What I Want You To Know: Having a child with Asperger’s Syndrome is a joy

I wrote this note because I am not comfortable talking about this topic– but I talk around it all the time. I go back and forth between thinking it is best to let my son “fly under the radar” or “label” him or just turn back the clock 30 years to when he would be ‘quirky’ and let it at that. I submitted this to “Rage Against the Minivan“. “What I Want You to Know ;is a series ;of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face.” 

——

What I want you to know: Having a child with Asperger’s Syndrome is a joy

We spend lots of time building tracks and towers.

I want you to know that sometimes I wish my other child had Asperger’s too. Even as a newborn, he had the same personality he has now. It is not easy to be a toddler that does not like change or transitions. The world is new.

I expected my son to enjoy preschool, play dates and birthday parties. I had friends that were pregnant when I was and we had play dates together. I thought that our children would be best friends.

My boys call their my mom “Butterfly” instead of Grandmother. She is a math whiz and a bridge champion. She is forever telling me my son is normal. I guess it’s all relative. (pun intended)

I learned the hard way that groups, surprises and new experiences meant meltdowns. Outings with friends were a disaster. He would cling to me, he would fall apart, and we would leave early. I watched other children playing together while my son would not get off my lap. I gave up on play dates. I did not have mom friends I could relate to. My son could tell you the 50 states in order (and their borders) when he was 2, but he hated birthday parties. For a time it was lonely for us. I think every parent comes to that place where you have to let go of your expectation of what you child is going to be like, in my case, autism led me there.

We spent a lot of time at museums and parks. I learned what made my son feel comfortable. I sat up at night and googled autism. I did not know if he had “it” or not. I did not know anything. It took a long time for me to understand that rigidity was not something that he could help. I lost my temper about things were because of his Asperger’s. I feel guilty about that; again, I’m not sure if it was avoidable.

I’ve learned to be patient with my son. I learned to see things from his point of view. This year when he was six, we had a play date where he left my side and played with his friend.

My son floated on a cloud of happiness about his new friend.

I want you to know that my child can make friends. My child makes connections with gregarious kids, the ones that love to play and let it go that my son is awkward. I love these kids because he blossoms when he is with them. I get to see a side of my son that is otherwise not possible. If you have a friendly little boy or girl that disregards the fact that sometimes my son won’t answer or look ;you in the eye, but finds a way to play with him anyhow you would know that a child with Asperger’s has feelings. He has as many feelings as you do, it is just that his feelings are in a maze and they have to wend their way through his anxieties and his need for order to get out. Sometimes he is so concerned about order and rules that he can’t make space for being a child.

Always making something beautiful

When people communicate online, feelings are easily hurt because text lacks nuance and inflection. My son has that same challenge face to face. He can’t read your body language or tone of voice, or if he can he does it so poorly that you are left feeling misunderstood. For the first six years of his life, while kids were soaking up expression, inflection and mingling with each other my son was oblivious. It’s obvious that groups of people overwhelm him, he chooses to stay silent or else if confronted he is awkward at best. He said that when people talk to him at school he “doesn’t expect that” or he feels “stunned”. The more people he is with, the more lost he gets. I understand how offense is taken. As I watched him change into a silent boy I knew we needed to get him tested. I am glad we did. The diagnosis of Asperger’s has connected me with real help.

What does that mean for him in grade school? Over the course of a school day, numerous unanticipated contacts build up and create stress. Now my son works on “managing his ball of energy” so that that stress comes out in swimming or swinging at the park instead of shouting and shoving. In small groups with time to react, it is much easier. He’s just like other kids in that regard, when he feels overwhelmed, he acts out. His teachers have insight, he has speech therapy to help him with open-ended communication and an IEP that sets him up for success in the classroom. I am incredibly grateful for these services. The school recognizes his challenges and specs out the work he has to do to be successful. He is held to a high standard.

I want you to know that autism is not a tragedy. We need people that see things differently.

Sunset with Saguaro Silhouettes kindergarten art project

My is a warm and friendly person. Yes it is more work to communicate with him–he is not a socially conforming person. As a school librarian I see all the kids developing on their own pace. Some are conforming, they form power blocs and band together watching each other for steps outside of expected behavior. Like “pink is for girls.” Other kids are sensitive and caught up in their own feelings. They like to play alone or with a few friends. They are sensitive to nature or fascinated by art. Some kids are logical. Some kids are attention seeking. Some so active they can’t settle. Most kids are a combination of it all, depending on the day. Autism is just one more way of looking at the world. My child plays best with kids that don’t expect him to follow a script and in small groups. The kids that are very verbal and looking for social conformity find my child frustrating. That’s okay. Those kids are socially adept. They daunt more than just the autistic kids. I want you to know that kids have many dimensions and they are all telling you the truth about themselves. Once I relented on what I expected my son to be and got to know who he was actually things are so much better.

I don’t like it when people say that someone with Asperger’s doesn’t have feelings, doesn’t need friends, is a super genius. I understand why you think that, but it isn’t true. He is not a robot. He feels things so intensely that he is overwhelmed. He can understand how you feel too. He’s been raised with as much respect and care as your child. But we fight a different battle than you do. His homework is social exchange and his playtime is math worksheets. Every year it gets easier as I work with him to support him instead of trying to change him.

I wanted to excuse my son from P.E. I “knew” it would be a nightmare. I held my tongue and gave my son’s growing maturity and his teacher a chance. It turns out his P.E. teacher is scheduled oriented, has high expectations and is a clear communicator. My son loves dodge ball and loves P.E. Lesson learned. Public school has been good for my son. I had the same fear about team sports. My son uses his ability to focus to make him a pleasure to coach. I watch him doing drills in the backyard and I think, look at you, loving sports. Maybe it is because he has been lucky with coaches that are very clear and fair when they speak. I learned that when he understands and feels confident, he moves mountains. After 1st grade, I learned not to pigeon hole him.

Both boys are overjoyed to reunite with their dad. We had been on the East Coast for two weeks before he joined us. This picture was taken at the airport.

Autism uses the symbol of the rainbow jigsaw in its awareness campaign. Before I knew my son was autistic, I knew he loved rainbows because they followed an order. I learned how important order and rules are to my son to help prevent surprises. I see the world in a new way because of my son. We talk about ocean currents, recycling and crop irrigation. We talk about Jesus. I think he is going to change the world, because if anyone is going to decode the language of dolphins or see a glimpse into the mystery of the weather it is my son with his love of patterns.

My friend Mandy made him a gorgeous cake for his 5th birthday.

Sometimes I think that Asperger’s should not be called a “disorder” because it is the insistence on order that makes my son who he is. I want you to know that Asperger’s is cool and sometimes, I think my son is on to something with the way he is oriented. If my son is in your child’s class, I want other kids to enjoy his unique gifts and reach out to him. They will find a loyal friend with a pure heart.

Advertisements

6 thoughts on “What I Want You To Know: Having a child with Asperger’s Syndrome is a joy

  1. AZ,

    Thank you for the lovely post and sharing your perspective on parenting a child with Aspergers. I enjoyed your video, too! Your little guy reminds me of my son, who delighted in learning the states.

    I must add that the rainbow cake is totally amazing! My son was OBSESSED with ROYGBIV for about 9 months. I wwill have to show him the cake.

    It is so nice to find other parents who see the joy behind autism. 🙂
    Lori

    Reply
  2. The look on his face of joy when the cake was cut is something I will never forget, he checked to make sure the colors were in order and he was over the moon—none of us had ever seen such a magical cake before (this was all pre-pinterest!) On the outside she had a cascade of ROYGBIV fondant butterflies. I love her for it.

    Reply
  3. Interesting; I had no idea how asperger’s affects someone. (I’m more familliar with severe ADHD.) Thanks for sharing it!
    (I do not know why the other web site was not willing to post it on theirs. The writing is concise, empathetic, and educational. Maybe wait a bit, tweak it, and try again?)
    Blessings,
    C. Dunamis

    Reply
    • Thank you for your nice comment. With respect to why my submission was not published, I think that Rage Against the Minivan has a full in box and many choices so the fact that it was not published is probably more about her having too many choices than anything else. I’m grateful to her series for inspiring me to write about something that I was keeping inside. Since I wrote this, several people I know have reached out to me and it has been a great thing for me as a parent.

      Reply
  4. Very well written! Thank you for sharing, I think bringing awareness is so important, as well as simply educating others. Love the video-what a smart kiddo and love that you highlight his amazingly good qualities!

    Reply
    • Thanks Shannie, I learned so much just this past month since writing about it. So much easier than being on my own. Thank you for visiting.

      Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s