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!

Sunday, January 2, 2011

12 days of vacation....an intimate look at the boys 24/7

We spent the end of 2010 on an amazing trip to Disney World with my mom and then in Vero Beach with my entire extended family- all 37 of us were together!
As we headed for Disney Matthew was really struggling and my anxiety level was high. This was the first time that my mom would spend a full 12 days with us and would see the ins and outs of Matthew. David was doing well medically as we left and Jacob was your average 4year old.

As soon as we got to Florida we headed to Magic Kingdom. It was amazing to see the characters through Jacob's eyes. Given the developmental needs of Matthew and David, imagination is a skill they struggle with, so to have Jacob's eyes light up and twinkle as he rode the Buzz lightyear ride and met all of the characters was a mom moment I will not forget. He was giddy with excitement. He must have asked a million times "is it real?" You could see in his eyes that I had made his dreams come true by introducing him to Mickey, Minnie, Buzz, Woody and the gang.

We were not inside the Magic Kingdom more than 30 minutes when Matthew had his first meltdown. I have never felt so broken hearted as I watched Matthew basically go into another place emotionally.....He slammed his hand into the brick wall, he told people to leave his park, he was totally not present with us. Luckily I had brought his medication with us and within about 30 minutes he was back to our world.

We rode the race cars,the Buzz Light year ride, the Dumbo ride and went into Mickey's house. We saw the parade, watched the castle light up and basically just were all brought to life as we took in the Magical experience of Mickey World.

The next morning we got up and hurried off to Hollywood Studios. The first thing on my list was to introduce Jacob to Lightening McQueen and Mater! What a moment that was! All 3 boys were alive with excitement. To meet the real McQueen is every boys dream!

We then rode on the amazing new Toy Story Ride and spent 45 minutes waiting to meet Buzz and Woody.....to watch Jacob meet his heroes again was magic. Even David was taken with the fun of meeting Buzz Lightyear. We rode the Toy Story ride at least 3 times each time more magical than the last.

Then it was off to the Fantasmic Light show.....definitely not a show for kids prone to fear- this was most definitely the darkest disney show I have ever seen....the bad guys were fighting the good guys, and there were some fabulous special effects, but it was intense. I am not sure if this is what led toMatthew's meltdown, or if there was something else behind it but he quickly went into a very dark place that was hard to get him out of. As with everynight, Matthew is limited in how much he can drink because he is not yet dry at night. Rather than accepting this limitation, Matthew decided that he would run off to a water fountain and drink as much as he wanted. I called to him, and reminded him of the rule and when he continued to be defiant I told him that he had lost the ability to choose what drinks he would have the next day. I wasn't angry, I was matter of fact about the whole thing and Matthew knows me enough to know that being defiant will lead to a consequence. On this night though it didnt seem to matter.

I am not sure still if it was harder for me to watch him be so lost,or harder for me to know that this would be my moms first glance into this side of Matthew. For over 45 minutes I led him around by the arm as he screamed at everyone in his path to get out of his way. He screamed some obsenities, yelled at Jacob, and basically was offensive to all around us. However,as his mom, it was obvious that he was lost in his own head. Mental illness is impossible. It is heartbreaking and horrible to watch. As he screamed we got all sorts of looks, but there was nothing to do but wait for the moment to pass. As quickly as it started, it ended. He apologized and it was over, except for the fact that I was devastated to see him so lost. When all you can say is "at least he wasn't violent" and that is the positive, that is a tough statement.

Many might ask why I didnt take him from the park. Why was there no bigger consequence? There are lots of times that consequences are imposed. However,when you realize that you are dealing with someone who is not with you, to impose consequence on top of consequence becomes ridiculous. that is a lesson that has taken me years to learn. The consequence that was maintained was for his act of defiance- he did not get to choose his drink for an entire day, for Matthew this was a big deal. Beyond that he didnt mean anything that happened,none of it was intentional,he was lost in his head and we had to wait out the moment and when he returned, all was much better.

Thankfully we ended the day with the Muppet 3D movie and we ended on a high note for everyone.

On our 3rd day we started at Chef Mickey. We had our only negative Disney experience. Granted David is David,he can be a handful. We had waited about 20 mins for our reservation and were finally called and he was super excited. He ran over to a statue of Mickey and was playing with it, I ran over to move him, and a cast member slapped his hands together and screamed at him....super undisney like. Obviously again, not cool for D to be touching things he is not supposed to touch, but given David and that he was waiting a while, not a complete surprise......Luckily after a little explaining on my part and an apology on the part of the Chef Mickey staff all was good to go again, David got to meet his hero, Mickey Mouse, and we continued on with our day.

One of my missions is to help people understand that just because a child looks ok, does not mean that they are developmentally ok. It is hard to look at Matthew and David and realize that there are developmental issues. It is important to me that those around us understand my children's strengths and weaknesses and taht when we have a negative experience I help people learn to not be quick to judge a child's misbehavior. If a child does not immediately respond to a strangers redirection, either it is a very defiant child, or potentially there is a disability that is not easily observed. A typical child will respond to a redirection from a stranger.

After our fabulous Mickey breakfast, it was off to Epcot for the day. This was the first time that the boys were really old enough to appreciate Epcot and we all loved it. From the Lands to the Seas they loved all parts of Epcot. Jacob was taken with the Nemo shows, Matthew loved Soaring and David loved the land ride that tells you all about how food is made.

My mom and I were able to bond over the ultimate in embarassing moments.....We went to the Crush show. Crush is the totally cool turtle character from Nemo and he talks to the audience and answers questions about turtles. The kids are all invited to sit up front away from their parents and the parents sit on benches in the back. No sooner had the show started then a child started screaming out.....I will give you 3 guesses who that child was.....and it wasn't David or Jacob. Basically Crush, who is a fantastically sarcastic turtle, stopped his entire show to talk to the "boy who was crying out for his attention". Matthew was given the floor and proceeded to talk all about skittles and his love of skittles, while the woman next to me commented loudly that it would be nice if "Matthew's mom had control of him". Needless to say this was one of those times it was nice to not be known as "Matthew's mom" and I could sit quietly in the dark while he interrupted the show over the next 20 minutes!

For the next 2 days we made more memories in Epcot and the magic Kingdom. Finally on our last day my dad and my brother Andy's family joined us. It was fabulous to be joined by my brother, his wife and their 3 kids on our visit to the Animal Kingdom. It was a very cold day in Florida so the lines were super short and everything was easy to get into. We saw an amazing Lion King show, the Nemo show and did all of the rides in Animal Kingdom. By far one of the favorite places for everyone was the petting zoo. What great memories to watch my 3 kids and their cousins petting the animals, and brushing the animals together. We ended our night together with dinner at the Rainforest Cafe. This was the dinner when David's seizures started.....one of the worst clusters of seizures I have seen him have in years, but being surrounded by family who understood and supported him and me made it as good as possible.

This dinner concluded our fun in Disney World and we were off on our next adventure......Bloom Family Vacation in Vero Beach!