Yesterday I drove past a teenage boy, his hair cut in a Mohawk, walking with a Slurpee from Seven-11. If you didn't pay attention, you would miss these details- the muttering to himself, mild flapping of the hands. I pay extra close attention whenever I see him. He is Autistic. I feel conflicted when I see him. Happy that he is now independent enough to walk from his home, by himself, to Seven-11 to get a Slurpee and sad because I wonder- is he lonely? does he have any friends? Do others see him think he is a weird kid? Is that the only independence he has?

It's been way too long since my last post. So much has happened. First I want to thank my husbands cousins for the unbeliveable benefit they held for Robbie. The therapy that Robbie is recieveing is incredibly beneficial but costly and mostly out of pocket. The benefit- for the Hummel special needs trust - was awesome. A tremendous amount of family an friends were there and we felt very blessed for the support.
Additionally my sister ran the philadelphia marathon for Autism Speaks and raised a very large sum for the NJ chapter as well. She had a picture of Robbie on her back the entire race and we were all proudly waiting at the finish line. (Robbie LOVES his Aunt Suzie!)
We are seeing results. Slowly- but results. Speech is coming more easily and behavior is begininng to be more easily modified. Rob and I think the cause is a combination of things. Robbie is growing up. He will be 5 years old in March. School is challenging him. 9am to 3pm five days a week- with ABA, speech and OT all included. Two afternoons a week he recieves ABA at home for two hours- 3:30pm-5:30pm. One day he recives private OT from 8am-8:45am before school. Additionally we are continually working with him at home. As I have been explaining to various family members and friends- everything takes much longer for Robbie retain. The benefit is, at times, it feels more rewarding when he masters a task. We still have a lot of work to do. We still don't know if he will be that teenager walking to Seven-11 by himself. The reality is- that's not the worst thing in the world.
As Robert Frost said
The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep

Engaged

This week was tough. No school Tuesday, Thursday and Friday for teacher convention. An MRI scheduled for Monday only to be cancelled because after waiting for 3 hours my son drank some apple juice. Working on the no shoes and no coat rule that Robbie was enforcing. On Wednesday Robbie came home with a story the teacher had made for him discussing why and when we needs to wear a coat. Friday Rob spent most of the day preparing Robbie for life in the colder months. He had to put his shoes and coat on to go outside. If Robbie took either one off in the car- Rob pulled over and made him put them back on. It was a lengthy process- one that is not totally resolved- but definitely better.
This weekend on the other hand has been good. We had Rob's cousin and family over last night for dinner and a movie. Robbie hadn't seen his cousin's in a few months but definitely knew who they were when they walked in the door. The kids went into the playroom- Hannah age 10, Moira age 7, - Robbie and Lexi- to play. It was relatively quite. I snuck a few quick glances and everyone was playing together. For Robbie this means he is playing next to others but happy they are there. I can tell by the smile on his face and the sideways glances he takes every few seconds to ensure everyone is around him. As the night went on I was happy to see Robbie really trying to engage with cousins- especially Hannah. He came up to her a few times, looked her right in the eye and spoke. What came out of his mouth made no sense but it was encouraging to see the effort. When we put Toy Story 3 on for the kids all 4 sat on the couch. Robbie snuggled right next to his cousin. The nice about cousins is they are safe. They know Robbie's a little different than other kids and they are kind regardless. They have no idea how important that is for Robbie. Feeling safe and accepted will help him to use his words and play with others. It's nice to see a glimpse of progress- which we need to see every now and again!!

Halloween and Acceptance

I have learned an important lesson in the last few months. Autism rates are in fact rising however just about everyone these days is "on the spectrum". Rob and I continually meet people who have children "on the spectrum." What I have learned is every child is totally different and you really can't compare them. When Robbie was initially diagnosed with Autism there were 2 mothers in my area I spoke to - who also had "autistic" children. One of them claimed to heal her son through diet alone. This child at age 5 had told people his parents had unlocked the mystery of autism. Wow- that's impressive I thought. She sent us to a healer who suggested I boil almonds, peel them and make my own almond milk. She also suggested we take potatoes, tomatoes, eggplant and a few other items out of his diet. She sent us home with a few hundred dollars worth of pills, lotions, and supplements.
The other mother I had reached out to had a son in Robbie's pre-school class. This made me feel like I wasn't alone. This boy looks a lot like Robbie and they even had the same sneakers! They were sure to be great friends. As the months went by I learned this boy's diagnosis was different than Robbie's. He is labeled- Pervasive Developmental Disorder- Not otherwise specified- PDD-NOS. He received speech and OT outside of school and the ABA the school provided. He is doing really well and is still at Medford Lakes preschool. Why did this program work for this boy and not mine?? I beat myself up for a few weeks until I did a little more research on what different diagnosis mean. PDD-NOS is not as severe as Moderate Autism. And- many children have severe food allergies which may look like Autism- but it's not. This knowledge is helping me get through those times when I run into others who have children "on the spectrum" and those children are speaking, playing with other kids and in regular classrooms. Those children are doing really well. How is Robbie? He is doing well too. He is doing well based on his diagnosis. We are going to have to work harder and longer than those families have- and that's OK.
Halloween was a crazy weekend. School parties, friend parties and trick or treating. Robbie had a party at school on Friday. All the kids in Robbie's class dressed in costume except Robbie. The food was gluten free- however he came home with tons of candy. Sugar, red dye, preservatives- interesting I thought- but how can you deny your child candy on Halloween. At the end of the day I took Robbie to Lexi's Halloween parade. She spotted us- cried and that was the end of that. Saturday morning we had a local preschool party. Games, candy and chaos. Lexi put on her princess costume- again Robbie refused to wear his. Rob came up with a perfect solution. He bought transfer paper. You can put any logo you want from the internet and iron it on to a t-shirt. He found a scary peter pan and Robbie put it on. Saturday afternoon- evening we had another party at a friends house a few blocks away. Lexi put on her princess again and Robbie and Dad wore t-shirts with the Incredibles logo. (super hero movie) The party was tough. Robbie was overwhelmed by the people and chaos. He began some destructive behavior- throwing things etc. We redirected him to a sticker activity they had set up in the playroom. He seemed more content but took off his shoes and refused to put them back on. Lexi had a great time with the kids- running around and playing with toys. It made me a little jealous of other families who were there. Lexi was so easy. Is this how most kids are? I started to understand how my best friend with 3 kids can cart them everywhere with little trouble. We stayed for about 2 hours and decided to skip the Halloween parade and head home. It was exhausting.
The following day Robbie was still on strike with his shoes. At 4 o'clock we were planning on going to a friends house and trick or treating with them. At 3pm Rob and I decided that shoes are a non negotiable. Through tears, screams and kicks, we physically held him down and put on his shoes. He tried to take them off but Rob was vigilant. We all got into the car, a safe space for Robbie, and drove the 2 blocks to our friends house. We were pleasantly surprised. Robbie was happy, followed direction and kept his shoes on. We went trick or treating for about an hour with 2 other families. Robbie really seemed to enjoy it. And of course Lexi did too. Afterwards we returned to our friends' house for a bit. The kids played and ate a few treats. Rob actually said it was relaxing and I agreed. These situations are generally stressful so it was so nice to be able to breathe for an hour. The kids got tired and hungry so we decided to head home. A great way to end a crazy weekend!!

Good weekend/ Interesting Neurologist appointment

Last week was our biannual neurologist appointment. This time I came prepared with a list of questions and concerns that I wanted to address.
1) Robbie is 4 years old and has a indentation on the top of head- why?
2) What medications are available- what do they do and when do people use them?
3) What other testing can we do to rule out other things?
4) Do you see any changes/improvements in Robbie?

1) Robbie's head just formed that way. There aren't any soft spots- so the indentation is not abnormal.
2) Ritalin and Adderall are used when behavior gets in the way of learning. There is no correct age- just when/if you feel it's needed.
3) Testing- MRI- to look at the structure of the brain. EEG- to look for any abnormal or seizure activity. Blood work- for Genetic testing and Celiac panel.
4) Robbie is still in the middle of the spectrum. No change. If and when his verbal skills improve than he may as well.

Why did I have all of these questions? Robbie was diagnosed with Autism over a year ago. The diagnosis was made by observing him. No clinical testing has ever been done. I do think he is autistic but I can't rule out other possibilities on top of that. Robbie clenches his whole body at times- could that be a mild seizure? Robbie learns something and forgets something else. He learns nose but forgets ears or he learns potato and call ketchup- chocolate. He's known ketchup for months. Could there be an abnormality in his brain function, structure- etc. Robbie's stimming goes from being manageable to borderline out of control. How do we handle that? His teachers have said to allow it for a few minutes and redirect so he understands he can't continually stimm but let him get what he needs out of it. That is hard. Think of the people you've seen who shake, jump, flap, mumble, what did you think when you looked at them? When anyone says hello to Robbie I have to prompt him to respond. Robbie is at the age where people are noticing he is different. And of course different is not always bad- but also remember how cruel people- especially kids can be.

This weekend I took Robbie and Lexi with me to a local Halloween costume swap I was volunteering at. There were quite a few kids running around and I was a little worried about how Robbie would handle it. He had a blast. He ran around with the other kids- not exactly playing with them, but happy they were there too. It was so nice to see Robbie enjoying himself and of course Lexi was happy- she's the easy one. The kids were kind. They tried to include him and continued playing when he didn't respond to their requests. We were at a venue he has become familiar with so I know that helped as well. Later that evening we went to our neighbors for dinner. It was a struggle to get Robbie out of the house going in the right direction- he wanted to jump on the trampoline. This was a new place with some new people and a dog. He was out of sorts for most of the time and it was a bit challenging. A few people did not know us but knew there was something different about our son- they told my husband later after Robbie, Lexi and I went home. All in all- I felt it was a successful day. I know the next time we go to our neighbors house he will do much better. It was also nice to go through a day and do normal family activities. Some easier than others but still normal, nice, good stuff.
A lot of testing coming up. No medication yet. Lots of therapy and many more hugs and praise. Robbie is working really hard. His sister keeps telling him- "good job Robbie" for everything he does. He is doing a good job. The best that he can!!

The Struggle continues

I thought my "baby proofing" days were over. A few weeks ago Robbie climbed onto a desk - where our computer sits- in the playroom- and took the cord from the blind. He put it around his neck- 2 times. Rob and I were in the family room- right next door- Lexi dropped a puzzle- making a loud noise. Rob went in to check on them. He was scared when he saw Robbie- Robbie was startled- and jumped from the desk. Thankfully - Rob caught him and removed the string from his neck. It left a red mark but thankfully again- nothing that needed medical attention.
This was an incredibly frightening experience. Our outlets are covered, knives are put in high cabinets- but I would never have thought to watch for a blind that takes skill to climb to. Just to be clear- no worries of suicide. Robbie has been wrapping his arms, legs and mid section with string, color forms and anything he finds. It is a sensory processing issue. Now I am cutting strings out of shorts- and cutting tags off of shirts because those bother him as well. He can't be unattended.
The good is- school seems to be going well and all the extra ABA he received over the summer has helped as well. I took Robbie to Stride Rite for shoes- which has always been a nightmare. He picked out shoes - let them measure his foot- and wore his new shoes out of the store. ( He did pick the same shoes he was wearing in the bigger size- but we got out without a meltdown.) He is talking more- and we have been taught some skills to get him talking and to calm him down.
The bad is- stimming, stimming, stimming. The school OT has told us Robbie has low muscle tone in his hands and core. This may cause some of the stimming- flapping- akward movements. They are working on building those muscle groups. I have not considered medication, but I am willing to hear what our Neurologist has to say. It's like he is uncomfortable in his own skin. Pull-ups bother him- but he won't wear underwear or be naked to potty train. Heat bothers him- he won't go outside for recess if it's too hot. Possibly bright sunlight bothers him too- but he hasn't expressed that. He has told me his stomach hurts- more often than not lately. His diet has been relatively the same- so we're trying to figure out what to remove.
Lastly- I have met a lot of new people in the last 2 months due to a new job. When I mention I have an autistic son the response is often- is he mild or aspergers? The answer is no. Robbie is Autistic- moderate- according to his neurologist. The hot new diagnosis is being on the spectrum- for kids that nothing else seems to fit. Robbie is not just on the spectrum- he's in the middle. I am becoming more familiar with what that really means every day. Lexi is so far beyond her brother verbally at 2 years old. I didn't understand what the doctors meant by lack of imaginary play for Robbie until Lexi. I didn't understand what his challenges were until Lexi. So once again- 1 step forward- 2 steps back. And Hope :)

A new (school) year!!

Today was orientation day for Robbie and us (his parents.) Robbie held my hand while we entered the building. He is generally pretty independent but stayed close while we waited to go into his new classroom. Springville is much bigger than his previous school and probably a little intimidating. Daddy met us in the lobby (it was his first day back and we were lucky he was able to join us) and we proceeded to Robbie's new classroom. 3 other children and their parents entered along with the teacher and aid after aid. 5 aids, 1 teacher, speech therapist, occupational therapist, case manager and nurse were introduced today. I felt nervous and giddy at the same time. Robbie will (hopefully) finally get what he needs. 4 children and 6 adults ( more children may be added as the year progresses) what a fantastic ratio. 2 other boys, both verbal and 1 girl who is non verbal. These children had been students the year before and their parents were very pleased with their progress. Robbie was ushered down to the OT room with the other children and all 5 aids as his teacher gave us a basic run down of the day. 1 and 1/2 hours of ABA in the morning and afternoon, speech and OT, library, gym, and music- woven into free spots and lots of interactive instruction. I can barely contain my excitement while I type!!
I am prepared for a few rough mornings. The bus is coming tomorrow to pick him up and I'm sure it will be difficult. But I can not help but pray for the best. A good year. Some real tangible improvement. A bit less stress and a lot more hope. That's not too much to ask for, is it??

10 things I wish for

10 things that I wish you would accept, no questions asked- written by a 22 year old with Autism and 10 more things I hope you can understand- written by me

1) I can be surprising good at one thing ( remembering conversations precisely as they happened many years after the fact) and surprising bad at another (like keeping track of receipts or remembering the procedure for filling a prescription.)
2) Just because I have the words to type it does not mean I have the words to say it.
3) I really do hate to melt down, especially in public. If there was another way out I would always take it.
4) I never play stupid. If I ask a question or say I don't get it, it means I don't get it. Please don't make me feel dumber by saying that I'm faking it, just because it seems straight forward.
5) What may be slightly bothersome to you, like the waistband on a pair of pants, can cause me to be a witch all day... or at least until i change clothes! If I'm crabby, it's because something is physically uncomfortable in the sensory realm of things. Until that thing changes, I will continue to be crabby.
6) I can't control my excitement over cats. So if you mention cats or point out a cat realize that I'm going to get excited. Let me enjoy it. A little happiness never hurt anyone, eh?
7) I am often completely unaware of self injurious behaviors. I scratch, hit, bite, and pick often, and much more frequently when I'm agitated for some reason. In the moment I don't know that I'm doing it; if made aware it's so compulsive that I almost physically can't stop myself. But using my head, obviously i don't like the results of it.
8) I am exactly the same person inside regardless of how engaged ( or disengaged) I am with the environment and others in it. Yes, you might have to change some things based on how I'm reacting in the moment, but please continue to treat me like the person I am.
9) Engagement and happiness do not depend on one another! I can be just as happy off in my own world as I am fully engaged with you. However, a lot depends on you, here. If I'm disengaged and you're forcing me to "act normal" then no, I don't feel very happy. If you're interacting with me in a way that I can be in that moment then I can be as happy as I've ever been.
10) While autism does mean that I am absorbed within myself (aut means self, after all) , that doesn't mean that I don't want you around. If you can come to me, rather than forcing me out of my world to come to you, then I'd love to let you in. There's a whole world in here: maybe you should check it out.

There are so many reasons I love this. First of all- It helps me understand my son a little better. Additionally it gives me hope that Robbie will be able to express himself as this young woman has done. Lastly it has given me the courage to write my 10 things list.

1) When you see a child "tantrum" in public please do not assume it is a combination of bad parenting and a spoiled child.

2) Please be understanding of the limitations we face as we try to decipher what Robbie wants/needs. Please don't compare Robbie to other children his age.

3) While I understand the thought process- I do not believe in God only gives you what you can handle. Everything happens for a reason.

4) If you have a possible solution to a particular challenge we face- I'd love to hear it.

5) Don't be upset if i do not take your advice regarding the solution because there is a high probability we have tried it, researched it, and used it previously.

6) Things that work today may not work tomorrow. Our issue today may not be our issue tomorrow.

7) If I am defensive regarding my son- please don't hold it against me. I am often scared, sad and tired. I am trying to balance the expectation of a " normal" life for Robbie and the facts I have learned about Autism.

8) The rate of Autism is increasing. 1 in 70 boys are diagnosed. I do not know why. I have a hypothesis- but do not not know why.

9) I am not Jenny McCarthy, or any other celebrity who had the good fortune to "cure" their child. The reality is they have hundreds of thousands of dollars at their disposal and there is huge possibility those children were not truly autistic to begin with. They could have suffered from many other things.

10) I love my son more than my own life and would not trade him for anything in the world. Rob (Dad) and I are doing everything we can to ensure Robbie is loved and will be taken care of for as long as he should need.

A note from my Mother- to all Mothers of handicapped children

I received this via email from my mother today. It touched me in ways I can't express. I hope another mother of a special need child reads this and finds some comfort!

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint, Matthew, Forrest, Marjorie, daughter, patrons saint, Cecelia, Rudgledge, Carrie, twins, patron saint..... Give her Gerard...... He is used to profanity." Finally, He passes a name to an angel and smiles. "Give her a handicapped child." The Angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. Could I give a handicapped child to a mother who does not know laughter? That would be cruel." "But has she patience?" Asks the Angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She had to make it live in her world and it is not going to be easy." " But Lord, I don't think she even believes in you." God smiles, "No matter. I can fix that. This one is perfect. She has just enough selfishness." The Angel gasps, " Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize yet, but she is to be envied, She will never take for granted a "spoken word." She will never consider a "step" ordinary." When her child says "Momma" for the first time she will present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." " I will permit her to see clearly the things I see....... ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." And what about her patron saint? asks the Angel, with a pen poised in mid air. God smiles. " A mirror will suffice."

Summer is in full swing and Robbie is busy with "summer school" which consists of 2 hours of ABA and 30 minutes of speech or OT in the morning and 2 additional hours of ABA at home in the afternoons 3 days a week. As expected the home based therapy has been going really well- less distractions, and the school based programs have been touch and go. Lately the hardest behavior to handle is the hitting and kicking. Robbie does not like to hear no- as any child would. For Robbie- there are 3 strikes against him. He is a boy. He is a toddler. He is Autistic. For me the greatest challenge has become his size and strength. He is big for his age and very strong. This means- it hurts when he hits and kicks. The bruises on my legs and the shoe mark on my husband's back are the proof. The good thing is he is talking more and asking for more. However many times what he is asking for is not what he wants. Usually we can figure it out- but not always. Our ABA therapist had recommended we start collecting pictures of objects he may want. They use this in the classroom he will be attending in the fall. The reinforcement of the visual cue and verbal cue help. For example- sometimes he asks for a Popsicle but really wants a lollipop. He may ask for blue core ( from the movie Astro Boy) but means a Popsicle. However if you show him the Popsicles with out the box ( where the picture is) he may say no. It is frustrating for him and for us. We continue to work with him and add additional hours of ABA and silently pray for results.

What is Autism?

There is so much confusion about Autism. Autism is a complex neurobiological disorder that lasts throughout a person's life. It is sometimes called a developmental disability. The main signs and symptoms of Autism involve communication, social interaction and behavioral issues. Why is Autism such a difficult disorder? A child with Autism looks like every other child. They don't stand out like those with downs syndrome or some other disorders. When you have an Autistic child people really don't understand the challenges. Why is this perfect looking child having such a severe meltdown or not answering basic questions? It must be bad parenting, spoiled child, etc.

A child with Autism does not retain information as "normal" children do. Robbie needs continual prompts on basic every day skills. How to wash his hands. He knows how- but seems to forget the steps and looks for constant prompts and reinforcement. Potty training- he has repeatedly started off strong and then seems to loose it. He does not like to be wet but if he is not constantly reminded - will not sit on the potty- and then randomly will- without prompts. It is frustrating and makes me worry. The more I read about Autism and talk to other parents ( who are not millionaire celebrities) the more I realize how debilitating this disorder is.

We are in the process of setting up a trust for Robbie. What we haven't said out loud but I think of it everyday- the trust is for our son who may not be able to live independently- ever. We continue to make small advances in some ways and steps back in others. I am watching our daughter develop and she continues to amaze me. Her speech- many times in full sentences and her grasp of concepts. " Why is Robbie crying?" I have explained to my not yet 2 year old daughter that Robbie has trouble getting his words out and gets sad and frustrated. I never would have thought a child so young would comprehend that- but she does. And as she gets older I will continue to explain Autism the best I can. I'm still trying to figure it out myself.

How is Robbie??

How is Robbie doing? That is a question I hear a lot. Honestly it is hard to answer. Some days he knows most of his shapes and colors, other days he can only name 1 or 2. Some nights he sleeps really well, other nights he's awake half the night running up and down the hall way. Some days his communication is decent, other days he recites movie lines all day. My husband gets upset because he says I always have great highs or terrible lows to report to him. That is the way it is right now. We have highs - where I feel incredibly hopeful and the very next day- lows where I feel like the rug has been pulled out from underneath me.

We had an intake appointment at the NJ Department of Developmental Disabilities (DDD). After 6 months of sending in school files, doctor notes, etc- they decided to meet Robbie and assess his ability. ( really to ensure he is truly Autistic ) We arrived a few minutes early and played in the hallway. When were called into the room- there was a psychologist, social worker and nurse sitting at a long table. The psychologist was reading over Robbie's file and they all asked us questions. What differences do you notice between Robbie and his peers? I was a bit stumped by this question because at that moment Robbie was lying on the floor spinning in circles. I looked down at him and then at them and asked for more specifics. The one question that really struck hard was- can he ask for his basic needs? I have been thinking about that since we left. Not really. He is very independent and if hungry will get himself a snack. He does ask for "juice- apples" but I think I give it to him regularly as well. If we go to the lake he becomes so focused on the water he will not eat or drink anything until we're on our way home. The potty- well, we're working on that and making progress. We were told we'd get a call within the next week to let us know if we qualify. The DDD is a lifetime organization that will provide some additional services and information. It will also help him as an adult- should he need it. Needless to say- the phone rang the next day. "Robbie qualifies. You're son has serious behavioral problems." Not a comment you want to hear, but it is true. How is Robbie? We have a long road ahead.

HOPEFUL

Last week Rob and I (along with Robbie's case manager) were able to visit a school option for next year. It is a mile up the road from where Rob teaches - about 8 miles from our house. I went in with an open mind- and I was utterly impressed. I had been very nervous about looking at programs because I felt i didn't really know what I was looking for. My sister in law - who has a special needs child- had told me once you find the right program you'll know it. I think she was right. This school has 2 preschool rooms specifically for autistic students. A kindergarten for autistic students and a preschool handicapped as well as preschool inclusion. WOW! Their day is 9am- 3pm and based around ABA (Applied Behavior Analysis). There is an OT/Sensory room. A PT room. An Art room. A music room. A speech room- I could continue- but to give you an idea of where we are coming from- there is 1 room for almost all. The ratio was 8 children to 6 teachers and next year there will be 4 children in each class. Excited!! Hopeful!! Excited!! That is really all I can say. Many people have said it would have been great if we'd known about this program last year. Honestly, we would not have been ready to accept this is our son. The kids in this program ranged from completely non verbal and using smart boards to communicate to somewhat verbal. 2 boys left one classroom and were asked where they were going. They responded - "to speech." This was in the class where the all the kids were considered nonverbal. It makes me wonder where Robbie will fit. We think of him as verbal- extremely verbal- compared to what we "think" an autistic boy would be- but who knows what they'll see. Most of the kids had those jumpy, awkward movements that Robbie has. A year ago- I would not have seen it. Now- I look and think this is where my son belongs. He could strive here. He will not be the weird kid- they're all "weird kids." Hopefully he will feel comfortable and be pushed to achieve and find a friend or two. It's nice to feel we're moving in the right direction! Hopefully :)

Labels

Autism, ADHD, PPD-NOS, Asbergers syndrome- what???? There are so may labels these days and I'm not sure if they're good or bad. My fear is the misinformation. Will they outgrown it? NO - is it hereditary? NO research indicates so? Birth defect? - Research says no- but I'm not 100% convinced. They're weird? maybe.probably. They'll be fine.- - my response- define fine - as you would for your child.
I find myself brought to tears at the discussion of all these labels and how some children "must be this or that." Yes- they probably are- as well many others who fall somewhere in the middle. But really once again all I can think about is MY son. Where will he fall? will people be talking about him as he gets older? will he be the bad kid, the violent kid, the kid who has no friends.
I see Robbie playing around other kids- smiling, happy- but not engaging. I've seen other children put sand on his head or squirt water in his face- while their parents watch and do nothing and I want to scream. My son is enamoured by the water itself and doesn't even flinch. I find myself stepping in and telling kids not to do that to him. I am his voice because many times he can't find his. I guess right now that is what I want for my little boy. Find your voice Robbie! We ( Mommy, Daddy, Lexi) hear it sometimes- but no one else does. Find your voice and tell us what we can do to help you. The hardest part is hearing your 4 year old moan and whine because something is wrong- headache, tired, cramp, frustrated, hungry, etc.- but he can not tell you what it is. To the rest of the world he looks different, weird, etc. I am tired of explaining to others- " My son is autistic and this situation ( whatever it my be) is really difficult for him."

Walk Now for Autism Speaks

A few weeks ago we participated in a walk for Autism Speaks in Mount Laurel, NJ. We weren't sure what to expect but figured we'd give it a try. Rob coordinated fund raising through his high school's STARR club- students together for Autism Research. We had family members and friends come to support the event. The event was great. Although most of the kids were either much younger or much older than Robbie. I didn't see many his age- if so they were severe. Here's why. The day was HOT, crowded and very overwhelming. They had 2 moon bounces- which Robbie loves but would not get off so others could have a turn. There were games, bubbles, arts and crafts, etc., etc., etc. Lexi had a blast drawing with side walk chalk and blowing bubbles with Aunt Suzie until she saw Robbie melting down and then felt she should melt down too. " I do what my brother does." Rob did get Robbie to calm down while he was touring a real fire engine- what kid wouldn't love that! During the actual walk itself I took the kids back to the minivan for water and a movie to calm and cool Robbie down. In retrospect- it was too busy for him- but maybe next year will be better!!

For My Husband

I want to dedicate this entry to my husband. Marriage is tough, raising kids is hard, living through the ups and downs of the economy is no fun. But- I feel lucky to have married a man who is so strong and full of love for his family. The divorce rate for most marriages is somewhere around 50-60%- for those with Autistic children- it is closer to 80%. Many fathers can't handle the stress of having an Autistic child- especially a son. Men have dreams of enjoying sporting events with their son- maybe even fathering a pro athlete. When those dreams are shattered it is hard to handle. My husband coaches 3 sports. Basketball is his passion. Robbie can't handle going to the games. A friend of his,a fellow coach with an Autistic son, told him he couldn't take his son to his games until he was 13 years old. I am just starting to understand how difficult this is for my husband. Yesterday Lexi and I painted our toes. Silly analogy- but what if I couldn't enjoy those moments with my daughter? If I couldn't look forward to the special things mothers and daughters do together- however trivial.
Rob and I have recently come to terms with the fact that our lives are different than others and we have to make adjustments accordingly. Not to say different is always bad- it can be good- just different. We spend a lot of time discussing options for Robbie- what's working, what's not working, different approaches, services etc. I am thankful to have a partner who is engaged in the process. I can't imagine going through this alone. So honey if you read this- I love you- but please stop leaving wet towels on the bed!!!!!

Continue to wonder?????

We've had an interesting few weeks. Robbie has been sleeping better (knock on wood) and we're again restricting his diet. I had hoped to see improvement but it is still touch and go. He'll have a horrible day at school- not participate, cry, hide under the table but will come home and be pleasant and interactive. He struggles with naming colors in his ABA sessions but when we play candy land- he names them all immediately- even purple. I continue to work with him and give him lots of praise and affection. I just feel like I'm missing something. There is a piece of the puzzle that I can't grasp. He has so much knowledge in his head but it's locked in and only comes out on occasion.
We are participating in a walk benefiting Autism Speaks on Saturday. A lot of family and friends will be there. I hope I'm not an emotional mess. It is so bitter sweet to see others with a similar diagnosis. You compare and hope for the best yet fear the worst. All we can is work really hard and continue to love. What else is there?

The Bond Between Brother and Sister

I know most of my blogs have been pretty depressing. Here is a wonderful positive. The bond between siblings. Watching Robbie and Lexi interact has been and continues to be such a joy. She adores him- if that is a strong enough word- and he likes her as well. In the morning "Robbie- where's Robbie?, Robbie watch TV?, Robbie sleeping?" flow out of her mouth as I get her out of her crib. The minute Lexi sees Robbie- "Hi Robbie, Hi Robbie, Hi Robbie" will continue until he acknowledges her. It has become a good teaching tool for him. She will not stop until he says "hi Lexi". While I do have to remind him to say it- I'm confident it will come eventually because his sister is relentless. If he is sitting on the couch- she is right next to him. If comes to get a snack- she is right in front of him- usually pushing him out the way. If Robbie is napping on the couch Lexi will say " Sssssh, Robbie sleeping" and actually be quiet. Once in a while I do catch a glimpse of affection from him as well. Yesterday he turned a head lock into a hug-(progress) after she took what ever he was playing with. He does like it when she sits next to him or watches movies with him. He will laugh when she's chasing him and family dance party is hysterical. The two of them love to groove to the music. I'm glad they will always have each other because no one loves you, bugs you, and takes care of you like your siblings!!

Child Study Team Meeting and Parent Teacher Conference

Last week was a long week for us. Early in the week we met with Robbie's pre-school teacher. (She is wonderful and does the best she can given her class size and the amount of special needs children.) We were told that Robbie is just beginning parallel play. He has finally begun to sit for story time. He likes music. She doesn't feel like she is doing anything for him in this environment. Although we knew what she was telling us- it was still hard to hear. Robbie is so far behind and the preschool classroom is not meeting his needs. We had already sent an email to our case manager regarding our concerns about this year and our wishes to be placed out of district if they can not provide what he needs. Now we felt more prepared for our meeting with the child study team and the battle we knew we'd have.
The day before the meeting we gathered all our doctors notes and studies regarding the benefits of ABA therapy ( Applied Behavior Analysis). I looked at notes we'd taken from last year and was slightly panic stricken. The words and phrases Robbie had mastered last summer were either gone, replaced with similar ones or no progress had been made. While he has made some strides- all his reports state very slow progress- some regression.
As we entered the room to meet with the child study team- case manager, 2 pre-school teachers, speech therapist, occupational therapist and school psychologist- the room was very quite. The reality is these people had tried their best with the little amount of time they were allotted to give to Robbie and they all knew it wasn't working. It was not enough. It has been a constant battle to increase the amount of services even though we have doctors notes stating he needs 20 to 40 hours of ABA a week. He has been getting 6. The head of the child study team entered the room a few minutes later after we had begun to discuss our fears about the lack of progress. The tone of the room changed. It became so apparent that this individual is the problem in the child study team. She doesn't think ABA is effective. She moved the ABA program out of a separate room and placed it in the back of the classroom with a partition separating the ABA programs from the rest of the class (17 children- 9 of whom have special needs))After a long discussion about "creating a program" for Robbie , Rob and I were ready to object. Why recreate the wheel? There are programs designed for Autistic children. Why not find a program that has demonstrated success as opposed to throwing something together? After some debate it was agreed that he needs a program out of district- so now the search begins.
For the summer Rob stated the obvious to the head of the child study team- who we have been battling with all year. What you tried did not work. Now it's our turn to help our son. She gave in to our demands for summer school. 2 hours of individual ABA a day, 1/2 hour of speech and OT individually and 1/2 hour working together. finally the last 1/2 hour whatever his preschool teacher feels will be best. Music, Art, story time, snack- we're open. We're going to supplement at home with an additional few hours of ABA and speech.
As I look back at the past year I realize I really thought Robbie would "get better" or be "pulled through". I don't think I had a good grasp at how much he needs. During his first week of preschool last spring one of the aids asked if he used a weighted blanket. Rob and I discussed it that evening and felt he didn't need something like that. His problems weren't that severe. The boy in the class using the blanket also had a ball of play dough in his hand and an aid covering his ears. I thought- wow- thank god my son isn't that severe. (This year that same boy is in kindergarten and doing really well. He has a PDD pervasive developmental disorder diagnosis which is not as far on the spectrum as Autism.) A year later a weighted blanket was suggested by my sister in law- an OT. We have been using it for a few days and I can't believe the difference. He immediately calms down. I remember another mother telling me it will take a year to fully accept the diagnosis and the reality of it. I think she's right.

Continue with the ups and downs

We are continually struggling with ups and downs. Two days ago Robbie mastered "my name is Robbie". This was a huge win for us! Yesterday he wouldn't come out from under a table at school to do any of his programs. Up- down. Last night we had our parent teacher conference. It was depressing. His teacher is a wonderful person and she told us she is not doing anything for Robbie. His needs are greater than what the school is providing. We had sent a letter to the child study team last week asking to either significantly increase services for Robbie or place him out of district into a program that will meet his needs. Our meeting with them is Thursday- so we'll see. Right now we're just trying to keep it together.

The good, the bad and the ugly

The good news is Robbie's speech seems to be improving and he is mastering many of his tasks in ABA. The bad news is he has been out of control hyper. Sleep stopped last week and he went 6 nights with very little sleep. He would fall asleep at 8:30pm and wake up at midnight. From then on he was wired. Jumping on the bed, running down the hallway, talking about some movie he had in his head. Exhausting! Then he would fall back to sleep somewhere between 5am and 6am. ( we were late to school 2 days last week)
The other difficulty is the repeating of movie lines. Robbie can recite most of the movies we own. There are times when he gets lost in that world. His aid had trouble getting his attention this week because of this. So- what do we do- other than cry and pray- We decided to restrict his diet again. Gluten free, Casein free, sugar free. That began over the weekend. No improvement yet but I'm hopeful.
We're gearing up for our child study team meeting next week to discuss Robbie's summer program and next year. We're prepared to fight. He needs more than he's getting. He will loose a lot of what he's learned this year over the summer. As we read all the books written by celebrities who have pulled their children out of the Autistic spectrum I want to scream. ( If Lexi wasn't napping I probably would) They invest hundreds of thousands of dollars annually on services for their children. Rodney and Holly Robinson- Peete wrote a book stating they spent $160,000 a year for 4 + years to help their son. While that's wonderful it leaves me feeling even more helpless. What about the rest of us? I lost my job in December and we're biting our nails waiting to see if my husband has a job for next year. If our school district doesn't step up and help I fear the worst. So now I hope for the best and make sure to tell Robbie how much I love him every chance I get! He will repeat it back to me- and I know even though he is repeating what he hears he means it!

Engaged in Learning

Robbie and I have ramped up our "work". We've been reading a lot more books, working in preschool workbooks and naming as many things as possible. The down side is he gets really tired but the up side is he has become so engaged in learning. When we're reading I'll ask him what something is. He will proactively point to an object and say "this one?" That's his way of asking what an object is. When he sees the interactive preschool work book- complete with many pages of stickers, he is excited to get down to work. He has been tracing his letters and shorting items correctly. Once again these steps are small and his sister is rapidly catching up- almost passing him as far as vocabulary but that may be a good thing as well. She pushes him. I am just excited to see him excited about learning. :)

Sensory friendly movies

Today Robbie and I went our first "sensory friendly movie" sponsored by New Behavioral Network. The movie- How to train a dragon- was shown but not in 3D, the volume was lowered and the theatre was full of Autistic children, teens, adults and their families. It is a great idea because the kids are able to stand, speak and eat snacks their parents had provided. The reality is it's noisy and distracting because of this. The boy behind me was kicking my seat- his mother apologized. I looked at her and said " don't worry about it- really- we all get it." A few minutes later Robbie kicked the seat in front of him. I apologized to the man sitting there. He looked at me with the same genuine expression I had given the women sitting behind me. " don't worry- he's fine" he said. While it's nice to have these interactions with others who really do get it, I wondered if the movie was too distracting for Robbie. He's been to movies before and is usually pretty good. I ensure we get an empty aisle- usually on the side of the theater so he can get up and walk around. He sat for most of the show but did get a little over stimulated and decided to leave early. We got popcorn on the way out because "I want popcorn, I want popcorn, I want popcorn- etc" was all I heard as we passed the concession stand.
I called my husband on the way home because he is the only person who really understands what I'm about to write. This event was sad and depressing for me. I got a glimpse of what Robbie's life may be. A lot of the older kids seemed further on the spectrum than I would classify my son- but I may denying the truth a bit too. His progress is so slow that I am scared. Really scared. (To make matters worse as I try to quickly type this Robbie is pointing to the computer yelling "fish". He wants to play the backyardigans mermaid matching game on nickjr.com.) I saw all these parents today with a combination of love, exhaustion and sadness in there eyes. It was nice to have a place where compassion is truly there, but depressing to think of myself as one of these people. I know that sounds awful- but I have to have hope that my son will not be one of those teens who looked drugged or worse maybe, the one's that looked disheveled and were unable to control their tics and noises. The weird kids. Or the adult man in line behind me who came by himself but could not look anyone in the eye and was obviously uncomfortable. Or am I even more worried about the cashier at the ticket counter telling me "this showing is an "autism showing". That's why we're here was my response. If anyone has been watching Parenthood- my new favorite show on NBC Tuesday nights- one of the parents sums it up best. Her son was diagnosed aspergers. You worry all the time. Should you try something new? A new school? A new therapist? Should you stop something you're doing? Do you push, do you not push? And if you're not worrying about your autistic child -you worry about your other child? Am I not paying enough attention to her? Am I giving her what she needs? Is she picking up on some of the bad behaviors? Will she be ok - or feel like she was ignored like the daughter on the show does because so much of your energy goes into raising a special needs child. And then how can you carve out time for your marriage and not constantly talk about your fears for your children? Are you going to go crazy?
No- because you can't. Your family depends on it.

My " Soccer Monster"- or not

Robbie began his first day of soccer today. The group was made up of 6 children ages 3-5 years old. I spoke with the coach a few times prior to today. He seemed slightly uneasy but ok with having an autistic child in the program. I didn't really have a goal in mind before today- I just wanted to see how he handled the situation. I prepared him as best I could- explaining he was going to be a " soccer monster" today just like one his favorite Backyardigans episodes. I tired him and his sister out early at the lake so they would both nap and be refreshed prior to the 5 pm soccer lesson. As I pulled up to the park where the soccer was being held I knew my "preparation" would not have helped. The soccer is taking place in a small park with playground equipment and swings immediately in the vicinity. My friend who had mentioned soccer to me because her 4 year old really enjoyed it last year was also put off by the location. She mentioned that the playground was a definite distraction and last year it was held in an open field.
I watched all the children- with the exception of mine- follow every direction that was given. " sit on the ball like a chicken"- hands behind your back and kick the ball- drills- etc. The coach was clearly uncomfortable with my son. His assistant made a more valiant effort and I explained " My son is Autistic' - which I swear I will have tattooed to my body- ( sorry mom - but I will) and he may not answer to his name right away. If you get directly in his face and force eye contact he will respond. She said thank you for telling me. I was angry that the coach hadn't let her know. Robbie spent the majority of the soccer lesson on the swings- where he feels most comfortable. The coach did invite him in a few times but Robbie was adamant about what he wanted. The coach had told me prior to the class he would refund my money if it didn't work out. At the end of the class he mentioned that he thought I would call him for a refund.

This is what I Know- Robbie sat on the ball " like a chicken sits on an egg"- a few minutes after he was asked to and all the kids where already sitting. The coach gave Robbie a sticker with his name on it and asked him to put it on the front of his shirt. He did it- upside down- but he did it. 2 weeks ago at Robbie's class field trip the sticker with the name tag was a battle. 3 times- finally on his back so he didn't notice. These are small steps- but steps!!
My new goals for Robbie--- He will high five the coach when asked. He will participate in 1 drill. He will watch a portion of the time. The rest is up to him and really for him. If he wants to be on the swings 75% of the time- I'm ok with that. My husband and I had a discussion about this program a few weeks ago. His fear is that Robbie is not ready. I don't disagree with that. My fear is if we don't push him into situations that are tough he'll never be ready. It has taken months for Robbie to sit at circle time in his preschool class- but now he does it. As I told the coach- everything you teach to the other kids will take twice as long for Robbie to pick up. What I really need to tell him is- it's ok if he never picks up most of what you say. I want him to feel comfortable in a new environment and participate a fraction of the time. It he feels ok by the end of the season- next year he may truly benefit from it again. And if not- so what- we tried!!

The most challenging part of this experience is the coach and some of the other parents- ( with the exception of my friend who has been so helpful in these situations- Thank you Kelly if you read this!) They can see Robbie is different from the other kids and are not sure how to respond to him. I feel like I have a duty. My son is autistic- smart, funny, loving, athletic and beautiful- but still autistic. The way he is handled needs to be a little different. The number of diagnosed on the autism spectrum increases every day. 1 in 110 nationally- 1 in 94 in NJ- 1 in 54 in boys versus girls. What is going on? Someone PLEASE find a cure!!!!!!

SLOW progress

Robbie's had a few very busy weeks. He turned 4 years old, had a party, went to a party and had a school field trip. Robbie LOVES his birthday- or really birthday's in general. He had a blast opening presents with Mom, Dad and Lexi and waiting for his cake. He also had a blast at a friends birthday party. It was held at the Funplex- which I refer to as chuck e cheese on crack. He played in the foam frenzy room, rode bumper cars, ate cake and wanted to explore some of the other activities. I saw a parent from the daycare we used to go to. I mentioned Robbie was autistic. She had no idea.

The school field trip was a little more challenging. Garden State discovery museum was packed with multiple field trips. We did our best to get through the day- but honestly it was tough for a lot of the children. I did get to have a conversation with Robbie's preschool teacher. I explained that we feel next year Robbie should be in a full day program. She voiced a few concerns about her school and suggested I look into additional programs. So the search begins!

As the title of this entry states progress has been slow. He makes small gains and then regresses. It's very frustrating- especially as I watch his sister pick up words and phrases at lightning speed. Her vocabulary will out number his within the next few weeks. Simple things like throwing garbage in the trash can instead of the recycle bin. Lexi gets it but every day I have to remind Robbie which is which. The heart breaking part is I see him trying really hard. We play matching games on the computer and I make him name the objects. When he doesn't know the answer he looks at me- waiting for me to tell him. It's the same expression of emotion I remember from my school days. When the teacher called on me and I didn't know the answer or was not prepared. I'd look at them pleading for the answer.

So we continue on- searching for the "right" program. Trying to get more services. Teaching him basics at every opportunity. Hoping he will "outgrow" his diagnosis. Hugging him tight every chance we get :)

"Robbie has a best friend"

While we continue to have ups and downs as far as Robbie's progress is concerned- I have a great up to share. At school recently one of the other mom's told me Robbie was her son's best friend. It was awesome to hear- that he had made a real friend. Rob asked if Robbie knew he had a best friend. Truthfully- I wondered the same thing. I asked the other Mom if she wanted to arrange a play date for the boys. She was thrilled. Her son has a mild form of cerebral palsy, a speech delay, and ADHD. I wondered if Robbie would actually play with another child or play around them. To my delight he was excited when his friend arrived and after a few minutes really did play with him. They ran around the house, ran outside and played on our swing set. The little boys Mom was excited because he said Robbie so often and did not have many other words. They were both looking out of the "telescope" in the play house and Robbie put his hand around the other boys shoulder as they made up their adventure. They went down the slide and Robbie said "come on" to the other boy so he would follow him again. I could have cried. My son had such a big grin on his face all afternoon. He has a friend! :)

The Funplex- or Chuck E Cheese on crack

This past weekend Daddy and Lexi went to a friends birthday party and Robbie and i went to the Funplex. Robbie has been invited to a birthday party there in a few weeks and I wanted to see how he handled it. We walked in to a large room filled with people, noise, lights- pure chaos. I was nervous. I looked down at my little boy and a smile crept on his face. He was excited!! We meet some friends and proceeded to the bumper cars. Robbie's friend ran to get onto the children's bumper cars. Robbie was nervous and stayed with me. We watched for a bit and then he grabbed my hand and pointed to the larger bumper cars. These would fit an adult as well. we waited in line. He was just tall enough- thank you lord!! He picked a car. I drove. He had a blast!! Our friends who were watching could not believe the huge smile on his face as we got rammed by the other cars. (That seemed to be the best part.) When our turn was over- he got out and we walked back over to the kiddie cars. He still was not interested in going on them by himself or with his buddy. We went back into line and waited. He was so good waiting in line. I was proud! we took our turn- had a blast and went on the next activity- snack time! After having a snack- juice box and goldfish crackers- we proceeded to the next thing. It's called foam frenzy. Loud, loud, loud. A million foam balls are flying by your head. there are tons of shooters and a large structure in the middle that shoots ball out in all directions. (Robbie was in kid heaven- and adult hell)

The hard part of the day- the transition to leave. Robbie did not want to leave. He was having fun and honestly we hadn't stayed that long. But as life happens- we had to get home so Dad could scout a basketball game. I gave Robbie the 5 minute warning and the 1 more turn warning. Then I had to physically restrain him and carry him out. (no easy task these days- he's almost 4 years old and wearing 5-6 clothes- big boy!) I did get quite a few looks of horror and pity. But we made it outside, he calmed down and walked to the car on his own.

All in all - it was a great day. Robbie surprised me once again with his ability to handle " chuck E cheese on crack" and his ability to wait his turn. That is tough for any child. We are going to go one more time before the party- preferably on a weekday because Mommy feels overwhelmed on the weekends!!

Wish us luck!

Diet changes

We have kept Robbie on a very strict Gluten free, casein free (dairy), preservative free, artificial color free, high fructose corn syrup free diet for the last 8 months. We did this because after reading a lot of the literature- this course of action is suggested. We felt it was worth a try because it wouldn't hurt him- or his sister. Over the past few weeks Robbie had been helping himself to cheese, bagels, etc. The things that had been off limits. I've been watching closely and making sure he doesn't over eat those things. He seems fine. He doesn't have any bowel issues. His behavior is the same. In fact, I believe he is eating better- probably because things taste better and he feels satisfied. I am still limiting preservatives, colors and high fructose corn syrup but bread and cheese seem to be ok. I bought the deceptively delicious cookbook by Jessica Seinfeld. It tells you to puree vegetables and add them to foods- like mac n cheese and couscous. I tried the one of the recipes on Tuesday. "Yuck, this is gross." Most mothers would be upset by this statement. It was music to my ears. Robbie completed a sentence. Usually he would push the food away if he didn't want it.
He's had a good week in school , has been sleeping through the night, and hasn't asked for the pacifier as much. I hope this is a sign of more good things to come!!! ( And we can all eat Pizza again!!!!!!)

Birthday Parties

We all went to celebrate one of Robbie's cousin's first birthday. We were excited because it was family and Robbie usually does really well with family. As more and more people came to the party- Robbie began going upstairs for longer periods of time. He would stand at the stairwell and become focused on the ceiling-and his ability to touch it from the stairwell. He wanted to play upstairs in his cousin's room, away from the crowd. I wish I could say this wasn't heart breaking for us- but it was. We probably should have expected it- but we didn't. As I watched the other kids walk around and play with toys, I felt sad. My son was upstairs and refused to come down. It also becomes more and more clear how behind Robbie is when I see other "typical" children. I listen to them speak and ask for what they want. I watch them interact with each other so easily and I feel sad. I wish I didn't feel that way.
Another frustration has been with services and diet. How much, how long, what to avoid, what to add. No one can tell you what the correct amount is. It is a huge guessing game. When someone is ill, a doctor can recommend a treatment program or course of action. With Autism Spectrum disorder- the spectrum is so large- there isn't a clear path. I am frustrated. I am sad. I am scared for my little boy. He is making great strides- don't misunderstand. His speech is improving dramatically. His "playing" is appropriate. But, we still have a long way to go.

Temple Grandin

Temple Grandin is a "famous" person who is Autistic. HBO had a movie based on her life which aired tonight. Claire Danes was the actress and what an amazing job she did. Honestly I cried through the entire program. What this woman has accomplished is amazing. But what struck me were the subtle behaviors in Claire Danes "Temple." Watching her try to interact with others and even watching her eat- the very selective things she would. Why is Robbie so selective about what he will eat? Why does he eat 5 apples or 5 oranges at one time? Why does he prefer to sit underneath the table at our local restaurant once he has finished eating? How can we fully engage his extra ordinary senses and aid the ones that are overwhelming?

I feel very lucky that Robbie does not have sensory issues with being hugged and touched as "classic" autistic individuals seem to. He thrives on hugs, deep pressure and hot showers. temple had built herself a machine to administer "hugs" or deep pressure because she did not like to be touched. That must be heart breaking for a parent. The question that is looming in my mind is how much do we push to get him out of his comfort zone? We are working on things that are inappropriate. Holding onto my leg as we walk somewhere as opposed to holding my hand. But do we push for more social events? The birthday parties at chuck e cheese? I find those overwhelming.

I bring this up because "Temple" talks about how she was pushed out of her comfort zone. She was told to picture life as a series of doors and by walking through them you will find opportunities. Autistic individuals are incredibly visual. The door analogy is an excellent example of how to explain situations.

High Anxiety

I had an interesting conversation last night with the spouse of a friend who is in charge of the Autism programs in the Cambridge MA school system. The topic of anxiety came up. I've read and know from experience that autistic children suffer from high levels of anxiety. I had never really though to break it down into the simplest components. Why is Robbie freaking out when I turn off the Backyardigan's? Is it because he is not getting what he wants?- Sure- that is partly true, but it never occurred to me is he may feel like he will never be able to watch that TV show again. He may think he will never go to the park again or the playground again. If he is enjoying something, when we transition, there is real fear and anxiety.
I explained how Robbie is doing. The woman I was speaking with was very excited to hear he is verbal." That is a great sign "- she told me. "The fact that he can talk and is learning new words is great. He may end up with an Aspergers diagnosis." That thought had never crossed my mind. That is also not what I wanted to hear. He may end up with no diagnosis- I almost shouted. I know she was just trying to be helpful but for parents of Autistic children- the dream of Robbie being considered "normal" having friends, going to college, working and living independently, getting married and having his own family are the goals we strive for. Unrealistic? God I hope not.

A great day- thank you Robbie!!

The other day Robbie,Lexi and I were invited to Chick Fil A with 2 friends of mine and their boys- who are Robbie's age. There is an indoor playground at this restaurant where the kids can run around as mothers sit to have actual conversations! The idea sounded wonderful but I had a lot of anxiety over how we'd do in this situation. First- Robbie can't eat 90% of the menu- what if he saw what the other kids had and got upset? I checked the website and was pleasantly surprised to see waffle fries, fruit cups and juice boxes!! I packed our Gluten free chicken nuggets and organic ketchup and prayed for a meltdown free afternoon.
At the restaurant the kids ate lunch and then went into the play area. Robbie was able to run freely- and had a blast. While he did not play with the other boys- he did acknowledge other kids, made some eye contact and seemed very content. The worst part of these situations seem to be the transition home. Robbie generally has a hard time leaving places once we've gotten comfortable. However on this day- I said time to get your socks and shoes on so we can go home. To my surprise he sat down ready to do what I had asked. For those who don't have children on the spectrum- you're probably thinking all kids have trouble leaving the playground. Why is this such a big deal? Most kids will bargain for 1 more turn but do not have total meltdowns. These meltdowns are hard to control and I end up holding Robbie tightly to avoid getting hit or kicked. Then there is the screaming and crying. Other people stare at you like you are a bad parent who can't control your child. To have a peaceful end to the lunch date was all I wished for. It was wonderful!

Update

I haven't written on the blog in weeks. In part due to some changes in our family and because I don't want to "Jinx" how well things have been going. Robbie did very well over the holidays. He was very pleased to see all the presents under the tree and opened, not only his gifts, but all the gifts. This was a pleasant surprise for us because last year he didn't want to ripe the paper and cried "oh no" when we did. That is depressing as a parent. You get so excited to see your children's faces light up at the sight of the gifts.
The first week back to school was challenging as sleep became rare. He was up most of the night running back and forth in the hallway and talking very loudly. We put an air purifier in the room where he sleeps (ours). This device has a soothing white noise. It seems to have done the trick- I hope!! There is nothing worse than not sleeping. It affects your whole being- body, mood, soul!
Now we are plugging along and working hard. I am being trained in ABA therapy and am trying to instill it in everyday activities. It's interesting to me that Robbie will not sit down and "work" with me at home but we will with his dad, who is also working very hard with him. I am trying to get him out of the house to get him to focus and complete different tasks. (People at the library do look at us- but I try to keep it short)
My quote of the week for Robbie is "this is Awesome!" as he was eating corn for dinner- a favorite. One day at a time!!