Editorial Note:
Here we are one year later, (April 2016), and Blue is no longer taking any psychotropic medications. He is now balancing his anxiety and sleep by taking vitamins, Omega-3's and natural supplements. Since coming off of the last medication, he has also lost 40 pounds! He no longer has a ravenous appetite. He is also working with a therapist and a group of mentors on strategies to deal with anger.
We have also been able to reduce the number of medications for Red. Proper balanced diet, including, protein, vegetables, fruit, minimal carbohydrates, and exercise have become and essential part of his life. He has lost 100 pounds.
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When it comes to psychotropic medications, most autism parents have ambivalent feelings...
We hate that our children need it.
We're glad that they have it.
We despise the trial and error.
We love when it works.
We lament over the side effects.
Sometimes, we want to hurt the doctors.
Other times, we want to kiss them. (This is rare.)
I should clarify that medication does not treat autism or make it go away. It can help with some of the co-morbid conditions such as ADHD (lack of focus, always moving) ), anxiety, depression/mood disorders, OCD -obsessive compulsive disorder, extreme difficulty sleeping. Many children with autism just can not turn those brains off at bedtime. The same goes for many worried autism parents.
In the past few days, I have been reminded how important medication is for both or my boys.
I wrote a post, "Turning Blue" a couple of days ago about how well Blue is doing. There are a number of factors that are in play, one of which is a medication that works along with several vitamin supplements.
I immediately made him take his medication and literally pushed him out the door to go eat and get away from us. He wasn't finished with me yet. He got down the street and called me from his cell phone,
"Look! You better f-ing listen to me!"
Um...click! I don't think so kid. Of course, after I hung up, I prayed that he had already made it across the busy street and wasn't out there going berserk.
By the time he got home, he gave me a hug and a sincere apology. I told him that from now on he will eat something first thing so that he can take his meds. Crackers, a piece of toast ...whatever!
Think he doesn't need his meds? It's all a part of helping him keep it together.
Yes, he has made a lot of progress over the past year, but that doesn't mean that we are beyond all challenges.
Yesterday, I picked Red up from work. He works with young children who usually leave him feeling relatively happy. As he walked towards the car, the look on his face made me think he had just been fired or something. He looked angry, sad and mad all at the same time. I felt sorry if the kids had to see that face.
When I asked him what was wrong, he said, "Nothing." That within itself was strange. He never passes up on an opportunity to complain.
I pushed.
As he began speaking, tears started to fall.
"I don't know what's wrong with me. I've always felt like I was a messed up person. I'm broken inside. I'm scared. I'm afraid that I can't make it in life. You're just trying to kick me out and make my life as hard as possible. Dad doesn't love me. No one cares about me. Sometimes, I even think God has forgotten all about me."
It's been ages since I've seen tears from him. Even as they were falling softly, he said, "Men don't cry, I'm usually more angry." He didn't understand why he was feeling the way that he was.
My heart ached.
This morning I read an article, "Why High Functioning Autism Is So Challenging" . It described Red to a tee.
"...people with high functioning autism are, in general, very aware of their own difficulties and extremely sensitive to others' negative reactions."
"Anxiety, depression, and other mood disorders are more common among people with high functioning autism... We don't know whether the autism causes the mood disorders, or whether the disorders are the result of social rejection and frustration..."
Red being less angry and more vulnerable allowed me to see how he's been feeling for months. His feelings have been showing up as anger and negative behaviors, lack of forward movement (fear), buying things to make himself feel better (self-medication), attempts to show me that he is not ready to grow up and be responsible (more fear). He is deathly afraid of the changes that he is facing (anxiety). The possibility of moving out will be a major change. Starting some post secondary education (fear of failure) most likely feels incapacitating.
Yet, he goes to therapy week after week and talks about how he needs more equipment for his video business, instead of the things that need to be addressed.
In the back of my mind, for the longest time, I thought this particular medication wasn't doing much for him. He's still so all over the map with behavior. Apparently, it has been helping him sleep, and it does augment his ADHD medication (Focalin).
I found out he had been waking up in the middle of the night two nights in a row with a headache.
Yeah. So there goes my mother of the year award. Letting him run out of medication. Parenting fail!
The bottom line is that we both were reminded the importance of his medications ...taking all of them and taking them promptly, every day.
I think I will always have a love/hate relationship with psychotropic medications. Unfortunately, for us, they are a necessary evil.
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Adelaide Dupont · 273 weeks ago
And for those of us who knew and appreciated these points in high school to a greater or lesser extent - always good to have a refresher and feel them through the current and future generations who we survived to be able to see.
I especially appreciated points 5, 7 and 10.
And young women not settling or settling down yet is a good thing.
"It's never too late to live our dreams" - but it may be too early for some of them!
And 8 of course.
nicole · 232 weeks ago
Risa · 219 weeks ago
LAH · 210 weeks ago
Maira L. Coral · 205 weeks ago
I was looking for information for my Multi-Genre Disability Research Project from my Early Childhood Special Education class on the web, when suddenly I came across your blog. I started reading this out of curiosity and I want to tell you that as you said yourself, you will not be Amanda Gorman, but you managed to make me shed some tears, perhaps because I felt totally identified with your words, especially in the part that you speak of your son. My son also has Asperger's syndrome, he is 19 years old and he is in the second semester of College. Also like yours, he takes classes from home, likewise my eldest daughter is also taking college classes from her room. At the same time, that I work as a preschool teacher from my kitchen through a computer, my husband sleeps in the room during the day because he works at night. Also in the afternoons I myself take virtual school classes. I am a 51-year-old Latin woman who began to learn the English language as adult, so maybe you find some deficiencies in my writing, however, I was very moved by how proud you express yourself about your son. Referent your mother, I liked the humorous tone that you give when your talk about her, so I did not want to miss this opportunity and stopped my assignments for a moment to let you know that your words do make a difference, since they reach the heart of at least those who have opportunity to read you. I want confess you that is the most long I have written to someone I don't know, because your words inspired me, thank you...
Gavin Bollard · 197 weeks ago
Thanks for this post. I've been very distracted of late and so this was how I found out about our friend Kate. Kate's struggles were very real but they were so constant and so wide-ranging that it was difficult for people around her to address them. I think it's going to take a while longer for me to process all this.
I learned so much from Kate because she was always quick to point out the many injustices in the world. In her glory days, she was very much a crusader and she cared for everyone. Over the years, as her situation took its toll, I came to realise that it was the fact that she couldn't be put in a single specific category, that made the system fail her. She needed help that they weren't set up to provide.
She needed more care and she needed to be less alone. I'm so sorry that this has happened.
For a long while we were corresponding almost every day but a couple of months ago, I realised that she had become so stressed that nearly every interaction I had with her was starting to trigger her. I backed away to give her a bit more space. She only had a little time that she could stand to be online and there were too many things that she wanted to do in that time. I thought that by taking a step back, she could reach out to more people who might be geographically closer and able to assist.
Kate was a beautiful soul and she will be sorely missed by all of us.
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Spoil your cat · 110 weeks ago
Many of these living arrangement aren't good, and many of the people who run those places really don't have the residents' best interest at heart. Those places are like old age homes and foster homes, where you sometimes hear horror stories. They're hard to trust. But then there are good ones, of course.
The best thing for an autistic adult is either to go on living at home or working and renting an apartment and living independently, but that isn't always an option.
Duncan · 100 weeks ago