Midnight March

Stomp, stomp, stomp.

The house is quiet, and we are all in bed, trying to sleep.

All except one of us.

The nervous system is working overtime, and the movement is necessary to find comfort and calmness.

Stomp, stomp, stomp.

“He is easy. He is so intelligent. He is so articulate. He does not look like he has autism (my personal favorite). He is verbal; he will be able to do what everyone else does.”

While I agree with almost all of the above, except the outlandish one, there is no easy autism.

It isn’t every night, but it happens. His brain will not allow his body to rest. When he was young and had to go to school and conform to their unreasonable and often impossible requests, we would work to calm him and get him to sleep. We also had to be mindful of his siblings because they required a restful sleep.

But now that he is an adult, I often let him work it out on his own because I know he is safe. Other families do not have that luxury; their loved ones on the spectrum cannot be left to walk it out or utilize other methods to calm themselves without hurting themselves or breaking items in the home. But he just needs “a minute”.

Stomp, stomp, stomp.

An adult unable to feel their feet hitting the floor can make a noise loud enough to rival the 4th of July fireworks. At times, his sister will remind him that she has class or work early in the morning. He has a soft spot for her and is awakened to reality. Normally, he can find something quieter to do. For her. His favorite person.

Stomp, stomp, stomp.

The midnight march beats its final steps of this night.

One Month Only

I used to get into the rah rah rah “Autism Awareness month. Now it is Autism Acceptance, but it is still Wednesday in my house.

Our son is 30 years old. He has a diagnosis of Autism Spectrum Disorder. He is intelligent, handsome, and very talented. He can sing any song at perfect pitch. He can recite Shakespeare beautifully using an English accent. Yet, no one is banging down our doors to have him participate in Shakespearean theater or perform live on their stage, gracing the world with his melodious voice. He is, at the end of the day, a 6’5″ disabled man, and the world still has not grown in acceptance enough to open its arms to his uniqueness.

He most certainly can perform in groups designed for those with special needs. Of course, the kindest hearts, most accepting people reside in the world of “Different not less” which has been our slogan for quite some time..

Am I bitter? Sometimes. My son was diagnosed at a time when ASD was not as common. Therefore, the multitude of services and acceptance we find today did not exist. Thanks to myself and the warrior parents that I walk this path with, hard work, perseverance, and advocacy created the opportunities that one receiving the diagnosis now is fortunate enough to see. I, and countless others, sacrificed our careers, financial securities, and emotional well-being to put our children first in a world that was unforgiving and far from welcoming.

Just a simple flap of the arms was enough to send some folks running far from our “weird kids”. In those days, it was almost shameful to have an openly autistic child, yet today some folks act as though it is a status symbol. My son is 30, those years when we were stared at are not so long ago.

It is neither shameful nor a status symbol. Our kids, our adults, are human beings deserving of the same rights, love, acceptance, and future that is available to every other human being.

One month. April. And throughout that month, they are recognized and cared about. Just one month out of 12, they are welcome in this world.

It is unacceptable, and this is why I am not a fan of this or, in fact, any of the “months”. Acceptance and proper treatment for all needs to be available for all 12 months, 24 hours a day, 7 days a week.

We need more employment opportunities. We need proper adult housing solutions; we need the cities, the states, and the federal government to provide more aid and to NEVER even consider cutting the budget for their support and services. We need our loved ones and THEIR loved ones, we parents, their siblings, and those who care for them, to be respected, invited, and welcomed. We have essentially created our own world, yet we somehow still pay for and work in the world we are not enveloped in, as others are. Changing this would prove true acceptance.

And that takes more than 30 days.

Now, I will indeed celebrate my son and his friends, many of whom have jobs, have completed high school, college, and volunteer to help others. Most give far more to their communities than those who are not on the spectrum. I will applaud their successes and pray for their futures.

Although these years have been far from easy, they have come with amazing blessings. There are no friends truer than the friends one makes among the community that supports their disabled children/adults. I am filled with gratitude that I get to walk amongst these warriors.

I will continue to advocate and pursue acceptance for those in our community. For they are destined to leave in an indelible mark upon our lives and this world.

Autism Acceptance Month, or more commonly known in our house-“Every Month”.

Overwhelmed…almost all of the time.

One of the obstacles of being a person with ADD is that you feel overwhelmed almost every minute of every day. The stimulation of everyday life is simply a huge spiral of thoughts, decisions and tasks waiting to be completed.

I spent many years in my car. Literally, in my car. I would take the kids to school, and they were always in three different schools. Even though my oldest and youngest attended two of the same schools, their age difference never had them in those buildings at the same time.

My oldest son has a diagnosis of Autism Spectrum Disorder. Therefore, his day, and my day began with routines that would help him begin the school day on the “right foot” to insure that he would not have any meltdowns, or if nothing else, he would get into the building without getting upset. Each one of my children had some sort of need each morning. I tried desperately to have everything ready the night before, but of course with kids, that is almost impossible. As much as I tried to avoid chaos, we had those days when they were eating in the car as I drove, and sometimes completing homework they had forgotten to tell me about or I was signing permission slips at traffic lights.

That hectic ride would end and I would head off to work. In the beginning when they were younger, I worked full time, but, luckily, I was able to change that to part time for several years. This gave me some down time to go for a long walk, to collect myself, to refocus, as the running from place to place was very draining on me both physically and emotionally.

After school we would stay in our car as I drove my oldest to physical therapy, occupational therapy and speech therapy. As time wore on, I was able to make changes to these routines, but not before we added the younger kids activities of : soccer, basketball, baseball (briefly), scouts, religion classes music and theater. My oldest became part of an agency that offered social classes for young people with autism, so my time in the car grew longer. At times, I would pack dinners and feed them in the car. There simply was no time and living on fast food was unhealthy and not in our budget.

When they were a little older and I did not have to stay with them at activities, I would try to go home in between, but often that was more trouble than it was worth. I put more mileage on my car driving locally than my husband did driving his car to another state to work each day.

The year that my middle child was graduating high school and my youngest was graduating eighth grade saw our family so busy, that we honestly felt like our heads were spinning. I kept lists because otherwise I would not have remembered to do anything I needed to do. My time at work became my respite because I really enjoyed it and it was something for me, not for anyone else. There was no time or money for manicures, or the gym. My “me” time was a walk on the boardwalk, which I did as often as I could.

During this time of running from place to place, my house began to suffer. I was so filled with what I had to do outside of the home, that I ran from room to room, getting distracted and leaving tasks half finished everywhere. It was not until my youngest went on to high school that I would learn what was happening with me. When she was diagnosed with ADD and anxiety, I was as well. I asked the doctor if I could take the tests too. As I listened to what was going on with her, I heard my life being described. My childhood, my adolescence, and now, adulthood.

We continued to run around until the pandemic this past year shut us down. For me, it was welcome relief. My brain started to rewire itself. I had and still have all of the anxiety that many others have through this worldwide ordeal, but I have worked to look inside my mind and take some time to breathe.

When too much is thrown at me at once. I stop. I step aside and try to make a mental and sometimes physical list of what needs to get accomplished first, then next. Whenever I get distracted, I force myself to be mindful and return to the original task. I say no when I feel overwhelmed by someone else’s request. I no longer offer explanations. I simply say, no, I’m sorry, I cannot do that. I do not allow myself to feel guilty.

I know my limitations. I do not let myself feel bad about them. I feel overwhelmed almost everyday. But I work through it the best that I can.

“At the end of the day, remind yourself that you did the best you could today, and that is good enough.”
― Lori Deschene