I don’t have the nightmares much anymore. At least I don’t think I do. I just don’t remember my dreams.
I remember as a child the nightmares were brutal and strange. There was a lot of falling and falling through things. There was never anyone to help. No adults to save me. It was always just me and the monsters.
The weirdest part was that the monsters didn’t always look like monsters, sometimes they were people, or even saints. They would stare at me and chase me away from any perceived source of help. That was probably the most frightening part, being isolated, even in my dreams.
Is your world as dark as mine?
Or is it of a different kind?
Birds and bees and wonderous things
Unlike the sorrow this place brings
Into my timid little breast
And that pump beating in my chest.
I’m tired. It goes clear past the bones and into the soul. I’m tired into the core of my being.
I can smile and do things but I just want to sleep forever, or at least until my soul feels revived. Sometimes I almost feel alive. Sometimes I believe I’ll be ok, but then something will happen and it’s back. I’m tired, I’m afraid, I’m small and unimportant.
I feel like I am dying. I’m so stressed my chest, head, and stomach hurt. I’m dizzy and disoriented, lying on the couch. I look at my scissors and think that stabbing myself would hurt less.
I don’t want to die. I don’t want things handed to me as if I were an invalid, either.
Maybe I need to relearn how to do things? Maybe I just do everything wrong?
Sometimes I think how wonderful it would be to start over, have the type of childhood I should have had. With security and acceptance. How would I have been? Not like I am now. Not laying on the couch doing deep breathing exercises to try to stop the pain. Not confused, dizzy, disoriented, and useless.
I don’t talk to people much.I don’t know what to talk about. It seems there’s not much that interests me much anymore, or people don’t really want to hear what I have to say. I guess mental illness is uncomfortable for people to hear about. It’s easier to hate or blame. It’s easier to pretend it’s not there if they don’t have to live with it.
I live with it. Every single day. I deal with the exhausting and strange thoughts. The constant feelings that everyone I meet wants to hurt me. The feeling that even fully clothed, I’m completely naked everywhere I go.
People are always asking my husband, why can’t I get a job and help him pay the bills? I wish it were that easy. It gets depressing to hear him explain to people that I have non-military complex posttraumatic stress disorder and have difficulty functioning on my own in public. Most times, without someone I trust, I get dizzy nauseous and often get diarrhea. The insomnia makes functioning difficult, too. My misunderstood heightened startle reflex can also be extremely problematic. People think that jumping out and frightening people like me is funny. I get it, but at the wrong time I can react badly. I’ve hit people in the past. I hate reacting violently.
Even attempting to get disability on my own is painfully difficult, Going to the doctors that I don’t know and talking to strangers on the phone. Don’t get me wrong I consciously know that they won’t hurt me but experience always whispers “what if?”.
Despite everything I’m actually fairly happy in my life. This most certainly is not some pity party. I’m surrounded by love from my husband of 13 years, our son, and Our three cats. I’m blessed in ways that “normal” people would never understand. I’ve learned to value the little things. People who actually want to spend time around me, despite my oddity, is a treasure beyond measure. Our home where we can get away from the weather, food in our bellies. It’s hard to be completely displeased with life while we have these things.
Where do I start. A friend told me it would be therapeutic for me to share my families story. So I’m going to give this a try for anyone who is in my shoes…. Almost 10 years ago I gave birth to the most handsome little boy. He has always been full of fire.” Busy 24/7. He never slept very well, always “on the go”. When it came time for him to go to school it was a challenge to say the least. He always was in trouble. Not listening, not able to focus, never could sit still. He has always had issues with blurting things out. Finally in 2nd grade I asked his pediatrician to put him on medicine for ADHD, then the long battle with medicines began. He got very sick; his stomach bothered him a lot. We changed medicines numerous times with no luck. We started doing occupational therapies to help him with self control and calming techniques to help with his temper and rage. I felt like I was drowning, failing both at work and at home. I had been at the same job for 10 years they use to be able to count on me EVERY time and over the last 4 years I wasn’t able to make it to work because my son was having a “bad” day. To anyone else, they think he is undisciplined, but to me something was wrong. I continued fighting with the school day after day about my son saying he is being picked on and beaten up. They would suspend him or just call me at work and tell me they can’t handle my son and I needed to come get him. My son got very depressed and started to hurt himself. I couldn’t believe it, my perfect baby hurting himself. School seemed to be an unsafe place for him. I tried to get his class changed but it couldn’t be done. I tried to change schools in the same district and couldn’t . The principle didn’t try and help us at all. After months of dealing with this and things getting worse I pulled him out of school. I needed to protect my son from himself and the other kids. Three weeks went by and no one had called from the school to find out where my son was until a teacher, my son didn’t even have, called and wondered where he had been. I called her back and was so angry. Why wasn’t the principle calling? I explained to her what had happened and immediately we had a meeting set up. I go into the school and lost it. At the end of that meeting my son was in a new class. And the fight to get him to go back to school began. All the time we are still going to the depression center sometime 3x a week. The school year was harder than the last and my son did not want to go at all. We discussed all of this in therapy and got through class after class and drug after drug nothing is working. I was noticing my son was starting to swear a lot and at inappropriate times. I brought it up to his therapist who tells me she has diagnosed him with Tourette syndrome. I was in shock. I found a book in the waiting room while my son was in therapy, it was what every family needs to know about Tourette syndrome. So I took it and began to read. That’s when I discovered that my son has 8 disorders that fall under the spectrum of Autism. My son has been finally diagnosed at almost 10 years old with Autism.
On Monday August 8, 2016 Jason Harris, founder of Jason’s Connection spoke with Sue Ottenberg on her radio show Everything Special Needs.
Jason spoke on the importance of Culture, Compassion, Connection and Community. Jason feels that it takes a lot of courage to ask for help of any kind. Jason’s Connection is about more than being inspirational. It is about recognizing that its okay to have challenges and struggles. “That’s part of being human for all of us! whether or not you have a disability”
Everything Special Needs Is a weekly radio show that is a complete resource for parents in the special needs community. It is held Monday nights 6-7pm on 1360am.