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!

Saturday, July 30, 2011

matthew update

Matthew has been in 4 winds again for the last 2.5 weeks, and there has been a lot of learning on my part, information gathering, and a need to face the realities of life no matther how harsh they may be.

I am thankful for a very strong, encouraging team at 4 Winds who, while at times it has been challenging, have helped me to understand the reality that goes along with parenting a child like matthew. Essentially, matthew is a child with brain damage-it is unclear how much damage was done, but the alcohol use while he was in utero has caused clear brain damage mostly to his frontal lobe, otherwise known as the area of the brain that is in charge of making important decisions. The frontal lobe controls all of your executive funtions- essentially Matthew now needs someone to be his frontal lobe to help him make smart decisions, to keep him safe, to supervise him at all times, as he is unable to do these things on his own.

In addition to the fetal alcohol syndrome, Matthew is also struggling with mental illness, most likely bipolar disorder. His moods change constantly- he can go from happy as can be, to a state of anger that is intense. He can go from motivated, to totally lethargic in less than 20 minutes.

At the hospital they have 20 staff with 15 children, in addition to social workers, psychiatrists and nurses. They have quiet spaces that children can go to if a break is needed. They have people who can help children 1:1 or even sometimes 3 adults for 1 child if that kind of support is needed- Matthew has needed this support multiple times in the hospital.

Many people in my world thought I was nuts to adopt 1 child on my own. Most people in my world really thought I was crazy when I adopted 2 children, then when those 2 children had identified special needs requiring intense services and I went ahead and adopted child number 3, anyone who thought I was sane, jumped on the "she's crazy" bandwagon. It is because I am strong willed, and a little crazy that I went after forming the family of my dreams even without a partner. It is because I knew what I wanted, and was bound to make my dream come true, with or without the support of another adult, that at times has led to some of my current struggles.

i am not great about asking for help. I like to believe I can do it all myself, and if I can't do it all myself I spend hours and days believing I am a failure. I am working hard to realize that I can't do this all myself. As a gift to my son, I have to realize that we need help. He needs help, and it is more help than I alone can provide.

Every 2 or 3 days in the hospital, Matthew has needed not only intense adult support but also medical intervention to bring him down and to stop his rages. Given this, the hospital is concerned that we need support at home. There is only so long that Matthew can be in the hospital, and that time is coming to an end. Sadly, brain damage cannot be repaired by medication, it cannot be repaired by behavior modification, and it cannot be repaired by any other methods that are treatable in a hospital setting. As a double whammy, many children with fetal alcohol syndrome also do not respond well to medication- Matthew, fits into this category and has had reactions to most of the medications that have been tried.

So now it is time for me to plan for my son to return home. I am putting alot of energy into making his return home as successful as possible. There will be posters in our house that remind matthew of the rules, we will try to live our lives more focused on routine and structure so that Matthew is as happy and comfortable as possible. In addition, I need a group of people who I can lean on. I need to ask for help, and that is the hardest thing for me to do.

I need help when Matthew is upset. Even when Matthew is calm,it is suggested that we have help in our house as many evenings as possible so that there is an extra adult to support and help Matthew through the rough spots that come with life.

I need people who can play catch with matthew, focus just on Matthew and spend time helping Matthew's life be a little more calm, so that the things that I have to do in life, such as grocery shopping, going to the store, and taking the other 2 boys on playdates, do not overwhelm matthew. I need essentialy to form "team Matthew". A group of people who can help me to create a life that helps Matthew function the best he can, that limits his outbursts, and focuses on helping him to succeed. I need to be the cheerleader and organizer for team Matthew. To focus on meeting him where he is in life, and keeping life calmer so that he does not escalate rather than plannig for how to deescalate him once he becomes upest.

I have 4 more days to figure out how to change our family and our lives so that we are ready for Matthew when he comes home. If you know of any child care providers, or education students who may want to join "TEAM matthew" please pass along their names.

I have worked hard in these 2 weeks to accept that family life may now have to include other people, it is not what I want, but I will always do what my son needs. here is to hoping and praying that Team Matthew buys us some days of peace and happiness! Here is to hoping that Matthew comes home as calm as possible!

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