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 22, 2014


So many thoughts, but not really able to put together a full post, so here goes my random thoughts:

1.  To Jacob's psychologist- when I brought all 3 kids with me tonight, it was because it was the easiest thing for me to do , and I thought it would be good for you to meet the other 2 boys so you would know who Jacob is talking about.  What I did not expect to hear is "he looks more workable than I expected" in regards to matthew.  As a Psychologist don't you know that you can't really tell a lot about kids with special needs just by looking at them.

What I really didn't expect was Matthew's break down at the Psychologist office because we were having pasta for dinner.  While I appreciate that you decided to talk to Matthew rather than work with Jacob, here are my thoughts:
a.  Maybe asking how old Matthew is was not really helpful- yes he is 12, but he has an IQ of 57 so he acts more like a 4 year old.  He was behaving like a 3 year old........did shaming him make him calm down?

b.  Saying that "maybe I needed you to come home to help me" once Matthew was calm was a great way to pat yourself on the back, but what I know, that you do not, because you didn't ask, is that you appeased Matthew by giving him what he wanted.  You allowed him to negotiate to have cereal for dinner rather than pasta.  However, the rule in my house is what I cook is what is for dinner.  I am not a short order cook.  I believe in family dinners.  Matthew often kicks up a fuss about what I am cooking and then wants seconds and thirds.
When he sat down for his cereal he was miserable, he wanted pasta like the rest of us.  Totally predictable!  This is why I had not offered cereal.  He will now wake up very hungry in the morning which should make the morning wonderful.........

2.  I had Matthew's IEP meeting yesterday.  What I wanted was a commitment that he would be in a class with 4 students, 1 teacher and 2 aides and not change teachers over the course of the day.  What the school wanted was 6 students, 1 teacher, and 2 aides and who knows if he will change teachers over the course of the day.
What we ended up with: 4 students, 1 teacher, and 2 aides and who knows how many teachers he will have over the course of the day.

What surprised me is that the other adults in the room can't figure out:
1.  why I am stressed that I have to wait until August to find out about how many teachers Matthew will have over the course of the day.
2.  Why Matthew NEEDS 1 adult.  He NEEDS predictability and structure.  This cannot be achieved with 1 teacher for Math, 1 for English, 1 for science etc.  You would not give a 3 year old multiple teachers, therefore Matthew should not have multiple teachers either.
3.  When I asked about other options I was looked at like I had 3 heads.....I am supposed to now just sit back and relax and wait until the decisions are made in August......really?  OK, I am going to try.......but basically, I won't know:
                                      1. what school Matthew will be attending
                                       2. how many teachers he will have
                                       3.  where his school will be located
Yep you're right....no anxiety here......none at all........oh and by the way, none for Matthew either who just really needs to know whether he is going back to his school or not.  You see, he would like to know if he needs to say goodbye to people or not.....but I guess I will just help him wait til August, that won't cause any stress.

3.  I thought Matthew's IQ was 62, that was the last number I had.  In reality, it is 57.  Average is 100. It is beyond impossible to balance that he speaks so well, but processes so little.  His presentation does not match the reality that is Matthew's delays.  I have got to wrap my head around this, and alter my expectations.  Not that I will lower my expectations, because I expect him to always rise to be his best, BUT, often I think he can do things he can't and I have got to come to terms with his limitations in order to set him up for success.

4.  The teacher says he is testing at a 5th grade math level.   The other day we were buying milk for $3 and ketchup for  $0.89 .  When asked how much milk and ketchup would cost together he could not figure it out.  I asked the teacher how he is testing at a 5th grade math level.  her answer......the questions on the test were multiple choice, he is a good guesser.

Thank you for that information.......that is basically worthless.  I deal in realities.....in reality I need him to understand $3 plus $0.89 is $3.89.  How about we start there?

Saturday, May 3, 2014

David and I have the baseball blues

David only wants to play baseball on a "regular team".  He sees his brothers gear up for baseball twice a week, and today he decided he has had enough.  He is desperate to play!  He doesn't want to play on a special education team.  He doesn't want to be the manager.  He only wants to play and be "one of the guys".

To look into his eyes as he asked me over and over and over again ( because when David is stressed or upset he tends to repeat his sentences) why he can't play was a total mommy low moment.  There really is no answer that I can give him that will satisfy him.

"you can't play because you can't hit the ball, and just standing at home plate isn't safe as kids pitch to you?"     "you can't play because you don't understand the rules?"  Then again, how are you ever to understand the rules, if you can't play
"you can't play because at your age the kids don't use a T and the best chance you have is using a T, but you are too old to play with the T ball league"
"you can't play because there is some stupid dumb rule that says, you can't play unless you can play independently, and you can't do that yet because you need support to be successful"

I begged the league to let David play at Jacob's level.  He would be playing as a 10 year old with 5, 6 and 7 year olds, but that is the level he is at.  I was told he is too old.

I begged the league to put David on the 9/10 team, but that I would help him hold the bat and hit the ball and run with him. I was told that is unsafe.

He has been offered a hat to wear- but he doesnt' just want the hat.....he wants to PLAY!

I have offered him the option of playing in the special education league, but he wants to play with his brothers, at their field, with them.

I hate it when there aren't any answers.  When all I can do is look at his eyes and see his tears.  He asks for so, so little.  Truly, we should all be as happy as David is most of the time....he loves the simplest things in life.  But this want I can't make come true and it has my heart hurting.

I spoke to Jacob's coach today, and he is going to let David keep track of the runs and the outs in an "official" book, and David will have a hat and a t-shirt.  And for now, this will have to be the best I can offer to David.

However, it isn't good enough.  It isn't enough to make David's tears go away, and the lump in my throat go away.

I want to see David at bat.....David wants to be at bat.....and oh how I wish I could make that happen.