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!

Wednesday, April 24, 2013

silence....please I need silence

From the minute I walk in the door all I hear is noise......I can't get out of my car and into the house to put my keys down without being accosted by noise.  An interesting fact or a question here or there, of course I am happy to listen to.  Non stop noise........non stop......read those two words.....take in those 2 words......non stop!

I am a parent who waited with baited breath until Matthew was 2, David was over 2 and Jacob was 23 months to hear my boys first words.  I understand the burning desire to hear your child.  I cried the tears of a parent who didnt know what their child wanted.  That said, I would give anything now to have a night of peace and quiet.

Matthew believes that whatever he thinks you have to know.......did you see that car it was blue, oh no, there goes a bus, I like that bus, do you like busses that is the bus I rode on wolf road.  today I said I didnt want to go to garden club anymore.  do you know the stone temple pilots? is michael jackson dead?  do you want to hear about my day?  today I got all green.  what's for dinner?  can we have ice cream.  I had a good day.  can we celebrate? how about going out for ice cream.  I read a book at school today.  Did you see the bus?  It has the people on it.....oh gross that person is smoking.  yuck, hey lady, smoking is gross.  

and on, and on and on and on....until your brain or your ears might explode.  Until you might go crazy.

On top of this right now David is doing his cough..... repetitive cough with a throat clear.  His teacher hears it.  I hear it, the babysitter does not hear it......to me it is a constant panic.  Is he ok?  Does something hurt him?  Is it a tic? allergies?  reflux?  What is happening? 

Add to this Jacob who wants to tell me about his day, and truly in the 2 hours between the time I get home and bedtime I feel like I have gone from being sane to being crazy.  It is all I can do to get them into bed.  And then the , "I have one last thing to say" game starts.....one last thing?  Matthew, how is there one more thing?  I am going to implode!!! I can't hear one more thing....wait, that's not true, poor David, have I heard from him at all tonight?  Has he said anything to me?  I have to know how his day was, but when I ask he doesnt always answer.....hell, who am I kidding....he can't answer....there is no room to answer!

I tried starting a new routine where Matthew could only ask a question every 10 minutes....that seems maddening though to time when a child can ask you a question....1.  because who the hell wants to time that  and 2. because in between him asking a question he is asking how much longer he has to wait or he is telling me "2 more minutes til I can say something again"

I am celebrating the fact that Matthew's behavior is good right now....really, really good.  However, that said, life is still exhausting.  It is still a lot to handle, and it is still hard to know if I am doing it right.

Monday, April 15, 2013

David is David

David has been really struggling in school recently and on the bus.  I feel like with all 3 of my kids there is always 1 that needs my attention, 1 that is on the verge of needing my attention and 1 that just got over needing my attention.

Jacob's IEP meeting was last week and I spent a little bit of time before that just getting used to the idea that he would need more help than I had hoped.  I am seeing kids who got help in preschool now moving on and not needing as much support moving forward to first grade,and I am frustrated. 

When Jacob first was evaluated, he was denied services and so  I had to go to mediation for Early Intervention to approve any speech services for him.  Since then, it has been a constant battle to get him any services, and now I feel like he is needing so much support because he didn't receive enough when he was younger....so between beating myself up for not being enough of an advocate for Jacob, and adjusting to the fact that he needs more support than I hoped, I had been pretty busy with Jacob and had not focused as much on monitoring David recently.

That is of course until Friday when David found a way to ensure that I refocused my attention on him.  I got to work and found a message from the bus garage that the Transportation supervisor had been sent out to David's bus to take David to school.  It took me almost an hour to find out what had been going on, and even now I am not 100% clear on the details, but apparently David was head butting the aide on his bus, and was throwing things.

The thing with David is that there is almost always a reason for his behavior.  The problem is, he will not tell you the reason, so you have to be one heck of a detective to figure it all out.   He will nod his head up and down or side to side to signal yes or no and so when I ask enough questions I can usually figure out what happened.  It is very, very rare for David to act up  without there being some sort of reason.  The reason can be he is hungry, he is hurt, he is scared, he is confused, someone hurt him, he doesn't know what the plan is, essentially.....it can be ANYTHING...but if you are patient and aware enough, and ask enough questions, you can usually figure it out.

However, without seeing David right after the incident, I have no idea what happened and likely will never know.  All I knew was that I got a phone call that my child had been acting up and was driven to school by the transportation supervisor.  On top of that I knew that David was doing his "cough/gagging thing" as we lovingly call it.....no one knows if it is a seizure, or a tic, or reflux, we just know that it happens every few months and he gets almost no sleep while it is occurring.  Seizure meds tend to stop the pattern, but then again, it could be that it is just stopping on its own....hard to know for sure.

So, basically, David was behaviorally a wreck, he wasn't sleeping much, and the teacher was seeing a decline in his skill set.  He was disruptive in class, and more likely to be inattentive and disruptive than usual.  Given the incidents on Friday, I called his neurologist and we went in today to see him.

I feel like sometimes I just wish I could be told "your child has a splinter, we are going to take the splinter out, you will apply a bandaid for 3 days and it will heal".  Instead, what I almost always hear is "we don't know what is wrong, we don't know how to fix it and it is trial and error."

It is trial and error with my munchkin.  It is trial and error with heavy duty medications.  It is trial and error with symptoms that ebb and flow......is the medicine making it better or is it better on its own? 

Right now as I type this I am hearing my baby cough and gag and cough and gag. When I go up to cuddle him he is clear I am bothering him as I rub his head.  I need to lay with him because hearing him breaks my heart, but I understand that he wants to be alone, because I would hate to be having my head rubbed if I was feeling yucky....It is hard to want to be the head rubber and try to accept that the head rubbee wants space.

Essentially the plan for now is to decrease one of David's seizure medications because it does not seem to be helping, and we will find out as we decrease it that either it was helping and we didn't know it, or it was doing nothing so we might as well get the medication out of his system.

No one seems to know for certain what the path is for David.  He has permanent and unchangeable brain damage due to his genetic disorder.  Brain damage makes people act differently than people without brain damage.  For Matthew 3rd grade was when we saw a decline in his skills and he seemed to fall further behind his peers.  Where before he had been able to "fake it", now his delays became more pronounced.  Is this what is happening with David?  Has he peaked at the age of 9?  Is he just going through a rough time? 

We played the game of TROUBLE tonight as a family and I had to help all 3 boys  count to 6 and move their pieces.  I love board games....I love card games.....I dreamed of playing these games with my kids, and we will play games together, but the enjoyment factor is lower as you have their delays screaming at you every time they take their turn.  For Jacob, I am sure with practice he will learn to play games, and maybe he and I will have some fun playing "war" and other games in the near future.  For Matthew and David we will play because it is part of childhood, but it is a time when their delays scream at me, and so I can only play so often.

David is one heck of a puzzle master, and he loves them, so tomorrow, we will focus on his strengths and we will put together a puzzle!  I will go check on him and give him a hug and a kiss and remind him I am here, even if he won't let me rub his head.  I will monitor him as we decrease his medicines, and will hope and pray that this cycle of challenges is almost over, and then I will focus on the next challenge that comes my way.

I know that for all parents challenges come in cycles, and each of us have struggles that our children overcome......for me my struggle is constantly accepting my boys for their strengths, which are many, and realizing that their limitations don't define them.