Day 70/week 10

Today we had my sister and her two daughters come for a visit.  My sister has not seen Ryan since we started the diet and was amazed at the difference.  When she came to the door he rushed to open it and welcome everyone to his home.  He took his cousins hand and helped her into the house.  Ryan did not mind that she played with his train set and knocked over the Lincoln log house.  He thought that it was very funny and demanded that I rebuild the house so he could knock it over!  He had no meltdowns and we had a good night.  He went up to give everyone a kiss goodnight and went off to bed.  It was great to see that he was also able to interact with a new baby as well.  Although he was a little rough and we have to work on the personal space issue, he did really well with the little baby.  He wanted to play and talk to her, he tried several times to get her to laugh and she responded to him acting silly.  He even took one of the Toy Story Woody dolls and performed an impromptu puppet show for all of us after dinner.  To my sister this was amazing.  It is tough to see all the progress that he has made when we are living it minute by minute, but having someone admire all the progress goes a long way!

Since this is the 70th day of the blog we are going to post at the end of each week.  If anything really interesting happens we will post sooner but we both thought that once a week is a good interval for this blog.  Thanks to all of you that read this blog and we will post at the end of next week.  Have a great weekend.

PC

Day 69

It was a mixed day today.  Daycare reported that he had a rough day.  He was in a bad mood all day and came off the bus exhausted.  However, when he was home, he was fine.  He and Julia had a Toy Story movie marathon and they got along well together.  He took his medicine well and even saw me mixing his powders together with his peanut butter.  He ate the sandwich without complaint.  Not sure what is the cause but we are still hopeful that this is just a phase and it will pass.

We will have to wait to see what tomorrow brings.


PC

Day 68

Whatever the reason, Ryan seems to be over whatever happened this past weekend.  He was very calm and very out going today.  Dawn was out this evening and when she called she asked if they were in the same room.  He was quietly playing with his trains and having a good time.  We also received a good report from daycare as well.  All in all a good day.

PC 

Day 67

Success!  We finally got Wappingers to agree to give Ryan OT twice a week for the summer.  I still can not believe that we had to go through all these hoops to get them to agree to grant OT for seven weeks.  What an ordeal but we did receive a lot of help in the forms of letters of support from his current OT person, his pediatrician, and original neurologist.  It finally took us emailing, faxing, and calling the chair of the CPSE and threating to have a full meeting with attorneys to get them to finally agree that a child with Autism need OT over the summer.  I am sure that we have a mark in Ryan's folder at Wappingers that we are one of those parents.  But we are ok with that.  It really pays to be persistent and if you want something you have to fight for it.  But it was getting a bit much!

Ryan had a good day today.  He let Dawn finish getting his hair cut and when I walked into the house from graduation he ran right up to me to tell me that he missed me.  He also told me that he liked my red shirt that I was wearing.  Dawn reported that he still had a few meltdowns but he was easier to calm down.  We really don't know what the issue has been but we have a feeling that we will be dealing with this for a while.

PC

Day 66

So today wasn't as bad as yesterday, but he was at school most of the day.  There were a few times this evening where he had a meltdown, but nothing like the meltdowns this weekend.  He didn't want to take his medicine at first; instead, he wanted a lollipop.  He kept saying that he didn't want to take medicine today.  He ate well.  After a bowl and a half of GFCF pasta he asked for a peanut butter sandwich.  This made it a little easier for us to hide his powder meds, but he still had to take the liquid ones.  A couple we can hide in his juice because they don't have much of a taste, but there are two that have a distinct taste and he takes them by themselves.  Phil was finally able to get him to take them.

During his bath (he didn't want to take a shower tonight) he didn't want me washing him with soap.  Whenever the soap touched his skin he would frantically wash it off with water.  Several times he said the soap was going to burn him. 

On another note, we still do not have his summer O/T finalized yet.  We've made several attempts to have a dialog with our school district's special education department, but they are aweful about getting back to us.  If Phil doesn't hear from someone in the morning he is going to call the Superintendent.  I hope to feel a little less stressed once his summer schooling and services are squared away.

DC

Day 65

Happy Father's Day to my wonderful husband Phil.  Without him I wouldn't be able to do half of the things I do.  He gives me strength and support and there isn't anything he wouldn't do for our children.  He's wearing the handprint shirt that the kids and I made him last week.

I feel bad that his Father's Day was a bit stressful.  Ryan had another awful day.  He handled the morning fairly well.  We took the kids to see Toy Story 3 and they loved it.  But then the rest of the day was like a roller coaster ride.  His behavior was erratic, unpredictable, violent, and contagious- Julia's behavior mimicked his, making for a tough day for us (and our company).  And we have the hole in our wall to prove it!

I don't think he ate something yesterday or today that he isn't supposed to have.  I'm not sure where this change is coming from.  I fear that his body has built up a tolerance and has become so accustomed to the GFCF food and supplements that their effect has worn off.  I'm crazed thinking that this is the case. 

What made these past two days even worse for me is knowing that we haven't seen this kind of behavior since before the diet started 65 days ago.  We were beginning to forget how bad it used to be, and the past two days has brought back all of those memories.  I can't go back to that time, especially with the summer coming up; I can't be home alone all day with him acting like this.  I will go insane.  I'm at a loss.  I don't know what to change or adjust at this point because I have no clue at all as to what may be causing these mood swings.  I guess we'll have to wait it out a couple of days and see if this passes.  He doesn't go back to Dr. Bock until the first week in July so for now we will have to figure this out on our own and just be as patient as we possibly can.

DC

Day 64

Ryan was wild today.  I don't know if it was something he ate, but his erratic behavior lasted most of the day.  At times he was defiant and violent.  He didn't want to follow a routine, and he had this non-stop energy.  In the afternoon we were able to bribe him with a lollipop to sit still so that my mom could cut his hair.  She got about 3/4 of the way through and he decided he was finished sitting there.  While I would have liked to force him to sit there, I was happy that he agreed to get his haircut and didn't want to push my luck.  If I force him, next time he may not be willing to sit there.  I figured it was more important that he trusted we would stop when he wanted us to, rather than have a perfect haircut.  Maybe we'll be surprised and tomorrow he'll let her finish the job.  My guess is it will be several days, maybe even weeks before he is a willing participant. 

Once 6pm hit he started to wind down and we were able to leave the kids at home with my parents.  Phil and I finally had a chance to go out to dinner by ourselves to celebrate his birthday.  We're a month late, but we're glad we had the chance to go.  We went for Japanese hibachi, something we both enjoy and have taken the kids to a few times.  Now that Ryan is on a GFCF diet, it doesn't seem like a possibility for all four of us to go together anymore.  Since there is gluten in soy sauce, there isn't anything on the menu we would be able to feed to Ryan, unless maybe plain white rice.

Father's Day tomorrow.  We are surprising the kids and taking them to see Toy Story 3.

DC

Day 63

Ryan is taking the supplements much easier each night.  While he puts up a minor struggle to get on the counter, he does take the cod liver oil.  It is a little crazy giving him the oil when you are alone but overall it is not too bad.  The wild card is Julia.  She wants to see what is happening and is underfoot trying to see, which causes Ryan to want to look down and talk to Julia!  So it is always an adventure giving Ryan his supplements.

PC

Day 62

I'm sharing a link with you because it made me cry, but also gave me hope and made me smile.  Enjoy...

http://news.yahoo.com/video/us-15749625/autistic-student-s-inspirational-graduation-speech-20371829#video=20392356

DC

Day 61

Today we were pleasantly surprised to receive a letter of support from Ryan's neurologist for OT.  We are still waiting for a letter from Dr. Bock but we are ready for a fight with our school district.  We feel that we are justified and since they already verbally agreed to have one day a week OT, we just have to present a strong enough case for two times a week.  The ironic part of this is that we had to hire the services of an special educational attorney.  Yes, we became those parents!  I still can not believe that we have to go this route and I am even more surprised that our school district did not think that we would!

We will keep you updated.


PC

Day 60

Well it is day 60 of the diet.  Looking back at all of the successes and set backs we have had over the past 2 months it is important to remember that this is happening to Ryan and in part to Julia as well.  They are two little children having a grand time with each other and their friends at school.  They say good morning to each other every morning and kiss each other good night each night before bed.  They are so happy to see each other that we get reports from day care that when they run into each other they have to give each other a big hug.

Through all of the craziness of doctors appointments, CPSE meetings, faxes, emails, phone calls, supplements, and constantly watching what Ryan eats we have to consider ourselves very lucky.  We have support from family and friends and we have our little boy back.

PC    

Day 59

Back on Day 39 I mentioned something about school lunches.  Here is a portion of the information I found according to the "Talk About Curing Autism" website.  The article is called "Must Schools Provide Casein and Gluten-free Foods If Parents Request It?" by Donna Rosinski.

"School districts must provide substitute foods at no extra charge to the family if a child is considered handicapped under Section 504 of the Rehabilitation Act of 1973.  There are certain conditions that must be met, though.  First, the nutrition goals must be written into the IEP, which then allows special education funds to cover the costs.  Also, the request must be supported by a statement signed by a licensed physician.  This statement must identify the child's handicap and explain why the handicap restricts the child's diet.  It also has to specify the major life activity affected by the handicap (it helps to relate the diet to the educational goals in the IEP).  Finally, the statement must specify the food or foods to be omitted from the child's diet, and the other foods that must be substituted."
   
If you are dealing with this situation, check out the entire article at: http://gfcf-diet.talkaboutcuringautism.org/gfcf-school-provided.htm

DC

Day 58

This morning Ryan was so excited to show Dawn his drawings.  He spent most of the morning drawing in a coloring book that he got from my mom the day before.  He spent about 15 minutes telling Dawn a story about the drawing of an ambulance and how she had to go to the doctor yesterday.  He was so animated and involved in the story it was great to see.  Another thing that keeps us going and motivating us to continue on the diet and supplements.  It was so great to see him engaging in the story that he was telling Dawn.

He also wanted us to bring down a plastic table from his room so that he and Julia could play restaurant with in the middle of the living room.  He even went so far as to ask Dawn to move the little kitchen set in to the middle of the floor so the table would fit better with all four chairs.  They played this set for almost an hour straight and had a grand time.


Tonight we had company over that had not seen Ryan since the second day that we started him on the diet.  They could not believe the changes that he had shown in such a short time.  They were blown away with him engaging them in play and story time with his Thomas the Tank Engine set.  They told us that to them his vocabulary and language had progressed so far they could not believe that they were seeing the same child. 

A great day!


PC

Day 57

Ryan's new food of choice is organic peanut butter.  He had three peanut butter sandwiches on toast today.  We have started to mix his powder supplements in with the peanut butter because he is having that more than ketchup.  The new thing today was a shower.  He announced that he wanted to take a shower like Daddy and not a bath like Julia.  We had tried a shower in the past in an effort to combat the dry skin but that ended in total failure.  He stood in the corner of the shower freaking out about the water!  Today was a totally different story.  He went right in and wanted the bar of soap.  He soaped himself up and asked for the shampoo.  I was wondering how I was going to get the shampoo out of his hair since he has tubes in his ears and cannot put his head under water.  But he walked under the shower, bent his head forward, and let the water rinse the soap away.

He was so excited to tell everyone today.  He ran down stairs to tell Dawn and Julia (granted naked and dripping wet!) but he was excited!  When my mom called this morning, he got right on the phone to tell Grandma that he took a shower!  He is making such strides each day that we almost forget how difficult it was to have him try and learn new things.  We will have to wait for the next new thing!

PC

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