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, March 29, 2011

what a day

I am in need of a battery recharge and i am thankful that I am going away overnight in 2 weeks, I only hope that I make it until that wonderful night away. I think what I could really use is to go away one morning and come back after a full night of sleep and a full day of sleep.....maybe then I would feel completely and totally rested. Then again, are any parents truly well rested? I just feel like right now my anxiety is sky high......

David is doing the nighttime cough that means he is having seizures. He is awake a lot during the night and just doesn't "look right". His teacher has noticed a change in him, I am noticing that he is having trouble getting some words out....certainly, most people would notice nothing right now, but I know my little boy intimately, and I know when he is just not 100%. So while he is ok, he is just not completely well, and so I am worried as any good mom would be.....so in my worry about David I am functioning at not quite 100%.

Add to that worry about David, that I am thinking nonstop about what to do with Jacob next year. Should he go to kindergarten? Will he be better off to wait? Will he receive speech services if he doesn't go to kindergarten? Will he struggle and be frustrated if I send him to kindergarten and he isn't quite ready? I feel like he could use another year to mature. Unfortunately, he may not get the speech services he really needs if he stays in preschool another year, so it is hard to know what to do to make a good decision for jacob.

On top of all of this Matthew is still wetting the bed, and I am exhausted. It is constant....every single night. He wets through 2 sheets, 4 adult diapers, 2 diaper pads that are meant to keep him dry, and a chuck sheet on the bed. His new obsession is drinking and he is expending so much energy trying to access liquid however he can. i truly don't know which of us is struggling more....I can't stand to listen to the obsession and I am sure that thinking about drinking all day long cannot be good for him. Every place he goes he notices where he can get a drink, then he works to come up with a reason that I will allow him to get a drink, then he has to put on a show to prove how "thirsty" he is......he has to be exhausted.

I waited weeks to get him into a Pediatric Urologist today and I was so hopeful that he would be able to help us......want to know what he suggests.......wait for it.....it is impressive, definitely worth his years at Medical school.........

Give him adult diapers for sleeping and collect his urine over a weekend!

As I started to get hysterical in the office I reiterated how many pullups he was using. I begged the doctor for input as to what else we could use....his answer....

DEPENDS....give the boy DEPENDS.....

what does he think we have been using for months already?
Does he have any idea how hard it will be to collect urine for matthew for a full weekend? He wants me to spend one night waking him every 2 hours to take him to the bathroom.....if I thought this would all end with a solution, I would get right on top of all of it, I promise I would....but it turns out there aren't any solutions.....there is no magic cure.

I have rarely left an appointment feeling quite so defeated. I cannot do this much longer. As a single mom I am exhausted, I am cooked, I am totally and completely done. After a small, ok, not SO small, temper tantrum, I decided to turn to bribery as my last ditch effort to see if I could get matthew to help me keep him dry. (I felt like screaming "help me Help you!" )

I have offered up gum whenever he is thirsty to see if this will help, and I have offered an overnight at his grandparents when he has 3 dry nights! To sweeten the deal, I offered to buy him a bike. Truly, right now I would give him anything for a night with dry sheets! I need a vacation, I need some time away, I need some time by myself to simply sleep.

I feel like I am teetering on the edge and the edge is getting smaller and smaller and I dont know how much longer I can hang on. Once again I am at that point where something has to give. I really need a dry bed, I think I could cope with the other ups and downs of life, if we had a dry bed, or dare I dream, 2 dry nights in a row. Please help, and pray to the gods of dryness for us, and if you have any extra prayers, feel free to pray to the god of kindergarten decisions.....I need to stop being the decision maker for a little while....maybe it is time to get a new Crazy 8 ball and see if it can make some good decisions for my family!

Friday, March 25, 2011

Growth for the Bloom Boys!

Tonight was the Learning Fair at Matthew's school.......While I always like the idea of going to events at Matthew's or David's school, usually there is a reason we can't go, or, truth be told, I find a reason we can't go.

It is hard to bring 3 kids to any school event on a Friday night. It is harder to bring 2 school age kids and one preschooler to a school event on a Friday night. It is even harder as a single mom, to bring 2 school age kids and one preschooler to a school event on a Friday night.

That said, I am so glad that we went tonight. The boys have grown up a lot, and it is important that we try these different experiences so that the boys have different opportunities. These programs are also a great way for me to see just how far we have come!

I clearly remember going to the Learning Fair 2 years ago. Matthew was in 2nd grade, David was 4 and Jacob was 2. We sat through a concert and then did some fun stuff with the music teacher, but I also spent a lot of time wrestling with the boys, chasing Jacob and keeping David calm.....

Fast forward 2 years and we are doing GREAT!

Tonight we saw a teacher from Mad Science- he was a little over the top for me, but the boys did great. The lesson was on air pressure, and went WAY OVER MY HEAD, but he used a leaf blower, and created a version of a hovercraft so the boys were thrilled!

Then we went to a Kids Cooking activity....I mean really....could there have been a better class for Matthew? He walked in and fell in love....the woman leading the class had been at Glenmont on Thursday making smoothies and he LOVED her. The way to matthew's heart is through his stomach!, so to have this woman at his school 2 days in a row, it was like the god's were smiling on matthew!

The boys all did great cutting strawberries, folding cool whip and yogurt together, and creating their own little healthy snacks. I was able to meet a few of the kids that Matthew knows at school, and I had a great time chatting with a few moms at my table.

Of course, it got a little hairy when David wanted more vanilla yogurt, and jacob wanted another dessert shell. But in all honesty, the challenges were over in less than 2 minutes! I have learned to read David better, and I knew that at 7:15 at night the last place he would want to be was in an over crowded school building.

The moms who were near us were super helpful, and you could tell that they were enjoying watching David and Jacob cut the fruit and chatter together! Matthew ended up proposing to the woman leading the session, and announcing "my mom needs to know where to buy a blender so she can make me some smoothies"!

I was able to see the humor in the entire evening, to gush a little at how well my boys listened and to bribe them to leave after the first workshop instead of staying until 8:30 making sketchbooks!

It was a fabulous night....the next time a note comes home about a school event, we will go again and try to have another success....but for tonight, I am basking in the glory that my boys did great, I did great and we were just another family at the Learning Fair!


I am so excited....which truly seems like an odd emotion based on the news I received today, but excited is how I am feeling, so I am going to go with it!

We have seen the spectrum of Doctor's, everything including developmental specialists, neurologists, neuropsychologists, developmental psychologists, pediatric epileptologits, and more......and the one thing that no one has been able to determine is what is the official diagnosis for David, and what is the cause of his issues......

Today we got the beginning of an answer!
In February we went to see the geneticist at Albany Med, Dr Darius Adams. It was an appointment that I didnt really want to go to, I felt it was a waste of time, but I decided that since we had waited months for the appointment, it couldn't hurt to go. The appointment itself was pretty brief. He and I discussed David's development since birth. He examined David and ran some urine tests and blood tests. I was told it would take about 6 weeks to get any results and to call the office to check in.

After calling for about a week, I finally spoke to Katie, one of the nurses, today. Apparently a genetic duplication has been found on one of David's chromosomes. At first Katie said that this may or may not be the cause of David's issues. As she explained this mutation is a pretty variable duplication, and it has some effects on some people and on others it presents with little or no effect developmentally.

As she looked up more information however it became clear to me that this has to be the way to explain David. This duplication is known to cause seizures, autism, speech delays and motor delays.....The consistent question for 5 years now has been "does david have autism" with the answer being "it really depends on the day you see him. He certainly meets a lot of the criteria for diagnosing autism, but an autism diagnosis alone doesnt describe David completely". The other question has been "does David have seizures", with the answer being " sure as heck seems like it, but his EEG is not clear".

Essentially, knowing that there is a chromosomal issue allows me to put all of this into a little package, and gives me an answer to the question that I have struggled with. I have always felt that there had to be a way to explain all of the things David struggles with. This chromosomal error gives us that explanation.

Whether there is a way to treat it or not, and whether it will help to predict the future or not, I have an answer.....I have a path to follow, and tonight I will sleep more soundly!

As a parent I have struggled for more than 6 years. I have been to doctors I have loved and doctors I have hated! I have had people doubt what I see in David, and people say that it is time to stop looking for a diagnosis. I am the kind of person who needs an answer. I can deal with anything, but I like to know what I am dealing with.

I am looking forward to meeting with the geneticist in a few weeks to learn more about what this duplication means for David educationally, socially and for the future...