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