About Me

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!

Friday, June 4, 2010

A Matthew Tune Up

This has been a hard, hard week. If your child is in the regular hospital, you get to go and stay with them, and be with them throughout their entire stay. You are there to comfort them, to monitor what is going on, and to learn from the doctors what the game plan is.

It has been a week now that Matthew has been in the Psychiatric hospital, and I have seen him for about an hour each day. It has been a week of soul searching, learning, and making important decisions. Yesterday and today there is a marked change in Matthew- he is more comfortable in his own skin again. He appears to be a little more at peace with life. He is laughing, and a little more focused. However he says clearly that he is not ready to come home yet.

The hospital environment is allowing him to be somewhere where the expectations are never changing. The rules are the same day to day and routine is constant. Even more than at school, the hospital has a strict routine that never varies. For Matthew this is the ultimate in comfort. This is also not something that can be duplicated by most.

Outside time is from 3-5. Dinner is at 5 pm every single night. Then you bathe or shower, get in pajamas have some free time, and a movie goes on until it is time for snack and then bed. School is only for a few hours during the day, and the remainder of the time is in group therapy or individual therapy or group activities.

I think being in the hospital has provided Matthew an opportunity for some quiet, a break from all of the noise and stress that he lives with in his head. I think the strict routine has provided him the opportunity to slow down a little.

This blog is about me being honest and open and hopefully at some point our story making this an easier road for someone else to travel down. In being painfully honest I have to confront the reality that this has been a great week for us at home. The stress is gone. The house is quiet. Life is easy. We are happy. We are safe and David, Jacob and I also have a predictable rhythm to our days. There are no upsets, tantrums or outbursts to contend with.

Ths is not to say that the boys and I do not miss Matthew- David and Jacob mention him constantly and one night Jacob slept in Matthew's bed because he missed him. However, today in therapy with Matthew I was reminded after being with him for 30 minutes of the intensity that comes along with Matthew- he is larger than life. He is fast paced, and his brain races from thought to thought. His energy is awkward, makes me uneasy and is hard to tolerate. He does not view the world like others. He is at times giddy and excited about odd things, and alternately sad and quick to anger when you least expect it. He is the definition of unpredictable. This is hard to live with. This is hard to balance.

I have the weekend to prepare for Matthew to come home. I don't know what that means, and I am not sure what to do, but I do know I need to emotionally and physically prepare for matthew to come back. I need to make the house physically safe for matthew. I need to think about what he will be obsessing about that might be unsafe and make sure it is away. i need to make decisions about how I can keep him from accessing food at all hours of the day and night, and plan for how to set up the kitchen. He had hidden unsafe things in his room that I have now found, and I need to make sure that all of the unsafe objects are out of his reach.

I also need to mentally prepare for Matthew. he and I need to find a way to have more positive encounters. I am putting a new behavior plan in place for our house that focusses on positives. The goal is for him to earn smiley faces and little prizes and also to earn special time with me.

It is hard as a mom to recognize that life is easier when your child is not at home. For parents of kids with fetal alcohol syndrome, this is usually the case. These are challenging children to raise. Their brains have so many problems. Behaviorally, emotionally, socially these children need a lot of support- constant, constant support. I have 3 more days most likely to really prepare for Matthew to come home. I am counting the minutes until he comes home and my family is complete under one roof again, but I am also counting the minutes until he comes home because I know life will change again. All I can do is try my best to minimize the changes for Jacob and David and I and to recognize that all of us need a tune up every once in a while.

I know that this time in the hospital has been a great tune up for Matthew. So much of what has happened at home over the past year was because his medications were not controlling his emotional needs. However, even with optimal medications, Matthew is a child with brain damage due to alcohol use by his mom while she was pregnant. This damage is irreparable, and will have life long impacts for Matthew. Such a preventable tragedy.....I am so very glad he is mine and that I ahve the honor of making him the very best person he can be! I am learning so much about myself, our friends and our community as we travel this path to help Matthew.

1 comment:

  1. Thanks for sharing this Amie. I've been wondering how Matthew was doing all this week. I'm glad to hear that he's been doing well there. Of course it's been easier for you at home with one less child to care for especially one with special needs (no matter how much you love him!). That's totally understandable and nothing to feel guilty about. Is there any way they can refer him with a therapist who can work with him at home or someone who can provide you with respite care? Looking forward to spending some time with you guys once school lets out.