Welcome to Holland

Welcome to Holland

Written by:  Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. 

I have sat down several times over the past month to try to write this update.  It has been very difficult to the find the words to say.  A friend reminded me of this poem, and it was a great reminder for me, especially now.  You are all probably wondering what does Holland have to do with Daylon.  

On April 26th, we saw the developmental pediatrician and received a preliminary diagnosis of autism for Daylon.  She was certain that he was autistic and wanted us to take him through Full Circle for confirmation of the diagnosis.  I felt a mixture of emotions.  Part of me could see it and agreed with her, the other part of me felt there was no way, not my little man!!  We called to set up the appointment for Full Circle, and fill out all of the paperwork needed for that.  We were told that they were sure that we could not get in to the May clinic and it would most likely be July before we were able to get in.  On May 25th, I got the call that they had  a cancellation and could we come in on the 29th at 8:00 am.  We went in and met with four specialists and spent from 8:00 to about 11:30 playing.  I met with the specialists again at 12:30, with a pretty good idea of what I was going to hear.  We walked away from that appointment with a confirmed diagnosis of Autism and a possible ADHD diagnosis as well.  We have spent the last month digesting it and working on getting him the services he needs.  He will continue his speech therapy and occupational therapy services and we have him in an eight week Social Group now too.  We have applied for a scholarship for The PLAY Project and also applied for Autism Waiver.  These programs require a time commitment of 20 hours a week, but the results that they are getting from both programs is phenomenal.  We are praying that we get in with one or both of them.   We have always been in Holland to an extent with Daylon.  His needs were never what we expected or the same as what the girls' needs are, but we have tried to make it a point to try to enjoy the scenery here in our world.  This does not mean that there is anything wrong with him, he will be okay.  He just processes things differently than the rest of us do, so now we have to learn his language and how best to communicate with him.  

Hearing Test & Surgery Update

Daylon had his hearing test a week ago Wednesday and surgery a week ago Thursday.

Hearing test went well, or should we say as expected. He passed in the right ear and left ear was refer, again.

Surgery went really well. They switched the tubes in both ears, and did the adenoid removal. Doctor said there was very little tissue there, so he feels that was not the problem and it isn't really going to make a difference. I guess at least they were able to get tissue to send to genetics so they can see what kind of genetic make up that tissue has.

Recovery has been a little rough for him. He ended up with a lot of pain, which the doctor was not planning on him having. I am sure that the CPAP was not helping at all with the pain part, but he had to use it because his apnea is so bad. We got pain meds for him and that helped him a lot. He has not been eating well and is back down to 32 pounds. Not great when you consider that the end of December, he weighed 35 pounds. He has a sinus infection and a very stiff neck. He is on antibiotics for the infection. As far as the stiff neck goes, I am told that can be a side effect from the surgery and we are giving him ibuprofen 3 times a day. If it hasn't loosened up by Monday, we will go back in to have him checked again.

UPDATE:

Daylon ended up going through six weeks of PT to loosen his neck muscles up after the surgery.  We had another Hearing test on February 8th, which Daylon passed, but the audiologist could not see the tube in his left ear and the ear was also acting like an ear without a tube.  So, we had to go back to Doctor to see what was going on with that.  It turns out that when the ear was healing the tube pulled back behind the ear drum and the ear drum healed over it.  Daylon had another surgery on March 1st to fix that.  

Endocrine Update

Daylon's endocrinology appointment went wonderful. He was 33.25 pounds and 37.25 inches. He grew 1 inch and gained 1.25 pounds. He is now consistently at the 3rd to 10th percentile and was below the first percentile before starting growth hormone a year and a half ago.

We talked about the use of growth hormone with his sleep apnea and there is not a lot of research out there as far as what those risks impose. We do know that there have been 4 or 5 deaths reported, but those children had very low muscle tone, were obese, and had Prader-Willi Syndrome. Daylon has none of those things so the doctor does not feel he is at risk.

That being said he does feel that it is reasonable to stop his growth hormone to see how he grows without it. We are to use up our current supply, which is about a month's worth, and then stop. His height growth will be reassessed in six months to see how he is doing.