I'm not mad! (About STX 209 being cancelled)

How could I be mad?  I got to experience my son in a different light for 6 whole months.  All because Seaside Therapeutics spent their money on our child duing the trial.  That's a blessing.  When there is so much to focus on in terms of things to work on improving for my sons, I have to take all the blessings I can get!  Someone paid to let my child take an experimental drug that helped him!  Soak that up for a bit.  Drugs cost lots of money to bring to market.  We were lucky enough to be on the experiment side of arbaclofen.  If it gets to the market stage, the drug company deserves to make a lot of money.  They invested a lot of money! 

Just like the school situation.  Charlie had developed (all as a part of fragile x) difficult behaviors prior to our participation in the trial.  In fact, he was getting suspended for aggression (towards staff, never another child).  He had difficulty transitioning and there were many cases where proper training on de-escalating the behavior by redirection would have helped him.  My husband found out about the trial, we got him on the arbaclofen, and followed the protocol.  Given it was double blind, we weren't sure that he was getting the drug.  Although he started showing affection and actually offering to tell us he loved us and hugging us!  During the end of the trial when they titrate down, we realized just how much Charlie had benefited from the drug!  He hit a wall in terms of ability to be taught, to control his impulses, and to inhibit his aggression.  We had to take a month off of school for time to get Charlie ramped back up on the arbaclofen and overcome all of the behavioral issues.  We did so and noticed good results.  We also made the very difficult decision of starting him on Abilify for his hyperactivity, aggression, and impulsive behavior .  He was displaying less of these behaviors but still not free from them.  Abilify really helped!  We wanted to get him back to school.  Instead what we were offered was two days a week at 1/2 each session, OT/ST treatment and then PT treatment.  Totaling an hour a week.  We agreed given the BCBA was present and they could see that Charlie was in fact, doing fine and could be socialized again.  After all, he hadn't shown any signs of aggression.  It was then that the principal said she was afraid to let Charlie come back to kindergarten even with the BCBA present!  We were not happy.  We spoke with another very involved and self advocating as well as support to other parents with special needs families, mother of a child at our school.  She spent two hours on the phone with us and we had never met her before this call!  Then she wrote a very supportive email.  Our developmental pediatrician also wrote an email saying, "Hello!  You can't deprive a special needs child of his education.  Especially with an IEP and BIP in place!".  And it all worked.  (Failing to mention ALL that we did to pull strings on pupose here.)

But guess what?  We weren't mad after we noticed they did everything we asked for!  We went to the IEP expecting some resistance.  There was none!  They agreed with us!  They agreed to let Charlie attend lunch with his classmates prior to therapy (with the BCBA present.)  And to 15 hours a week of ABA therapy with trained staff at Grafton at their location and therapy on the side, for the summer.  And the therapists might even be able to come to the Grafton office rather than me having to take him to the school!  Oh and not just the ESY summer, all summer! 

So tying these two situations together, lets look at why having a good attitude can help...

1) Because our children mimic what they see.
2) We need to treat others the way we want to be treated.
3) Realize that others do want for your child what you want for your child.
4) Being grateful goes a long way!
5) Not being demanding helps you to maintain control of the situation and helps with your case of asking what you want to get.
6) You can meet great people along the way and build relationships with them based on your outlook and theirs.  That can translate into having meaningful deep friendships!
7) The school staff/trial staff will look out for you more if you treat them well!
8) You stand out to others by projecting positivity.
9) You feel good about yourself and who you are. 
10) SHOULD Go in #1 spot!  Because God is present in our lives!

So I hope this inspires anyone who is having trouble with this transitional time.  It's meant to inspire you.  We don't have it easy.  Some of us have FX times one, two, three, or even four.  Some of our FX kids hurt us or others.  Some cannot do for themselves as a typical child can.  But the common thread here is that we learn from one other and inspire one another.