Ready for school!!

We have finally signed Robbie's IEP (Individual Education Plan) for the 2009-2010 school year. It took a lot of emails and phone calls from Rob to get them to agree to meet. We felt this should have been resolved in August- but I am hopeful that the services he will be getting will help him- ultimately be "cured".
Tomorrow Robbie will attend his regular pre-school day- Monday- Thursday- 8:23am- 10:53am- but now will receive an extra hour of Applied Behavior Analysis from 10:53- 11:53am. He will also get 1 hour of occupational therapy a week. 30 minutes with a small group and 30 minutes individually- during his preschool week. Speech therapy is every other day 30 minutes either individually or small group.
As I write this Robbie is running back and forth yelling "eeeeeeee" and Lexi is attempting a headstand. So- once again we are excited to get back to a program! :)

The importance of diet and schedule- and not being too cocky

I was too cocky today. I came home after a long week of traveling for work and was so impressed with Robbie's speech ( after a week of pre-school) I did not follow my mothers instinct. Saturday night I was so happy to spend quality time with Robbie- I was not thinking about the snack he picked from the fridge. He had helped himself to some pre-cut cheddar cheese slices. I watched him bite into it and say "Hmmmmmm". He helped himself to 2 additional pieces. My hope was- he is not like all these 'CASES" I read about. Dairy will not negatively affect him. How much easier will my life be if I can incorporate dairy into his and my family's diet.
He seemed fine in the morning- fine enough that I let him pick out yogurt at the supermarket. ( How soon you forget to really look at labels of the foods you no longer purchase- red and blue food dye, high fructose corn syrup- artificial this and that. This food is off limit anyway) I remember reading in one of the many books I have absorbed over the past few months- " my son's behavior was erratic and off the wall and then I saw the note in his back pack- your son ate cheese today" I told my mother in law about how relieved I was that Robbie didn't seem have that problem and explained the passage in the book I read to Rob- (Dad). Robbie was a little wired this morning but nothing to cause concern. As I replay our day- I want to cry. I took Robbie to the grocery store in the morning. While his speech was good, behavior was a little off. We pulled into the check out- he sat in the main part of the shopping cart. The women loading bags was trying to get him to move his legs- to make room for the grocery's. He would not move. I explained- he is autistic- plant the items around him and I'll put any extra on the bottom of the cart. Now- I have gotten used to people saying" I never would heave guessed your son is Autistic." She looked at me- like she already knew. In retrospect- it could have been the chips he was holding in one hand - OR- the bag of rocks he had on the other side. ( Rocks from our driveway is a new obsession and I came home to multiple zip lock bags of rocks in the garage and house.)
At home Robbie was unquestionably more wired than usual. He must of jumped on our bed 500 times without getting tired- etc, etc. I decided to take him for a bike ride. He was so hyper and I did not want him to wake his sister from her nap. I also really wanted to spend some quality time with him. ( being gone all of last week and most of next week for work) Robbie got into the stroller attached to the back of the bike and sat very patiently as I rode around our neighborhood. I did notice him clenching his hands and closing his eyes- but I've seen this behavior a lot. He expressed his desire for "water" ( going to the lake) every few minutes. We did stop and had a great time at one of the beaches. When it was time to go Robbie did not want to get into the bike carrier. We battled and the decision was made to walk next to me as I walked the bike. A few feet into our journey- a man who had recently pasted us-was on his back in a ditch, convulsing- obvious seizure. A women who had spotted him first screamed for me to call 911. A few minutes later - you can imagine the chaos. Neighbors, police, family members, ambulance, cars asking what happened- (remember - we live in a very small town.) Robbie had what I will always refer to as a classic autistic moment. He held his ears and screamed, while clenching his fists. He would not get into the bike and I yelled at him for running into the street while the chaos and extra traffic flow was happening. He would not walk- had to be picked up and was very distressed. I had called in to 911 to explain where we were for the man convulsing on the side of the rode. The 911 operator was yelling me to stay on the phone and calm down after I had given her all the required information. " I have an autistic 3 year old who is running into the street holding his ears- SORRY" i yelled and hung up.
I called Rob to come get Robbie. Thankfully he appeared a few moments later.

How is this all interrelated? Dairy is a food Robbie can not have. It causes him to become over excited and not sleep- nap etc. When he is tired and off schedule- everything is more intense and harder. I will never forget this day and the look on my poor child's face. His "gut- or ability to digest foods" rules his rest. His rest rules his coping ability. As parents- we make the rules.

We Miss Mommy

Well, my wife(the real author of this blog) is away for work this week. Honey, we really miss you!

I thought maybe I could post something because since school has started for both Robbie and myself things are getting frustrating. The ABA services my wife has talked about before have not started up again along with school. For some reason the school district wants to try and cram three different services into a 2 1/2 hour pre-school day. Now I have to say that they have worked realy well with us over the summer....the pre-school that is. But now that pre-school has started its like, oh well, we'll get to it when we get to it.

I think I went from the parent they used to like to talk to to the guy they will not answer the phone for. All I'm trying to get accross to them is that two Pediatric Neurologists and one Developmental Pediatrition that we saw at least had one thing in common..."whatever you are doing DON'T STOP because it's working." Everytime I tell the head of the child study team at my son's school this she absolutely changes the subject....It drives me crazy.....but I stay calm.....for now. Well, I'm gonna end here because it's obvious that my wife is a much better writer than I am so I'll spare you all the time.

I also wanted to add that a lot of you have sent very nice wishes, thoughts, and prayers our way. I would like to say thank you for that!

Another Doctor's apt.

We had another doctor's appointment with a developmental pediatrician. We chose this doctor because we could not get a local appointment for 2 YEARS- yes I said 2 YEARS. (Once again- I heard that voice " Are you kidding me????" ) We booked the appointment in June and were seen by Children's Specialized Hospital in North Jersey in late august (much more reasonable). Rob and I agreed that we really felt good about this place and this doctor. She was much warmer than the doctors we've seen previously. She listened and gave us some great positive feedback that we have been dying to hear. The one thing that did stick out to me was her "diagnosis" at the beginning of the appointment "mild", "no reason why he won't go to college", "so much better than most I see" seemed different that the one at the end of the appointment. As the appointment progressed Robbie took his shoes off (for the 3rd time) and began a behavior we've become accustom to seeing- the concerned look on her face could not be ignored. "I am concerned with the cyclical behavior." we were told. It's hard for me to articulate these behaviors- Robbie will begin playing with markers and take all the caps off. Then he will put them somewhere- diaper bag, purse, drawer, under the couch- a few at a time for hours. He will draw with markers and only use 1 color (preferably green) and will initiate someone else to use another color on his paper- but will immediately cover it with the green he was using. I kick myself- because I used to think -I'm so lucky my son will sit with these craft projects for such a long time- while I make dinner or clean up. Recently it has been these behaviors that are cause for concern. He can't get out of the cycle he creates. If you force it- there is a major meltdown. At the end of the appointment we were told he falls somewhere in the middle.- "low middle"- but still- no more information than we have received previously.

We're anxiously awaiting what this school year will bring. Robbie will benefit from the structure and schedule- however we're still battling with the school district in regards to what services he gets, for what length of time and can we get any of them after his 8:23- 10:53 am hour preschool day. How will they fit speech therapy, applied behavior analysis and occupational therapy in a 2 and 1/2 hour day- 4 days a week? What about socialization? As we've been told and have learned- Autistic children do not learn by accident. They do not pick up the information and social cues other children do. They need to be taught everything. They need to be taught EVERTHING!!! They need to be TAUGHT EVERYTHING!!

Meeting other Autistic children.

We went to the lake this weekend. It was great- quiet- very few people there because of the rain earlier in the day. One of 2 groups of people had a dog. Dogs are generally not allowed at the lake. The other group- a father and 3 young boys- were swimming in the water and telling the pre-high school boy and his father that dogs were not allowed. As we watched this discussion between the groups- one thing was very obvious -- to us. The boy had some type of special need. The father was calmly trying to explain that the dog was a "companion" dog and therefore allowed on the beach. The man - with the 3 young boys- was arguing, demanding proof and "calling the police." This upset the special needs boy. He began cursing and getting upset. His father- once again- was calmly showing him the rules posted at the lake. The dog was allowed because of the circumstance,with tags to prove it.
Now- i can't lie. I prayed this boy was not autistic. I hoped he had some other special need. But, I knew. I knew when I first looked at him and he had trouble with eye contact. I knew by his awkward movements. I just knew. This boy was autistic.
The father explained that they had moved to NJ from Los Angeles, CA because after much research- NJ- has the best schools/programs for Autistic children. He said his son has made a lot of progress and he's very happy with his development.
Once again- I can't lie- watching this boy made me sad. This is not what I hope or imagine for my son. I hope/want better than what I saw in this boy. My heart ached for him and his father because the situation at the lake was so stressful. I know all children on the Autistic spectrum are different. I want Robbie to be in the percentage of children that are cured. We- his Father and I - are doing everything in our power to make that happen. But what if it doesn't??????

Good Days. Very good days, Bad Days, Very bad days

Some days are great and some are very tough. What constitutes a good day? A full night sleep (and a decent nap)and 2 bowel movements are the basics. After that - good eye contact, following direction, changing activities without a meltdown, minimally stimming- repetitive behaviors- and using language appropriately. While this may seem like what every parent of a 3 year old looks for- for us it is slightly different. Some days Robbie looks you in the eye and says " Mama, I did it" when referring to getting himself dressed- or "are you ok? and kisses his sister when she falls down and you feel a real sense of hope. Other days when he is totally focused on picking out 1 particular shape of bead and putting them in his backpack- 1 at a time for 3hours- and you can't get his attention- you feel despair.
When you have a stretch of good and very good days- your hopes and dreams of "curing" your child feel very real and within your grasp. When you have a stretch of bad and very bad days you feel your heart breaking. All you want is for your child to be happy and healthy. To learn, to have friends and be able to develop relationships- as other do. But on those bad days- you wonder. Will this ever stop being so hard? Will your heart ever stop aching for your child? I know the answer is probably no.

Walk with me in having an Autistic child

The following was sent to me by my good friend Nanette-

Walk with me in having a Autistic Child

Walk in my shoes
for one single day.
Then you'll see why
I need to pray.
Come live in my home
for a week or two
and then remember
I am just like you.
I didnt ask for the things I was given
I didnt choose this road I have taken
Walk a mile with me hand in hand
Then perhaps you will understand.
I'm not really complaining
about the stress in my life,
I know that we all have
some toil and some strife.
But walk with me, when you think
I am wrong, walk with me
and you'll start to belong.
Embrace my sorrows,
like they are your own,
And then you will know me
And see I have grown.

The journey I take
is different from yours
My life took one of those
unexpected detours,
But this road that I travel
is not really so long,
If the people who watch me
will join in my song.

Listen to my footsteps
and watch how I dance
And then you will know me
and give me a chance.

Take heart and remember
It can happen to you,
who knows where my pathway
will cross over to you?
So speak to me softly
if you can't understand
Remember I once stood
right there where you stand.
And walk with me gently
when the day is at end.
And then I will know
I can call you my friend.

Sally Meyer 1999