Day 56

Over the last few days we have added another supplement.  It is called Inositol powder.  It is to help stimulate brain patterns and help develop better connections in brain development.  We have been adding it to his special peanut butter or ketchup to help hide the taste.  So far so good.  The new thing of the day was today he put his own socks and shoes on this morning.  He was so excited to show Dawn this morning!

Not sure if it is related to the new powder but this is something that he never really wanted to do and always wanted one of us to do for him.  But this morning he wanted me to close my eyes and then show me that he put his socks and shoes on!

PC

Day 54

Today Ryan did something that he never would have been able to do before the diet.  In the afternoons at his day care facility they combine classes as other children get picked up.  One of the activities that they do is a child is selected to "read" a story to the class.  This usually involves one child picking a book, sitting in the teacher chair, and "reading" the story to the class.  Before this diet, Ryan would never have been able to handle everyone looking at him, sitting long enough, or having the vocabulary to explain the story.  However, today he was selected and he went right up and did great.  He turned the book around to show everyone what was happening in the pictures and explained what was happening.  They told us that he he acted like the teacher.  He told other children to sit down, pay attention, and called on others to count the clouds in the picture.  What a difference in such a short amount of time.  The two teachers in the room still can not believe the difference in him. 

When I went to his room to pick him up he was playing with four other boys racing cars around a small track.  He was playing with the children and interacting with them.  In the past, he would be playing in the same area but playing alone with no interaction with the other children.  Today was a different story and it was great to see him playing with other children.  In the past, the other children in the program would not play with him because his meltdowns were so unpredictable.  Now he is right in the middle of things and having a good time. 

A good day for Ryan.  The only down side is that Dawn caught what Ryan, Julia, and I had, she is so sick! 

PC

Day 53

Chances are you’ve heard of these statistics…


• Autism affects 1 in 110 children and 1 in 70 boys

• Boys are four times more likely than girls to have autism

• Approximately 1.5 million individuals in the U.S. are affected by autism

• Autism costs the nation over $35 billion per year


Here are a few more numbers that we’d like to share…

• 85 – the number of days since Ryan was diagnosed

• 53 – the number of days Ryan has been on the GFCF diet

• 52 – the number of people that walked with The Ryan Express for the Autism Speaks walk on 6/6

• $3800 – the amount of money raised by members of The Ryan Express for the walk

• 87 – the number of students who wore a belt buckle to Mahopac Middle School on 6/4 to support the Buckle Down for Autism Awareness event

• 130 – the number of Ryan Express shirts purchased during the past month

• 261 – the number of Ryan Express fans on Facebook

• 0 – the number of days we’ve had to face all of this alone

For all you’ve done and continue to do, we thank you from the bottom of our hearts!

-The Campbell Family

DC

Day 52

When we first started this blog we were focusing on the GF/CF diet.  But after 52 days we seem to have the diet down.  The fact that the medical profession thinks that this diet is one step above witch doctors is amazing to us.  We know that this diet does not work for everyone but not giving it a try or having any serious medical studies seems insane to us.  I guess if they have a study that shows that this works, then there must be a cause of Autism besides genetics.  Most parents get over the why of Autism fairly quickly.  Most people are practical and want to know what they can do now to help their child.  This diet, while difficult at first, has been a life saver for both us and our family. 

In this blog we seem to be doing more of a combination of diet and trials of having an Autistic child.  Our new trial is Occupational Therapy.  Ryan was tested in October and found to have a 12% delay.  He was re-tested in May and found to have more than two standard deviations below the mean in several areas.  Yet at our annual review our school district is telling us that since Ryan is only having OT for six weeks there is no way to show regression in skills.  This being the case, they will not authorize therapy over the summer but will pick it up in September.  To us this seems crazy.  If his lack of skills went from 12% to over 25% in six months, how does this not show regression in skills?   We know that New York State changed the rules and that school districts are now required to pay a percentage of costs for pre-school services.  This is a new rule and districts are scrambling to find ways to cut costs.  But what are the cost of these savings?  So we are now consulting an attorney and going that route.  As educators we used to wonder why special education parents were so crazed when they got to the secondary level.  Having only been a special education parent for a year, we have become those parents.  We completely understand these parents now.  Having to fight through all this bureaucratic insanity will make anyone crazy. 

We will keep you updated.

PC

Day 51

 

Thank you to all of you who were able to come today for the walk.  There were 52 people that came out today and supported Ryan.  We wanted to thank all of you who have supported us in this process as we learn to be parents of an Autistic child.  Ryan was very excited that everyone was wearing the same shirt.  While we are not sure if he knew it was for him, he was excited for the walk today.  We don't have a complete tally yet, but we raised over $3500 dollars for this walk.  The weather held out and it was actually very sunny and hot down in Purchase, NY today.  The weather called for torrential rain and lightning during the time of the walk.  

Ryan and Julia did a great job and walked the majority of the way around the campus.  We went over to Dawn's grandmother's house to have lunch.  Of course we did not prepare for that possibility with food for Ryan but he did great.  At one point he saw cookies and asked for his.  Dawn told him that they were at home and he would have to wait.  The old Ryan would have flipped out and had a huge meltdown.  The new Ryan waited until we got home and then asked for his special cookies.

PC

 

Day 50

Ryan woke up at 5 am telling us his stomach hurt.  Before 6 am he had already vomitted twice.  The rest of the morning continued with him vomitting several more times.  He refused to eat and would barely drink anything.  At noon he wanted pretzels, and that was the most he ate all day.  He napped for almost three hours and he barely touched his dinner.  While his spirits picked up towards the afternoon and evening, he still wasn't his usual self. 

Tomorrow is the walk for Autism.  I really hope this is just a 24 hour bug and he wakes up feeling great.  I would hate for him to miss out on tomorrow, and I know many people joining us for the walk will be disappointed if he is unable to attend.

DC

Day 49

We are psyched about the walk this weekend.  Colleagues at Mahopac Middle School purchased team shirts and wore them today to support Autism Awareness.  Phil and I are blessed to have so many people in our lives that have embraced our cause, and more importantly, have embraced Ryan.  While Ryan may not realize it now, he is not only being raised by his parents, but also by all of the people who are there for us.  There is a saying "It takes a village to raise a child".  It goes without saying that Ryan's village includes our family and friends, his teachers and support staff, and his doctors.  But it goes beyond that list.  It includes the colleagues we work with who have been supportive and lend us their ear and a shoulder to lean on at work.  It includes the people that have provided us emotional and financial support.  And I can't forget those that check in with us daily to see how we are doing, provide us with information and encouragement, and motivate us to write this blog each night.

For many years I questioned my purpose in life.  I often lie awake in bed crying because there are so many issues in the world that I can't change.  There are millions of people (and animals) suffering from disease, hunger, and abuse.  I want so badly to make a difference, but have never felt empowered to do so.  Until now.  For the first time I am recognizing my purpose and realizing what I need to do.  And it is the support from this "village" that gives me the strength.  Thank you from the bottom of my heart!

DC

Day 48

How do you get a 4 year old with a language delay to understand that it is okay for him to share his food with others, but he can't have their food? During the ride home today Ryan and Julia were snacking on pretzels. At one point they started to share their pretzels with each other. Ryan didn't understand why he was allowed to give Julia one of his pretzels, but Julia wasn't allowed to give him one of hers. The temporary fix: No sharing food at all. This rule came after Ryan ate a couple of Julia's pretzels. It's a bit difficult trying to manage what they are doing in the backseat while driving on the Taconic.

After Ryan's bath tonight I clipped his fingernails. It took about two minutes and he waited patiently until I finished. I remember when grooming activities used to be more difficult for us. When he was younger one of us would have to hold him down to clip his nails. He used to flip out as soon as he saw the clipper! Now he takes it all in stride.

Just tonight I realized that I could add pictures and video to the blog entry! I went back and edited a half a dozen blog entries and added pictures to them. I'm adding a video to this blog. It was taken over Memorial Weekend. Ryan is learning how to drive my dad's bulldozer. He has always been fascinated seeing the bulldozer when we are upstate visiting my parents, but he was not crazy about its loud sound. But this time he was okay with it and spent about 10 minutes riding around on it. He really enjoyed the ride, especially when he got to use the lever to raise and lower the front bucket.

DC

Day 47

Today we had a good day with Ryan. He did a better job at school today than yesterday (yesterday was rough for him after being off for several days) and he fell back into his normal routine. We have been noticing that Ryan has been doing much better with the day to day tasks that we all take for granted. He is starting to put on his socks and shoes, get dressed, wash his hands, go to the bathroom, and set the table without help. While these may not seem like big things, to us they are huge. Little sparks of independence is what we live and hope for with Ryan.

After dinner we all took a walk to the end of the development and back. It is about 2 miles and over the last few weeks Ryan has been riding his tri-cycle the entire way. He has to put on his spider man helmet, knee pads and elbow pads before we can begin and he is so excited to get his bike out. His coordination has improved so dramatically that we have trouble keeping up with him as he races down the street. One interesting point is that he has to win. He hates it when we push Julia ahead of him and he races ahead to let us know that he wins!

Overall a good day and we are getting ready for the walk this weekend. Hopefully we will have good weather and a large turnout.

PC

Day 46

I reconnected with an old high school friend tonight. She recommended a book by Carol Stock Kranowitz called "The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder". I just ordered it online and am looking forward to reading it when it arrives.

Her son, now 6, has gone through many of the same things Ryan has gone through. It was nice to be able to share stories and receive support from someone who knows what we're going through. It was a very hopeful conversation and brought new perspective to our journey. We're making plans to get together this summer. I'm looking forward to seeing her after all of these years, and I can't wait for our sons to meet each other.

DC