Author: Duhdee

The main reason my life is so sweet is that I get to share it with this man. He is an amazing dad, an amazing husband and an all around amazing person. I think you will see why Monkey and I love him so very, very much! 

~Umma

I don’t sign in and post on here often, but today is a special occasion. Today is National Fragile X Awareness Day. I remember when we first found out about Monkey and fragile X syndrome I really didn’t fully accept it, nor did I know anything about it. I thought that it was something we could overcome. It was something that wouldn’t change us or our family that much. Then it set in, our life was going to be different. We were going to have to work hard to see him walk, crawl, talk. It took us so long to connect with other families who had fragile X-associated disorders touch their lives that I started to wonder what would happen to some of my dreams. What about normal accomplishment, would he ever hold a job, drive, finish school, go onto college, play a sport, go snowmobiling with me?

I still remember when Monkey first started walking, it was a huge celebration. Then he start talking and we would celebrate every new word, even if it was months between. Even now, he’s mimicking my phone calls and it just lights up my day. Every little accomplishment is a huge celebration, no matter how long it takes to get there. We continue to work hard for Monkey and push him beyond his comfort level so that he can continue to amaze us.

Is every day a breeze? Definitely not! We have struggles; we’ve had days or evenings where we can’t go to the children’s museum, aquarium, amusement park, zoo, etc. Or we get there and spend so little time inside that our parking is free. We’ve had days where it’s a battle to get out of the house, nights of little to no sleep, challenges with the school district over placement and services. Do I wish live were easier, sure, but then there would just be something else. Umma recently said, “He has fragile X syndrome, but it does not have him!” and that is so true.

Monkey is an amazing child and part of it is because of fragile X syndrome. He has changed me. He has given me the drive to help change the world, help raise awareness for Fragile X and make sure there are plenty of opportunities for all of those affected to live full, satisfying and productive lives. I am lucky enough to have a job which allows me to help raise awareness for all of the fragile X-associated disorders. We are also a part of a larger Fragile X Family and have many amazing friends. We now know that that all of those normal accomplishments can be reached and we will work to get there!

 Every Tuesday Monkey gets out of school before lunch so we come home and have lunch. Like the past several weeks we walked in and walked into the pantry and I proceeded to ask him what he’d like to eat for lunch. Usually he just takes off and goes to play with some toys while I figure out what to have. Today it was a bit different though.

He came over to where I was standing and started pointing upwards. I picked him up and he was pointing in the direction of the crackers.  I got him in front of the crackers and he started pointing to the left hand side of that shelf.  I moved him to the left and he put his finger on the peanut butter.  I put him down and asked if he wanted peanut butter and he pointed towards the crackers again. I picked him up and we went through the same steps and ended up at the PB again.

Monkey boy told me he wanted PB so that’s what he got for lunch!

Well, he is trying his hardest. Last night we went for a walk and when we got home we decided to relax in the yard for a while. For the past week I’ve been trying to get Monkey to roll around on the ground but he hasn’t been that interested in it, even when I did it…. But when Umma rolls on the ground and says “roll, roll, roll, roll….” it’s the best thing ever!!! He thought it was so great that he made up his own sign for roll and he even said the word…. within an hour he was saying “roll, roll, roll” in his raspy voice and both Umma and I were rolling towards and away from him as fast as we could. Little guy was cracking up as we were doing this and he was having an absolute ball! So looks like when he’s really motivated he can use his words.

Monkey has also warmed up to C. quite well. He’s actually pretty comfortable with all of his new providers; I’m so amazed at how quickly he’s taken to all of them. The past couple of weeks we’ve been trying to work on getting Monkey to know his colors, so on Tuesday I showed C. the signs for Red, Yellow, Green, Blue and Orange. Monkey knew how to say red and could do blue and green when he wanted. She has a toy with those colored gears that spin and she’s been making him use the signs to get the gears. He’s really starting to get his colors down!

We just got back from our visit with the PT and he really enjoys playing on the Gross Motor Room at the school. Today he sat on a scooter and scooted around on it a bit, he also went though their tunnel which is quite impressive as it’s not like any of the other tunnels he’s gone though before. It’s a dark shade of red and it a solid material, most of the ones he’s gone though have had mesh so he could peek out if he wanted. But he still went though it a couple of times, with the motivation of his blanket being tossed though it.

The PT was also impressed at how in tune I was with Monkey’s needs and being able to provide him with the deep pressure when he started to get hyper-aroused. Near the end of the session, when I was helping him to calm down with the “Monkey Burrito” and some deep pressure, she said that I’d make a great therapist…that’s like the 10th professional that’s said that.  She also said that I probably think it’s just natural to be in tune with him and to be able to calm him down as quickly as I can, but most parents are unable to do that. I have been tossing the idea of becoming an OT…. it’s just…. I don’t wanna have to go back to school to do it. LMAO.

Usually I let Umma write up most of the posts but I had to add this in. Today was the beginning of the end of the Early Intervention and Building Blocks 0-3 services. Today was our last appointment with our PT and it was fitting that her last appointment was a co-visit with B. B. and W. were the two who evaluated Monkey initially when we first started EI way back.

Today was a nice trip to the park around the corner and just letting him be the little guy he’s grown up to be. He was running around with the other kids, constantly going down the slide and babbling up a storm! Yup he was dropping “Monkey Versions” of words… he said “ball”, “bowl”, “home”, “swing”, “hill”, and it even sounded like he said “tweet-tweet” while looking at a bird. He also ran over and checked on a couple of kids who were in the play house. He’s really becoming quite the social bug. Just earlier this week at playgroup, on Tuesday, Monkey asked two other kids for toys. He walked up to them and said “For me, please”, using sign of course.

He’s really made me quite proud this past week and it’s hard to believe that in just over a week he’ll be turning 3 and this chapter in his life closes. It’s going to be weird for both of us to have different providers now; hopefully they’ll be just as good as the ones we’ve had so far. Everyone who’s work with Monkey has been fantastic and has really helped us out greatly! I feel as though we really lucked out with some of the best providers possible.

Yesterday B. and L. came for an EI visit and it was a really good visit. Monkey was soo happy and social during the entire visit. We’ve even started a sensory diet for him which involves using a small brush on him to help determine when he needs sensory input and to help redirect into more stimulating activities. After L. used the brush on Monkey twice he  instantly grabbed it from her and tried using it on himself. When he couldn’t get the right motion he handed it back to us to do some more. We’ve been doing it since yesterday and he’s been doing great.  He really seems to enjoy it and it seems to relax him quite a bit.

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