me so much. Now I feel that everyone needs me to have that space and rest. I believe that I will actually be able to mother better, to give them more, if I take more for me. I feel like it has changed for me from being an impossible dream to being a crucial reality.
I will have to make some pretty firm boundaries with myself, as this is exactly the type of thing that I think of, and then it slips away from me and I never can recapture it. I resolve not to lose this one. I will rest.
He makes me lie down in green pastures; He leads me beside quiet waters. He restores my soul; He guides me in the paths of righteousness For His name’s sake.
Halloween was interesting. This year, Jake he decided that he liked scary decorations and actually wanted to put some up in our yard. I declined. He wore a Chewbacca costume with a mask. That he loved. A mask! Covering his entire face. This is incredible to me. His first Halloween he was a tiny baby and I put him in a tiger pajama set. When he was one he wore a turtle outfit that was soft and warm and he had no choice about. When he was two he wore a full monkey costume that I picked out again. He didn’t love it, didn’t get it, and never wore it again. Then when he was three and four he wore a hooded sweater with an animal print on it with no face paint and only my word that it was a costume. Truly, he looked adorable, like adorable Jake in a sweater. When he was five I carefully prepped him and set him up in a fireman outfit. It was simple and easy and he practiced at home even a few times.
When he was three and four he didn’t once wear pajamas to preschool on pajama days. He has never done his hair crazy on a crazy hair day. He has not worn a career day costume, a twin day costume, or a hero day costume.
But this year he wore a full Wookie costume. And he loved it.
Our little family had joyfully trick or treated to about 8 houses in the neighbourhood when he slipped on a patch of wet cement and fell down. He dissolved in tears and lost all control, all joy, all peace, all hope of continuing. He had to go home and spent the rest of the evening answering the door and handing out candy with his sweet Oma.
Aiden continued trick or treating another 40 minutes or so. It was a blast. He was so thrilled and we enjoyed the time with just him immensely. I am getting better at seeing what Jake needs to be happy is just different, and that it is okay so long as he really is happy, and he was.
When they were reunited, the boys exchanged stories about the other trick or treaters they had seen and ate some treats. Aiden had so much more candy that I poured all of it into one big bowl and declared it was for them both to share. Mom’s word is law here, and they accepted it without any problem. After all, they were eating candy.
I am left in awe and wonder at the whole event. The differences between my two sons seem to be increasing right now. Despite Jake’s growth, progress, and maturation, Aiden is always going to be the one who wants to be out later. He will be the one who wants to join the baseball team, to go down the waterslide. Aiden will be picking between girls in high school. Aiden will be popular, confident, athletic and social. Aiden will have three times as much candy. Aiden will have a date for the dance. Aiden will not need me like Jake does. He will need me, but it will not be the same.
It’s a blessing, to be sure, that Jake is autistic and doesn’t notice all of this yet. By the time Aiden notices, he will be older and I am praying, he will be deeply compassionate and loving towards his brother. I am praying for a strong and true friendship between them, that when they get to middle and high school, that they can support each other, be friends with each other’s friends, and stand beside each other through their tough times.
Aiden hit the pillow Halloween night and fell asleep to peaceful dreamland instantly. He’s so much like me. Jake lay awake, replaying the day, I’m sure, and listening to us downstairs as we answered the door and continued to give candy to the stragglers. He couldn’t sleep until I had told him what their costumes were. They are so different, my boys. And I love them both so much.