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!

Thursday, May 26, 2011

Jacob's evaluation

As if there wasn't enough going on in our lives right now with Matthew just recently coming home from 4 Winds, jacob had a full psychological evaluation and OT eval on Monday. Jacob will be 5 on November 1, and is eligible in NYS to go to Kindergarten. I cannot quite put my finger on why I don't think he should go, besides that fact that he would be a really young kindergartener, but I just don't feel like he is ready. In an effort to gather information and to just make sure he was on target developmentally, I asked our school district for a developmental assessment of Jacob.

He has had speech therapy for over 2 years now and is still not speaking clearly and has trouble conveying his thoughts. While I know he is very social and does well with friends, he has shown no interest in preacademic skills and struggles with basic shape drawing, and letter recognition. He has only very recently become interested in the letter J for Jacob, and still does not consistenly recognize it as the first letter of his name.

I thought for sure that the eval would not show anything, but I figured it would be a great way to just rule out any problems. Thankfully, Jacob scored an 89 cognitively, so he is on target in that aspect, but sadly he scored a 73 in fine motor skills. Essentially, 85-115 is a solid score, on most standardized tests with an average being 100, so cognitely Jacob was on the low average side, but as long as he can be described as any sort of average I am THRILLED.

However, his score of 73 in OT skills, puts him in the 3rd percentile of all children his age. This means that he performs better than only 3 percent of all children his age in fine motor skills. He does not yet have a dominant hand, he could not draw a person without a lot of prompting, and he could not cut out a line. He could not trace a line on a piece of paper, and had trouble making a cross with an example to look at.

However, he was one hell of a bead stringer- stringing a whole string full of beads, and he throws a ball like a champ! So, basically if he was in a bead stringing competition, watch out world, and as long as he only had to throw and not catch he is A-OK!

As part of the evaluation, the occupational therapist evaluated Jacob's Gross Motor skills as well- he cannot jump or hop, but he can ride a 2 wheeler! he has trouble alternating feet on the stairs, but can kick a ball.

Jacob is playing soccer with a group of other children who are all going to kindergarten. He is the only child who is having trouble separating from his mom, I know not completely unusual, but still a concern. he is struggling with dribbling the ball, again not a horrible thing, but he should be gaining skills at a similar pace to the rest of the team, and is not on par with them at this point. He is a very young little guy still. If he goes to kindergarten, many of his peers will have a full year on him age wise and therfore skillwise.

however, if he doesnt go to kindergarten, now there will be at least 2 if not 3 therapies that he will qualify for that we will need to fit into his schedule. Sure, the district is obligated to provide him with OT, PT and speech, but they are only obligated to provide these to him at the local elementary school. Is it really realistic for me to think that I, a single mom, can drive him to and from these services every week? Is there any chance that the district will take pity on me and just provide the services to him at Nursery School? is there any chance in the world that eh will have a major growth spurt and suddenly gain these skills at an alarming rate?

Once again more questions.....few answers.....and sadly child number 3 with a need for additional support.

Wednesday, May 11, 2011

I will trust my gut. I am the mom to 3 amazing boys and my gut instincts are strong

Matthew has been wetting his bed for 5 LONG months. For 5 long months I have told his Psychiatrist there is a problem. SOmething is wrong with my son. For 5 long months she said, he is fine. Do not worry. This week he stopped taking his lithium. Within 5 days, the bed wetting stopped. We lived 5 horrendous months because I didnt insist that he be taken off of Lithium.

I will not make that mistake again.

Matthew was crying and crying and crying at 4 Winds. They had taken him off of Zoloft and he was having withdrawal. They said he missed his mommy. I said, something is very, very wrong. I knew something was wrong on Friday. On the following Monday the doctors decided something was wrong. By then, he could not walk. He could not hold a pencil. His body was atoxic and things were very wrong. I should have insisted that they restart the zoloft and take him off of the Depakote. He suffered for 3 long days because I did not insist.

I will not make that mistake again.

David's behavior had changed. He was talking very, very fast. He was very, very impulsive. Something was wrong. He needed an increase in his ADHD medications. He is fine they said at school. He is fine everyone else said. I finally called the doctor to ask for an increase. David read his first book all by himself just days after the medication increased and he spent time in a typical 1st grade classroom. Without the medication increase he couldn't have done those things his teacher said. Without the increase his body was out of control. I waited too long to increase his medication. I listened to so many others while my boy was struggling.

I will not make that mistake again.

I know my boys. I love my boys. I need to learn to trust myself. I need to remember I know them more and better than anyone else on the planet. I need to trust my gut. They need me to be proactive. They need me to be a stronger mom.

I will stop listening to the world around me when my gut is telling me something is wrong.
I will trust my gut.
I will not make these mistakes again.

4 winds update

Matthew has been at 4 winds for almost 2 weeks now and it has been an intense roller coaster ride. He went into 4 winds because he was manic and was really struggling at home. My hope was that he would have a medication adjustment and be home within a week and a half or so. Instead, it is looking like he will spend 2.5 -3 weeks there total. That is a long, long time in the life of a 9 year old.

When he got to 4 Winds he was quickly taken off of his Zoloft as that can create mood instability in some children with FAS and mood disorders. He was also taken of of his Lithium after a few days because his level was toxic and he was started on Depakote instead.

By the middle of the first week he was a wreck, an absolute mess. He was crying constantly, and so, so sad. I fought to have the staff restart his Zoloft and thankfully they did that. At the same time he had a horrible reaction to the Depakote- he became atoxic and struggled to walk,and do most motor activities.

It is heartwrenching to have your 9 year old going through so much emotionally, physically and to not be able to be with him. He could not understand what was going on, he felt horrendous and was not with his mommy. He was crying continuously and was so exhausted he was constantly falling asleep.

Once the doctors determined that he was having such a horrendous reaction to the Depakote he was taken off of the Depakote, but now in a short period of time his body has been through an awful lot of medcation changes. it is one thing if you are going on different antibiotics to solve an ear infection, but he was going on and off of different mood stabilizing medications. Talk about putting the human body through intense emotional reactions!

The only thing that I can hope is that through his time at 4 Winds we now have professionals who have spent a few weeks watching matthew 24/7. They have heard his questions all day long. They have watched him interact with otehr children and staff all day long. They have tried to teach him and speak to him. They seem to have a strong understanding of his cognitive limitations. They also seem to have a strong understanding of his areas of strength and areas of weakness.

he has had his own bedroom the entire time at 4 Winds because he cannot succeed enough with the other children to have a roommate. He has had time in the support area because a staff of people who are used to workingw with children with emotional needs have determined that he needed to be in the support area, away from the group, to succeed. In other words a full time staff of adults have worked with Matthwe and have struggled.

For me that means that I cannnot shoulder this all myself. Matthew needs more than one person can offer to him. We need to surround ourself with support so that Matthew has as many opportunities for success as possible.

My house is quieter than ever before. At night I miss the noise that is Matthew. In the mornings I miss his laughter. However, I don't miss the stress and intensity that Matthew can add to our house. My hope is that over these fwe weeks the other boys andI have created routines, and structures that will allow Matthew to come back home and have success.

I know that when matthew comes home we will need time to be together the 4 of us. Time to snuggle on the couch, to simply be together. We will need to rebuild our family unit. We need to reconnect. We are a family of 4...David and Jacob are very aware that one of us is missing......we are ready for our Matthew to come home.