They say all good things must come to an end....

...but I wasn't planning on this good thing coming to an end.  Two nights ago, I came home from bible study.  My sister Kelly and I were in the kitchen talking to Eric.  He said, "I guess I'll break the bad news to you.  The STX209 trial has ended."  I said, "WHAT?!"  He said, "It's over.  We got an email from Rush tonight about it."  After assuring me that he was serious, I said, "I am going to cry!"  and went and sat down in the living room.  I was stunned.  I just sat there while Eric and Kelly continued to talk.  Every so often, Kelly would peek in the room at me.  I didn't actually cry, I was just sitting there in disbelief. 

What did this mean?  Would all the wonderful gains Drew has made in the past year and a half be lost?  He's come so far.  He has friends.  He likes school.  He's becoming more independent.  He is enjoying life.  And people!  Oh, it's gut-wrenching to even think about!

My sister reminded me that God is in control and He has a plan for Drew.  That He loves Drew even more than I do.  And He has a real plan for him.  I admit I didn't receive that very well.  I just said, "Yeah, I know, I know." 

So, my sister and niece went home, leaving me and Eric to contemplate the consequences of this disaster.  I wanted him to comiserate with me.  I wanted him to say, "Yes, this sucks," and, "We'll be okay."  He tried, he really did.  But like most men, Eric wants to fix things.  He started talking about how we'll have to extra-diligent about the picture schedules and providing structure.  All true.  But my mind was going to "Oh my gosh, my sweet social boy is going back away." Some things you just can't fix with words.   Then I started crying.  And crying.  I cried until at least 1:30 am.  I tried to sleep, but I couldn't.  The devastation was too much.  Eric and I both tossed and turned all night. 

The next morning rolled around and Drew woke up.  I helped him with his shower and he reminded me that he needed his medicine.  (not that I needed reminding--it's all I'd been thinking about for the past nine hours)  He needs his medicine He needs his medicine!

I counted out how many pills we had and we had 4 weeks and one day's worth.  Something.  Not much, but enough to get him through the school year and Vacation Bible School, something he loved last year.  That got me wondering if he'll even be able to go into our new church without the Arbaclofen.  As long as we've been going to our new church, he's been on it.  So much to worry about.

Drew and Blake went to school and I got out my bible.  I said to God, "Lord, I know this is an infantile way of doing things, but I need encouragement right now."  I opened my bible at random.  It opened to Psalm 88.  It is said that Psalm 88 is the most mournful of all the psalms.    Though my pain was not brought on by any sin, my soul identified with the Psalmist's words of despondency.  I read on to Psalm 89. 

"And the heavens will praise Your wonders, O Lord;

Your faithfulness also in the assembly of the saints.
For who in the heavens can be compared to the Lord?
Who among the sons of the mighty can be likened to the Lord?
God is greatly to be feared in the assembly of the saints,
And to be held in reverence by all those around Him.
O Lord God of hosts,
Who is mighty like You, O Lord?
Your faithfulness also surrounds You.
You rule the raging of the sea;
When its waves rise, You still them."  Ps. 89:5-9

And I knew.  This is a big problem.  But my God is bigger than this.  And I am not sure how it will all work out yet.  But I know that God is able to work it out for us. 



 

Woody is home!

Woody and Buzz Lightyear have been missing from our home for two weeks or more.  We've looked everywhere!  I mean everywhere.  Today, I said to Eric, "Don't you wonder where Woody and Buzz actually are?"  He asked if I had checked the toybox on the back porch.  That's where we keep our outdoor toys.  I told him I was sure I had.  He went out and lo and behold! he found them!  Blake was outside, so Eric called to him and held Woody and Buzz out for him.  Blake was so happy!

Giving Woody a kiss

Wondering how he can ride his bike while holding Woody and Buzz

Woo-hoo!

Now, I know I checked that toybox.  Maybe they went on an adventure like they did in the first Toy Story movie.  Hmmm...

The process of making a schedule

Drew loves his schedules.  He depends on them.  If he knows something is coming up, he can't relax about it until we've put it on the schedule.  We use Boardmaker Studio to make them, then print it off afterward.  He has taken to kneeling next to me as I make him a schedule. 

I have learned that the process of watching me make a schedule is as beneficial as the finished product itself.  Because we talk about which event is next on the schedule, Drew watches me put the pictures in order.  We print it out and he is pretty much done with it.  He likes to have it in case he needs to refer to it to remind himself of what's next.  But once he's participated in the making of it, it's like he doesn't need to refer to it, anymore.   

It is well-known that kids with Fragile X are visual and active learners.  This is a clear case of that.  We could verbally go over the schedule with Drew over and over, but if he helps participate in the process of making it, while looking at visual cues, it sticks in his head so much better. 

A boost of self-confidence

Drew has a bad habit of saying, "I can't!"  He says it a lot.  He'll ask for more milk, so I'll say, "sure, why don't you get out the jug?"  He oftentimes replies by saying he can't do it.  If he encounters the least bit of resistance, he gives up and says,"I can't do it!  You do it."  I think he is so used to me doing things for him that he either thinks he isn't capable or it is just easier to ask me to do it.  Probably both.

This morning he wanted toast.  I said, "Ok.  You get the butter and a knife out."  He of course, said he couldn't.  I said, "Drew,  you can do LOTS of things."  He smiled and said, "Yeah, I can."  Then he got out the butter and a knife.  I know he needs to get more independent, so I am going to make a concerted effort to boost his confidence and ease him into doing  more and more for himself.

Sleep Issues and the X-Men

For us, one of the most frustrating things about Fragile X in the early years was sleep difficulties we had.   I say "we" because a child doesn't have sleep issues by themselves, do they?  Drew was no exception to this Fragile X rule.  We tried a white noise machine, which helped a little.  I would crank that baby up loud.  He liked music (still does), so I would put a headset on him.  I am talking about a Walkman with a TAPE, not a CD or MP3 player that you could set to repeat.  He'd doze off during his songs, but when the tape clicked off, he'd wake up crying again.  We used Melatonin, which also helped, but it seemed that he'd wake up after about four hours.  We tried the Willbarger Protocol (aka-brushing) before bed, strict routines, etc, all of which were nominally helpful.  What helped him the most was maturity.  As he got older, his sleep cycles seemed to figure themselves out and for the most part, he is now a good sleeper.  He still gets Melatonin at bedtime, or he will stay awake worrying about the next day.  And he is an early riser. 

Next X-Man with sleep issues:  Blake.  How is it that song goes, "Second verse, same as the first, a little bit louder and a little bit worse"?  That was Blake.  He'd get up forty-eleven times a night.  We'd put him to bed, he'd get right back up.  We'd rock him, give him sensory input, Melatonin, nothing seemed to help much for that one. He'd get up many times every night. 

Some nights, I'd be going back and forth between X-Men.  First would be Blake, who would cry and yell for me.  I'd put him back in bed, but by that point, he'd made so much noise that it woke his brother up. After several hours of this, a mama wants to cry.  After several hours of this, sometimes a mama DOES cry. 

Blake, too has gotten better over the years.  However, he still has difficulty sleeping sometimes.  Like Drew, he still gets Melatonin at bedtime.  And both boys get sensory input.  Eric pats their back when it's bedtime.  Actually, to someone else, it looks more like pounding on their back.  But they love it, and it is calming for them.  When Eric's not around for bedtime, I lay on top of them and give them "squeezin's"  as they call it. 

Every couple weeks, Blake will wake up at 2 or 3 in the morning.  He will be wide awake, but cheerful.  He'll say, "Mom?  Is it all clear?"  And I'll tell him no, that it is still nighttime and he has to wait until morning.  He'll get back in bed and try to sleep.  Five or seven minutes later, he'll get up and ask if it's morning yet.  Sometimes, Eric and I take turns putting him back to bed.  We sometimes try to redose with Melatonin in the middle of the night, but it is not very successful.  Usually what ends up happening is we just let him get up eventually.  He normally will play with his iPad or watch TV in the toyroom.  He doesn't get into trouble much at night, so we usually go back to bed and he lets us know if he needs something. 

It can be frustrating, but the thing that has helped me the most is that I know Blake can't actually help the fact that he's awake.  In fact, he'd probably rather be sleeping, too.  I try to be compassionate to him and remind myself that these nights are fewer and farther between.  What used to be a nightly occurance now only happens a couple times a month. 

So, if you have an X-Man of your own who can't sleep at night, there is some hope and light at the end of the tunnel.  And if it makes you feel better, there is probably another Fragile X mama or daddy who is up with their child, too.