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!

Wednesday, July 13, 2011

all I want is accurate, honest communication from school

When I am at work I try really hard to focus on work. I know that my boys are typically safe, and that what happens at school needs to be dealt with at school. I am not as successful at compartmentalizing life as I would like to be, but then again, these are after all MY boys, and so like all good parents, I worry about them.

Summer school just started, a measly week and 1 day ago, and yet it seems like there is more confusion and messed up communication then I have ever dealt with. I know, and I try to remind myself, that there are at least 3 sides to all stories, mine, theirs and our shared reality, and I also know that everyday is just a little blip in each boys life, however all that said, I need communication to be accurate and honest and reflective of reality.

matthew had a good first day of summer school, a decent second day and since then, on his teachers rating scale he has had days rated as 2 or 3. Essentially a "2" day means that there was a large outburst, a "3" day means that there was not a large outburst, but that matthew was unsettled and on edge all day. We decided together, the teacher and I, that a "4" day was a good matthew day, and a "5" was outstanding, and a day where he got a "1" would be a day I would be asked to come to school as the problem was huge.

Why is it, given this scale, that on Monday when he had an outburst that led to the entire class being removed from the room, and 3 adults helping Matthew calm down, that I was told by the Social worker on Tuesday that this week he had 2 good days? Why was it that thsi is what the social worker said, when the note, DIRECTLY FROM THE TEACHER, said that Tuesday was a "3" day?

Why was it also that today when I spoke to the director of summer school, I was told that he had a good day today, but the teacher wrote that today was a "3" and Matthew was "far more elevated here than he was during the school year."

When I asked about these differences, I was told that "Monday was a good day AFTER the outburst, so it was a good day". If in a 3 hour program, you outburst for an hour, in what program is that considered a good day?

I have to deal in realities. I have to make decisions about my son, and I can only make decisions when I am given concrete facts to base my decisions on.

In similar news, the babysitter was told by the bus aide on Friday and Tuesday that David had a rough bus ride, and Matthew reported that Friday the bus was pulled over to calm David down. However, when I asked about this, I was told that he had a rough few minutes on Tuesday, but everything was find on Friday. Why was the bus pulled over? is David having seizures on the bus? Is he worried, what is upsetting him? David cannot communicate enough when he is upset to tell someone what is wrong. He uses behaviors to ensure that an adult helps him and supports him. Once you calm down the behavior, with help David can tell you what is wrong. As David's mom I am worried if he is struggling on the bus. I have to know what is going on so I can fix it. However, if I can't find out what happened, I can't talk to David and we can't problem solve for a solution.

I know this is only a 6 week program. I know that this program won't make or break anything for either of my boys, but I do need to know what is going on, and if they are ok, so that I can make appropriate decisions and without facts I can't do that.

Saturday, July 9, 2011

in need of everyone's help

As an educator, I often do workshops and trainings for other teachers. Since becoming a mom of 2 children with special needs, a majority of my trainings now focus on including children with special needs in child care settings, and creating successful opportunities for children with special needs. I find these workshops to be very rewarding, and if they make a difference for even one child, then it is totally worth it!

Way back before children, I was asked to do a workshop titled, Working with children with challenging behaviors. Back then, I could not even have dreamed of some of the challenges I would be faced with as a mom, but I did a lot of research to prepare for the workshop, and over the years I have presented this workshop at least 20 times.

As I prepared for this workshop, one of the things I read has always stayed with me. I couldnt tell you the source anymore, but I can visualize the page, and think of the text often. What was written was the following:

"For a child with challenging behaviors, if their behavior allows them, even just once, to get away with something, or allows them to avoid doing something they are asked, then they will continue with the negative behavior with the hope that it will again get them what they want."

This is probably the most true statement I have ever read in regards to Matthew. If getting loud and out of control will help him to get what he wants, he will get loud and out of control. If he sees anyone who will help him to get what he wants, he will seek out attention from that person as a way to get his need met.

Please, don't misunderstand. I do not think that Matthew is coniving on purpose, but I do believe that often for Matthew his need to get what he wants, outweighs his need to do what is right. He has a nack for reading people, and quickly can work any crowd.

If I have said no more food, he will find someone who will give him food.
If I have said it is time to go, he will find a way to strike up a conversation with someone so he can stay a little longer.

For every person who "helps" by giving matthew what he wants so as to avoid a tantrum, it is just one more time that I have work that much harder to prove to Matthew that what I say is the rule.

For Matthew to learn anything, it truly has to be taught at least 100 times. However, if I have stuck to a rule 99 times, and just 1 time matthew finds a way around the rule, or is offered a bribe for better behavior, I essentially have to start with that rule again, and do it another 100 times.

Like everyone else, I would love to avoid Matthew's tantrums. Like everyone else, I would love to give Matthew all the treats and treasures of childhood. However, in my hopes to help Matthew understand rules, to be healthy and to gain the skills he will need as he grows older, I have to prioritize and handle the tantrums now, with the hope that they will become less as he gets older because he will have learned to respect the boundaries that are set.

Please remember, as a child with special needs, Matthew does not learn the rules of interacting with people like other children do. While it is funny that at the age of 10 Matthew goes up to strangers and asks for a taste of their ice cream, at the age of 20, it will not be cute, it will not be funny, and I may not be there to help him understand why this is inappropriate!

It takes a village to raise any child, it takes a village especially to raise a child with special needs!