Michelle Minner on What Autism is to me.
I wanted to share this with all of you since it was such a huge step. My son’s school’s PTA was holding a skating party at our local skating rink. It was for children in Pre-K through 2nd grade. I almost didn’t go, but I don’t get to take part in many school extra activities so I decided I might as well since it was close. My friend Crystal (she’s my best friend and Marcus calls her Auntie) took us.
When we got there, I was uncertain how Marcus would react because of the amount of people there. The music wasn’t too loud, but there were disco lights so I was worried about that to. He seemed fine at first, but when we got our skates, he was wanting nothing to do with them. Crystal put hers on first so he could see her do it, then he let us put his on. He protested a bit, but didn’t have a meltdown. Once we got his on, I put mine on so he could see.
I got up and stood him up, so far so good. Then I tried to get him to move to the wooden rink. He resisted and got rigid (it’s what he does when he’s about to go into fear meltdown. I told him it was ok, he didn’t have to go. I sat down with him on the floor, by the lockers, and he climbed in my lap and shoved his head in my chest (his way of hiding in public). I sat and held him, rocking him a little, debating on whether or not I should just leave and take him home. I decided to wait a bit so at least Crystal could skate a bit and have some fun.
There were four benches between us and the wooden rink. One facing us, the next two with a table between them, and the last one facing the rink. I was getting stiff from sitting on the floor so I ask him to sit with me on the first bench. He seemed ok with it so we moved. Once I was sitting on the bench, he demanded to be on my lap again so he could hide. I sat on the bench and snuggled him. Crystal decided to go skate and every time she did a lap, she would come off the rink and say hi to Marcus. This got him watching her.
I had no real expectations for him at this point, I figured at the very least it’s exposure to social situations which he doesn’t get much at home.
I was getting a back ache from sitting on the bench facing away from the rink, and turning to watch so I talked him into moving to the next bench with the table. This time he got up and climbed onto the bench on his own and sat next to me. He continued to watch his Auntie skate. I noticed he was starting to relax a bit. He saw someone eating pizza and wanted some so I had Crystal stay with him and I went and got pizza slices for the three of us. I sat on the next bench facing Marcus and Crystal and we ate. Marcus just kinda played with his, but he was happy so I didn’t care. After we were done, Marcus and I sat on the last bench facing the rink.
We were now only a foot or two away from the wooden floor, and Crystal was skating again. He watched her for a while. When there was only a half hour left of the skate session, he pointed out to the rink and said, “skate?” I asked him if he wanted to skate and he said, “Please?”. I was so proud of him. Crystal came over and we each took a hand and gently got him on the floor. Now being almost 40 and the least coordinated person I know, (I can trip and fall on my ass while just standing in one spot) It was kind on like the blind leading the blind. We managed to keep him up, but I fell and pulled a muscle in my leg.
I went and traded my skates in and put my tennis shoes on and just walked with him instead of skating next to him. He had such an amazing time. We went several laps and he got tired. We stepped onto the carpet on the other side of the rink and he saw the video games, specifically the driving ones and let go of my hand, and walked himself, in his skates, to them and sat in one, playing with the steering wheel.
When we got home he was passed out on the floor withing ten minutes.
It was an amazing night.
The first time I heard of Autism was on a crime show back when I was a kid. An autistic kid witnessed a murder and while they couldn’t speak, they could draw amazingly. It seemed to be a common theme among the few shows over time who would have a child or adult with Autism on it. The child or adult couldn’t talk or spoke in extremely limited phrases, but excelled beyond measure in another area.
Somewhere deep inside of me I must have had a sixth sense about my child because I was fascinated by the condition ever since I first heard of it. I didn’t do any research on it, I was pretty young, but the idea was always in the back of my mind. As I got older there was a movie about a young boy who witnessed his parents murder and he and his older sister were being seen by a therapist played by Bruce Willis in order to figure out what he saw. He couldn’t talk in his own words, only mimic other people.
Again I was fascinated but didn’t try to learn more. As I got older still, I was watching Scrubs and there was an episode where Perry’s friend’s child was playing with his son, and he figured out his friend’s kid had autism.
Each time I saw it on TV and movies, it was like hearing guitar strings plucked. The older I got, the louder the sound till that day when I was watching my son line his legos up in a straight line instead of building with them, his obsession with the ceiling fan, and his lack of words and strange facial expressions he would get, was like the guitar string was plucked so hard it snapped. That’s when I knew deep in my heart that my son was autistic.
Even then I didn’t want to face it. I think partially because I didn’t really understand what that meant, not in it’s fullness. I was he was going to be that teenager on a rooftop of that crime show I saw so many years ago, rocking back and forth and never speaking. I pretended there was nothing wrong with him. One day after we had just moved, I was unpacking a box and found my book, “What to Expect when you have a toddler”. On a whim I looked up Autism in it and the description it gave was too close to home to deny any longer. I called his doctor that day to get him in to be seen.
He had to wait four months for the official diagnosis, but his pediatrician told us that though he couldn’t make the official diagnosis, he could pretty much guarantee that Marcus was autistic. I finally started to read what ever I could get my hands on. I started with Jenny McCarthy’s book, “Louder than Words” and while my son didn’t have the seizures, he did have many of the characteristics her son had. I tried to change his diet to Gluten and Dairy free, but after a month, I didn’t see a difference so we switched him back to regular stuff. I have noticed that there are certain foods high in artificial coloring that do cause him distress, Fruit Loops and the generics are a good example.
I did learn the most important thing I could about Autism since he was diagnosed… THERE IS HOPE! I’m not looking to cure Autism, I truly believe that it’s a part of who they are, but I do want to find every treatment and therapy available to allow them to be the best they can be, to be able to have truly fulfilling lives. I want my son to be happy and functional and I know that it’s possible. If I could say one thing to parents just finding out about their child’s autism. Faith.
Whatever that word means for you. Faith in God, Goddess, Allah, Buddha, it doesn’t matter. What matters is to have Faith and know that as long as you are there to fight for your child and don’t give up, your child has a chance to grow.
Woke up this morning with my hips screaming at me, and couldn’t go back to sleep even after loading up on Advil. After a few hours I decided to move to the couch so I could moan in pain and grunt in discomfort with out waking my husband who had been up several times in the night with my son. After a couple of hours, my son woke up and came out to the living room. He’s pretty congested so he’s coughing a lot. He’s not running a fever thank goodness, but I still won’t let him go play outside till we get the cough under control. In any case, I was still hurting something fierce, only now the pain is in my shoulders and legs.
Once my husband got up, he was able to take over so I could get an hour or so nap in before he had to go to work. Marcus was pretty mellow for most of the day which I was grateful for.
Now Marcus is asleep, he was getting cranky, and normally I wouldn’t let him this late in the day, but as much as he’s coughing, he could probably use the rest. Now I’m just chilling, listening to Jackie Avancho courtesy of Spotify.
Tomorrow marks a big day for me. I start school again. This will be the fifth time I’ve tried to go to college.
The first time I went for a year to a community college, but I was young and decided I would rather move to Olympia and live with a boyfriend I met only a month before. A year later I had a beautiful daughter and tried to go back to school after her dad and I split up. I went for a quarter but realized that between working and school, I only ever saw my daughter when she was sleeping. So I left school. I would like to say I focused on my daughter but at the time I was also struggling with my alcoholism and spent much time in the bars near where I lived while my parents watched my daughter. A few years later I tried again, this time at a bigger school. I went for a year and during that time, left an abusive environment and then went off the deep-end in my alcoholism. I decided my drinking and sleeping all the time were more important so I quit school. A month or two later I had found my way on to the path of sobriety. I tried to go back to school but not much sooner did I loose my job and had to leave school to find a new job. I gave up after that.
Eight years later, I’m daring to go ahead again. I’ve been sober all this time and now have more motivation. I’ve since remarried and have a 3 year old son with Autism, and want the world for him. I’m not in an immediate position to afford a great deal for him, but I can go to school to learn to teach him. My husband is on board and my family is thrilled and willing to take my son for a couple of hours here and there to help me get some study time in while my husband is working.
(have several blogs, trying to consolidate them…)
I’m a little scared because I’ve let myself down so many times before, but I’m excited too because I know I’m not the same person I was then and that I can do this!
I wrote this for a newsletter but I wanted to make it available to everyone.
I’ll start with the good stuff, Marcus is learning his letters and has found a new cartoon he loves which teaches letters and beginning spelling. I’m quite proud of him. He’s made such huge strides this past year.
I went to the Infant and Early Childhood Conference recently and it was amazing. I learned so much information and found myself surrounded with other parents who actually understood where I was coming from. Most in attendance were educators but there were a lot of parents of special needs there too. I am definitely going again next year. Let me share with you a lot of what I learned.
I knew that Austistic children had sensory issues but what does that mean? When we think of senses we think of the five basic, sight, sound, touch, taste, smell. But there are as many as 21 sensory systems at work in our bodies. “Five other senses are commonly attributed to humans: equilibrioception (our sense of balance or vestibular sense), proprioception and kinesthesia (sensing the orientation and motion of one’s limbs and body in space), nociciption (pain), temporal sense (sense of time), and thermoception (temperature differences)” as written in the book, 1001 Great Ideas for teaching and raising Children with Autism or Asperger’s.
An excerpt from the book, Ten Things Every Child with Autism Wishes You Knew explains further, “My sensory perceptions are disordered. This means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am just trying to defend myself. Here is why an ordinary trip to the grocery store may be hell for me:
My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today’s special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder chugs. The meat cutter screeches, babies wail, carts creak, and the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!”
“Because I am visually oriented, this may be my first sense to become over stimulated. The fluorescent light is too bright; it makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing–the space seems to be constantly changing. There’s glare from windows, too many items that distract me (I may compensate with tunnel vision), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular sense, and now I can’t even tell where my body is in space.”
The key thing to remember here is that an autistic child does not process things in the same way as a typical child. You may be trying to show them something outside and they are only seeing the glass you are pointing to. You may try to show them a flashcard and they are not seeing the picture on the card, only the paper the card is made out of.
Sound overwhelm is a big one here at home. It makes rituals difficult because if there is a shout or calling out as a group, Marcus can’t handle the overwhelm. If there are a lot of people around, he becomes difficult to keep track of, he instinctively tries to go somewhere others aren’t which makes wandering such a danger. He may try to go out the front door into the road. At home if the maintenance guy is out mowing the lawn, the lawnmower sound is too much for him. He comes to me and holds onto me tight till it passes. People often say, bring Marcus, when inviting me to come over for potlucks or just visiting, but no one really realizes what that means for him. It’s not their fault, I didn’t even really understand it till this conference and I’m his mother.
It also means he needs to be monitored even further, autistic children do not feel the differences in temperature like a typical child so I have to take extra care that he doesn’t get too cold when outside in the winter season, because he won’t alert me or act cold. I have to make extra sure the water in the tub isn’t too hot, or the water in a pool isn’t ice cold. If he falls or gets hurt, I have to make extra sure there aren’t any injuries because he may not feel the pain and indicate otherwise.
I learned a lot about myself as well. I took a session on grieving, and it opened my eyes to what I was going through.
I used to have really great connections with friends and slowly they all moved very far away. Yakiri had a stroke and moved to California with her family, and then later on to Whales for school, Sammi moved back to her home town in Alaska, and Stacy and I, well we didn’t talk for several years. Somewhere in all that I stopped feeling connections with anyone, perhaps there was a subconscious fear that they would all go away, I don’t know.
When I found out the Yakiri had passed away, it really shook me up. She was alone when it happened. I hurt for her and at the same time I know she is in a better place somewhere running, dancing around a maypole, frolicking in the fields of flower (it’s something I could easily see her doing). She would have ribbons in here hair and always be smiling.
I have been so isolated that I’m looking for friends in any encounter and feeling connections that just aren’t there. I had the wife of an ex chatting with me online, not realizing who I was, and suddenly I found myself wanting to be her best friend. When she realized who I was she was still very sweet, but I think it made her question my motivation. So I backed off.
I’ve been selling Mary Kay for just over two years and while I believe in what the company does for the community and while I believe in what it can do for women, I have been questioning my place in all of it. Again I was looking for connections with the women there, and while they are all beautiful inside and out, there was no connection to be had.
I’ve been so desperately wanting to feel that connection, yet I can’t seem to allow myself to open up to those who are so willing to feel it with me; people of the coven and Wicca community, mothers of other autistic children, even members of my own family.
I feel alone and shut down, and while I’m aware of how many do care, I can’t seem to open up to them. I know there are those who are there for me and who have helped me in the past and present, and I am appreciative.. But still I am closed off. I know it hurts them and for that I’m so sorry, I’m trying.
Blessed be to all of you, and please keep my son in your healings and send positive energy my way if you can spare it.
When my son was born I visualized all the things he would accomplish. I saw the wonderful person he would become.
When he got to be around one and a half, I noticed some little things, like his obsession with the ceiling fans, how he didn’t look at me when I said his name, how he would rather line up his Legos than build with them, and I ignored it, hoping I was wrong. When he was two, I was looking through some old books and found one on toddlers and looked up Autism in the back. What I read fit my son almost perfectly. I finally had to face it, so I made an appointment with his pediatrician to find out.
His Dr told me that while Marcus had to see a behaviorist to be officially diagnosed, he was 100% certain my son had autism. I’ve since got him the official diagnosis and he’s been receiving treatment through a program called Birth to Three and he’s been making some wonderful strides.
Financially it’s been frustrating because my husband’s insurance refused to cover any therapy with out a diagnosis, and when we got it, they refused to cover it because they don’t cover Autism. Right now we are fortunate because the Birth to three program takes state medical, which he qualified for, and we were able to get sliding scale for his speech. but once he turns three, the therapy falls on the school district. While I have confidence in the programs they have in place at the school he will be attending, I worry because should he need something more, it can cost us on average $150 per therapy session and he would need something once or twice a week. Without speech, occupational or behavioral therapy, he would not improve at all. Many families are suffering because they have more severe cases and don’t have access to many programs or are put on such a long waiting list, that they don’t know what to do in the meantime. Many families can end up forclosing on homes to pay for therapy for their autistic child. We’re talking a minimum of $40,000 a year in medical bills for one child. Can you imagine the cost if you have multiple children diagnosed in one family? It brings families to their knees.
Then there is the stress of knowing you can’t take your eyes off them for a second. I have to watch my son constantly.
If he goes in his room to play, he eats the paint off his windowsill. If he’s in the living room, he’s throwing his toys at the mirrored doors on the wall. We have the kitchen chairs stored in our bedroom because he likes to climb them to get to things we’ve put up high.
We have the kitchen completly blocked off because he finds ways to climb onto the counters with the knife block, burners, and a window with only one lock on the bottom.
He knows how to open the sliding glass door so we have a baby gate wedge on the other side so it won’t open. He knows how to turn the knob of a door so we have to use the top latch as well as the deadbolt, because he can reach the deadbolt now.
If we are at a friend’s or family member’s house, we can’t relax because we are constantly chasing him to keep him from destroying their property or escaping out the door.
He sleeps erratically and my husband and I take turns getting up with him most nights. There have been some nights that he only wakes up once or twice, and others where I don’t get any sleep because he wakes up every 45 min to an hour. We are in a constant state of exhaustion and sleep deprivation.
He makes eye contact with me when he want’s my attention or is playing with me, but doesn’t do so for most other people and definitely not with other children. Thanks to his playgroup, he is finally starting to interact with other children even if it’s just to hand them a toy and walk away.
He is almost three and thanks to early intervention, is finally starting to learn words rather than his own language. He has is favorite cartoon memorized, even though he doesn’t know how to use the words outside of the script.
Another thing people don’t talk about is the reaction from other people. My family has been very supportive, but I have walked away from people I used to consider friends because they have told me that my son is not welcome to church events because he’s too much of a handful and that I should nip his tantrums in the bud. I have quit my church because of so called family friendly events that were not friendly to my family. It is painful and devastating, but here’s the good news, I can honestly say that the friends I have now after all that, are truly my friends.
Now I know this all sounds hard and trying but I can tell you that because of all this, when I see my son look me in the eye and say two words together like “more juice”, when I see him use a roller on playdough, or when I see him use a fork for the first time, I cry with joy, because he accomplished something that he couldn’t do before. These seemingly simple things, he found challenging. And if he can overcome those challenges, if he can learn even a little at a time. Then there is hope for him, there is always hope as long as there is therapy.
We are currently trying to get a bill passed, Shayan’s Law SB 5059, that will force private insurance to cover the treatment of Autism and take some of the pressure off of public schools and state run programs, which will save the taxpayers thousands of dollars. Please keep your eyes out for that and vote yes.
In the meantime remember that it’s not rare anymore and cannot be ignored. One in 110 are affected and the numbers are continually climbing. Please reach out and help the families affected with Autism.