I’ve had interesting conversations with very different mothers over the years. Some moms were mothers of students I met while waiting to pick up my girls from grammar school. They were wonderful woman I became friends with in the school yard back in the day. We all lived in the area, had children of similar ages, and most of us were stay at home moms for whatever reason. Those moms allowed me to keep one foot in the typical child world and the other in the special needs world. They have no idea how special they were/are. I didn’t know where I fit in at the time.

Most of these friends knew I had a special needs son, few knew the struggles Tommy and I faced in having Thomas appropriately diagnosed. When we decided that Thomas needed to attend a residential school when Thomas was 8, I don’t remember talking about it with that group of friends. I didn’t think they could possibly understand. Meanwhile I felt like an imposter mother. Living life and running around with Alyssa and Lelly as if they were the only 2 children I had. I wanted to carry some sort of sign around that screamed I have a son too!

I had a whole other mom friend group who lived in my computer. Those moms kept me sane. We all met online and most of us lived similar lives in different areas of the US and Canada with our special needs child/children. We talked about our kids’ behaviors, medications, siblings, psychiatrists, teachers, IEP meetings, you name it; it was discussed. I had the distinct pleasure of meeting quite a few of these moms in person. And it was incredible.

One mom lived in Long Island, Diane. We picked a date to meet in Manhattan along with another mom who turned out to be not quite sane (little did we know). Anyway it snowed like crazy that day and we still decided to meet. Without ever seeing a picture of Diane I knew her right away! I can’t remember where we were, Grand Central maybe? We were laughing and hugging each other, so happy to meet each other in person.

A few years later a bunch of us met in Los Angeles. There was a conference for an author of a book that made him famous in our circle. Jackie, Cath and I shared a room; we had never met in person before. We talked on the phone before the trip. When we finally met it was awesome! We knew each other so well from chatting online there wasn’t any awkwardness. I’m so so glad I made the trip to California and had the pleasure of meeting such incredible friends.

My friend Jenn is my oldest friend. We met when we were 17 years old. We worked together at this popular children’s clothing store back in the day. Good times, lol! There were a few years that we lost touch, she went to work in Manhattan and I was in college. Our paths crossed when I was pregnant with Alyssa and I ran into Jenn’s mom at KFC of all places! We reconnected and even had our girls in the same years. 1998 and 2001. Jenn is the type of friend that I only hope many other people have. The one you can go months without talking and it doesn’t matter; the next time you do talk, it’s as if time hadn’t passed. You pick up where you left off. The one I can talk to and say, “ well YOU know!”

Friends like this are so important in this life. I am grateful.

I wrote a few months ago that Thomas’ medication regime was horribly disrupted. The psychiatrist whose care he was under; without my permission lowered the dose of one of his much needed medications. One that controls aggressive behavior. This physician took the word of group home staff that Thomas was “fine” and without once consulting me; his mother and legal guardian kept decreasing the dosage until my son was on the verge of being hospitalized.

When I spoke with this doctor on the phone she said, “I think you need to work with another physician.” Nice. If I or anyone else I know fucked up their job to this extent we would at the very least be fired. Not this person.

So fast forward Thomas has a new psych practitioner who listens to me; Thomas’ mother. You know the one who raised him and knows him. The one no one listened to or believed for many years. The new psych NP immediately raised the dose of the medication that was lowered to an almost non existent dose. We didn’t see an improvement immediately of course, these meds take time to work. But after increasing steadily the dose; Thomas was soon almost himself.

I blamed myself. I let my guard down and trusted other people to make judgement calls and decisions only I am qualified and experienced to make. When you have a special needs child you can’t look away for a second. No matter how old they are or where they are living. No one will advocate or care for your child the way that you do.

In our situation with Thomas living in a group home, there has to be a level of trust with the staff. His house has an open door policy. We can come and go see him as we please. We’ve made a few visits unannounced. Not to catch anyone off guard but because Thomas had asked us to bring him something.

This issue came to the forefront of my mind again this past week. I already annoyed at the powers that be where the disgraceful excuse of a doctor is employed, received a phone call. From the head of the physician who is head of the department. I verbally had it out with him. I did not curse; I did not hold back. I was dignified and verbally unleashed my anger. The previous exchange of my thoughts and anger was done via email. I know I exasperated this man. He threw in anything he could in an attempt to shift blame away from that physician. I caught on right away and called him out. Of course he denied doing so.

It has been years and years that I’ve experienced this anger. I’ve forgotten how much it takes out of you. And until the situation has been appropriately resolved there is only a thin, easily disturbed bandaid somewhat covering the fresh wound that has been exposed. There used to be a thicker scab that had grown over the would as it had healed from the early years. Scabs hurt when they are unexpectedly ripped off.