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!

Tuesday, May 22, 2012

Pity party table of 1

I know that this is a post that I have to write so that I can begin to deal with reality.  I am hoping that by putting my emotions on paper that I can get past the grieving stage and enter the action phase.

Matthew needs to go to a different program for 6th grade- I don't want him to go.  I feel so many different emotions over this.
1.  We moved to Bethlehem for the school district- When Matthew was entering Kindergarten I didn't like the program that Niskayuna was offering Matthew so I sent him to the Hebrew Academy knowing that would only work for 1 year.  Then, as we negotiated for 1st grade for Matthew, Niskayuna wanted Matthew mainstreamed and I again felt passionately that this wasn't appropriate for him, so in February I put our house on the market.  In August, I purchased a house in Delmar, and we moved the last week of August even before my house in Niskayuna had sold because I felt passionately that Matthew needed to be in the Bethlehem school district.  In Bethlehem they had a self contained class where Matthew would be with 12 children who were similar to him. I felt that in a self contained class Matthew would have areas where he would succeed and areas where he would struggle.  I never wanted him to be the child in a mainstream class who would be the lowest functioning socially and academically and I knew if he was mainstreamed that is what would happen, so I packed up the 3 boys, and we moved to Delmar with a purpose and a plan.

2.  While it hasn't always been perfect, I have felt a connection to Glenmont school and the staff who have worked with Matthew.  They supported me when he was first hospitalized at 4 Winds, they trusted me as Matthew's mom,  they understand what it is to be Matthew's mom, and each staff member has found a piece of Matthew to love.  With Matthew being a child in the district, there is always someone with eyes and ears on Matthew- he is a child that is seen when the CSE chairs spend time in the classroom.  He has the opportunity to connect with children and then see them at the YMCA or at the town pool.

3.  He is an "Eagle", the mascot of Bethlehem Central Schools.  They sang a song tonight at his concert about Eagles, and I had tears streaming down my face.  If Matthew goes elsewhere, he won't be an Eagle, he won't actually be an anything......Who will he belong to?  I am looking at a BOCES program for Matthew that is housed in a Niskayuna school- a total ridiculous reality that could only happen in my life- move from Niskayuna, and in 6th grade my child goes physically back to Niskayuna as a BOCES student- where will he be part of a district?  Would he attend the school  halloween party in Niskayuna? the middle school programs in Delmar?  He wouldnt really fit anywhere.

4.  I feel like we are in free fall.  I think that we will land in a safe place, but the in between time is making me so anxious, and my head is spinning.  I want him to stay at Glenmont another year.  I want him to go back to 3rd grade and have these last 2 years back so that I could enjoy them and live more in the moment  while he had a class to be part of.  Should I have had more playdates?  Should he have gone to an out of district placement sooner so that in Middle school he could return back to district?

5.  I feel a little insane to even have these feelings- in December I was looking at residential programs for Matthew, in the past 4 months, he has done so much better that it seems hard to believe that a residential program was truly a reality not so long ago.  He spent from October-December living in the hospital and then at a respite program for 3 weeks because he was so unsafe at home, so looking at a school BOCES program is still a step up from where we were earlier this year, I should be thankful.  And yet, I don't feel thankful, I feel heartbroken.

I want to kick and scream and beg Bethlehem to keep us, to keep Matthew, to make it work.  I am still not sure that I can give up on this idea, but for now, I am planning to visit a BOCES class next week and I am hoping to fall in love with it and maybe if it feels right, then I can move forward more easily.  Today I am stuck with a heavy heart and again just wishing it was easier.

Sunday, May 20, 2012

update

There is so much that has been going on, I think the only thing that will make sense is to go child by child:

1.  Jacob- How a child can have so much growth and yet be such a puzzle, I will never understand.  We went to Jacob's kindergarten screening, and Jacob was petrified.  I ended up staying with him for the beginning of the screening, but the teachers really wanted to see how he would do with me in the room next door so I was eventually able to make the split from him for a few minutes. 
Jacob scored a dismal 10 out of 39 on his screening.  While some of the things that he didn't get points for, Jacob can actually do, like identifying all of his colors, many of them he truly is struggling with.  While he can jump and hop, he can't seem to do it on command.  He also is unable to draw basic shapes such as a square, triangle or rectangle, and he could not identify 4 of the 6 letters they showed him.

I was able to speak to the kindergarten teachers and she said that most of the incoming kindegarteners are scoring in the 30's, a few are scoring lower, but all in the high 20's, and so she is eager to hear what happens when Jacob has his evaluation.  I am counting the days until June 4 when Jacob will get a complete evaluation by an  educational psychologist. 

With Matthew and David, it was clear to me that there were global developmental issues, so I knew what path we would take and I could predict to some extent the services they would need.  With Jacob, I maintain that he is a very smart little boy.  There is some reason that he is unable to learn as quickly as he should be able to, and there is a reason he is struggling, but I don't believe that it is due to severe developmental issues, so I am hoping to gather information with the evaluation that will allow us to learn techniques to help Jacob gain the skills he needs.

2.  David is doing well, but is definitely struggling with seizures.  The only positive about this is that he seems to be able to tell me recently what is going on.  Tonight we were at a wedding and David froze, and I could tell by looking at him that something was wrong.  When I asked him what was wrong he told me for the first time that he didn't feel well.  I picked him up and held him for a few minutes and then we sat while I rubbed his back.  He kept telling me he wasn't feeling well, and that his head was bothering him.  He wasn't able to say much else about what was wrong, but he was able to be comforted and used words rather than behaviors to show that he was uncomfortable.
He then started telling me that he wanted to go home.  Thankfully, I convinced him to go outside for a few minutes and within 10 minutes of being outside, he returned to regular David again.  He was able to share that not feeling good was scary, and I reassured him that I was with him. 
It is a huge step to have him be able to communicate with me. 

3.  Matthew is back to being up and down.  We have had some major struggles with tantrums again recently, which is hard to return to, but he is also having some moments where he seems to be more in touch with what he feels.  He was able to tell me tonight that he is scared that he will have to go back to 4 Winds because he is scaring his brothers, and he and I were able to talk about what he needs to do to stay at home. 

I am looking for a program for him for the Fall because his teachers feel that  the middle school programs are not appropriate for him.  This is very scary, and there don't appear to be nearly enough choices.  I am feeling very up and down emotionally about all of this, and I know for Matthew this is also a nervous time.  I told him that he would not be going to the middle school, because he was talking about it all the time and I felt like he had to know that he would be going somewhere else- it seemed unfair to have him getting excited about the middle school, with me knowing he wouldnt be going there.

I am hoping that his emotions settle a little more over the next few days, but I know the end of the year for him is always a stressful time, and with him graduating from 5th grade, that is likely making this a harder year for him and therefore he is having more outbursts.

Here is to more family time, and some answers about what is going on with all 3 boys!