Wednesday, June 19, 2013

It's a God Thing!

It's amazing how when you think your entire world will fall in on you, something happens to catch you right before you hit the ground. This last week has been up and down.  As I had shared last week I was excited that Beckett was able to go to summer camp. Not even 24 hours after posting in my blog my excitement I get that phone call I was hoping I wouldn't get.  They weren't sure they would be able to let him stay.  He was having accidents in his pants and the little girl who was shadowing him wasn't really prepared to change dirty underwear.  I cried all day and night just praying that God would allow something to work out so Chris and I could get a break.  We had gone in to talk to the director and she said to us she really wanted this to work. She told us they were going give it until Friday to decide whether or not he would be able to come back the next week. I figured that Beckett was nervous and had high anxiety that was literally "scaring the poop" out of him.  When we returned on Thursday the director had said she was able to switch the schedule around to allow one of her counselors who was a  "mom" take care of him.  I was so relieved that she did that for Beckett. So far, he has been back this week, still having a couple of accidents but we now have someone who isn't worried about cleaning up a mess.  Come to find out Ms. Dee has eight children of her own.  She said it doesn't bother her at all and she was glad to be able to help.  I was so ecstatic when I picked him up he didn't have one accident today!! I hope the rest of the week at camp goes the way today did.

Besides the good news of Beckett not having an accident today.  The best was yet to come. I got a call from my geneticist this afternoon. He shared with me that he had gotten an email from a researcher at Texas Children's Hospital asking him if he had any families with SYNGAP1. He said to me; "Monica, I had gotten your email and two days later I received an email out of the blue from a researcher here at Texas Children's wanting to know if I had any patients with SYNGAP1.  I was scratching my head and thinking to myself, that's really odd and the two emails were totally unrelated?"  He began to explain to me that they are about to begin a study on SYNGAP1 here in Houston at Texas Children's. They are looking for families wanting to participate that have children diagnosed with SYNGAP1. He ask me if I would have a problem with him giving me Beckett's information. Of course my response was ABSOLUTLEY NOT!! This is great news!!! I am so excited the this has gotten more attention in the scientific world!!! I  am so excited that they want to use Beckett in their study!!! WHOOP!  Before I ended my conversation with Dr. Scott he mentioned again how much of a coincidence it was to get two emails in less than two days totally unrelated about the same thing.  I told him that that's not a coincidence...that's a God thing!! He giggled over the phone and said, "you are probably right, I do believe that God allows things to happen like this."  I told him, "This was an answered prayer!"  He told me, "Yep..I believe in those too!" 

Tuesday, June 11, 2013

Time for Summer!

We started the summer this last weekend visiting Galveston Island State Park & Beach.  You could say that this was Beckett's first "real" beach trip.  The last time we had brought the twins, they were only 16 months old.  I don't really count that one since they really don't remember it.  He loved the ocean.  He walked right into the water and into the waves.  He would have floated away if his daddy wasn't right there with him.  He was so excited!  I don't think I have ever heard him laugh so hard every time a wave hit him.  He laughed constantly for almost two hours strait.  We had some of the most fun that day and more was on it's way!

Beckett's First "Real" Beach Trip 2013

This week Beckett has begun his first ever summer camp.  I am excited and worried at the same time.  This camp is not geared for special needs children. Mrs. Darlene the director of the camp has made it possible for my son to be able to participate with the kids his age.  I am happy to know that she has taken an interest in making my son apart of her program.  She has made accommodation's for him and to allow him to be with his twin sister for 6 weeks out of the summer. A young teenage student has been appointed a help the lead counselor with Beckett and to follow him in every activity planned, even in swimming.  Of course, my biggest fear is him swimming...he can't!  He has no concept of danger or fear.  I also worry about him wandering off unnoticed.  I know that they are aware of all his habits and won't let that happen.

So today is his second day.  I haven't had a phone call yet to come get him, so I am assuming he is fitting in just fine.  I am so thankful that the FAC director has seen a need to include the children in her program with special needs.  I wish more childcare facilities did a better job of mainstreaming special needs kids with others.  I believe it is not only good for the special needs child, but the child who has no disabilities to serve others who need it.  I am sure his experience this summer will help him continue to progress and develop his language and other skills and also maybe expose others to differences they are not use to. 

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Sunday, June 2, 2013

My Special Boy: New FB Group for SYNGAP

My Special Boy: New FB Group for SYNGAP: Anyone who is a parent or caregiver of someone who has a variance in the SYNGAP gene is welcome.  Please join us to connect with other families...

New FB Group for SYNGAP

Anyone who is a parent or caregiver of someone who has a variance in the SYNGAP gene is welcome.  Please join us to connect with other families who are dealing with similar situations.