I spent a good portion of last night rereading my own blog. It is amazing to read that what was such a big deal only 3 short years ago, would now be a life I would so quickly welcome back.
Three years ago I was upset that Matthew's IEP stated that he was struggling with friendships in his classroom. Now I would welcome the opportunity for someone to tell me he had friendships to struggle with.
Three years ago, I was begging for help as he was starting to be "aggressive". Now I would happily go back to that level of aggression, and we would work through it. I could totally handle him yelling and screaming and name calling if it would stop at that.
Three years ago he had an amazing teacher and a fabulous team. They supported me as he went through his first hospitalization in a psychiatric hospital. They helped me realize that he needed more help than I could offer him at home or that our outpatient psychiatrist could offer him. As he was hospitalized that first time I had hope that there was help, and I had hope that a hospitalization was the answer.
Now I know that hospitalizations are not really the answer. They are a respite, they are an opportunity for a medication change, they are a break, but in reality there are only so many medications and it is highly unlikely that Matthew's brain, due to his brain damage from the in utero alcohol, will respond to any medication.
Three years ago I had hope that these little blips on the radar would affect Matthew and me. I had no understanding of the reality of how these incidents would affect his brothers, how they would affect my entire family or how they would affect those who love us.
When I started this blog, it was a way for me to write what I couldn't talk about. It is still a way for me to express myself, but it has to be something bigger than that. It has to be a way for us to access change. I am reading about more and more families with children like Matthew. What I am struggling with is that my other 2 children, who also have special needs, are never judged based on their needs. No one judges David because he is often unable to express himself. No one judges David when his brain is malfunctioning and he is having seizures.
The world at large encourages me to seek help. The world at large feels sadness for a child affected by a disability in David's brain. I often feel lucky that I am not "judged" by Matthew's behavior. As I am reading more and more blogs, I realize that we are a very lucky family. So many family's are treated horribly when they have children with mental illness. People assume it is due to poor discipline. They assume it is due to a lack of instruction from parents to the child about how the child should act.
I challenge anyone who has a thought about how to better parent a child with mental illness to parent one for a month. You will see that time outs don't work. That you are walking on egg shells, never quite sure when the bomb will explode. You will see that what works one day to redirect the child will not work the next.
You will see that you are exhausted. You will see that there is little help. You will see that you are powerless, and worse than that, your child is powerless in their illness. I challenge you to stop judging and start helping.
I am always thankful and will always be thankful that in our moments of stress there are moments of hysterical. Yesterday I was woken up to Matthew telling me he had used my razor to shave in the shower. I panicked as to what he could have possibly shaved. He came out to me and he still had a full head of hair. He bragged with pride that he had shaved his entire body....yes, you read that right, I said his entire puberty filled body! And worse, he had used MY razor!
As life gets crazy, I try to remember that there is always time for laughter! The reality that he shaved his private area has had me laughing for 24 hours, and hopefully will take me through the next challenge.
He has started a new school, and so far I am thrilled with the communication from his teacher. I need people to be open and honest with me. She has been very truthful in her communication to me. She is not pretending that things are perfect, I completely appreciate that as it matches my reality. She is holding him accountable for his actions even as a new student. I have hope that this school will work and he seems happy. I am sad that he is in a class with 4 students and 5 adults, but if this provides him with success, then life for all of us will be easier!
- I am a single mom of three amazing boys! All three of my sons entered my family through adoption. All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!