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.