Fear

I am afraid- very afraid. My sweet baby boy ..... is showing signs of autism.  The same signs that we missed with Robbie. The same signs that early intervention missed with Robbie. The same signs our pediatrician does not see.......yet?  Believe me when I say, I pray I am wrong.  Unfortunately my gut and my husbands says otherwise. What are the signs?  I am going to try  to post a link to an incredibly helpful autism program that shows the signs that are so often missed. I shed tears watching it, because I saw Robbie.  So- here it is from the Hummel house. Timmy is a very happy, pleasant baby. His eye contact is good- says the pediatrician.  The concerns are .... he moves a lot. His legs especially are going, going, going. He LOVES the jumpy swing that its in the doorway. His body gets tense very often. His focus gets lost. If I didn't know better I would think he was looking at me- my eyes- but really he is looking at my hair many times. It moves. He is affected by loud noises- very easily..  (Robbie was not/ is not affected by noise but it is a trait in many on the spectrum.)
Again, I hope and pray I am wrong. But fear that is not the case. The "correct" response to this challenge is to say " I know what I need to do"  " Been there done that"  and all of those responses are correct but here are a few others.  "What happens when I am gone or too old to care for my special needs children?" " I don't want to put that ..... whatever you may call it.... on Lexi." My hope was , she would have a sibling to be with her through any tough decisions that needed to be made regarding Robbie when I am gone. And yes the truth is I know what steps to take if Timmy is on the spectrum but the reality is, those steps suck. The process sucks. The sense of loss sucks. The realization that the dreams you had for your child are probably not going to happen.  Not the dreams of them playing professional sports, but  the dreams of them having a productive happy life filled with friends and a family of their own..  Worst post ever during such a happy time of year..............definitely.  And don't get me wrong. We are so excited for Christmas this year.  5 month. 5 years old and 7 years old are incredible ages for Santa. Believe me, it will be a magical year!! Pictures and videos for sure.  And again I hope and pray we are wrong or over cautious but I fear we are not.

Fullfilling potential...... and knowing when to laugh

Our biggest goal for Robbie- and all our kids- is to help them to reach their potential. Of course for a child on the spectrum this can be a little tricky.  One aspect has been trying many sports or activities to see if any "stick." Soccer, (twice), gymnastics, swimming, scooter riding..........some things Robbie has enjoyed and others, well... not so much. One of the toughest aspects of any activity for Robbie has been focus.
Karate has been an idea I had toyed with, but never followed through. There is a special needs Karate class that meets Tuesdays at 6:30 in Marlton. The dilemma has been other commitments- speech, ABA or social skills at that time and /or the drive to marlton. ( It's not that far but at that time with other children it presents an additional challenge. )
I decided to give karate a shot locally, in a regular class and let the chips fall where they may. Robbie and I met with the instructor for a brief one on one session to see if he was even remotely interested. I showed him a few images online to prepare him and off we went.  When Robbie walked into the facility his face lite up and he said "this is cool."  The instructor showed him where to put his shoes and a few basic moves. Robbie was 100% engaged and followed every direction. He wanted to look at the weapons that hung on the wall. The instructor told him he would show him when he was done. The session was short but as we left, with Karate attire in hand, Robbie said "that was awesome."    WHAT?  Two full sentences. Complete engagement. A happy kid.  What more could a parent ask for?
I knew going to a "real" class would present challenges, so our ABA therapist came with us. (Us being myself and all three kids- 4months, 5 years old  and 7 year old Robbie. )  I also emailed the instructor let him know we'd be coming and voice some concern about the amount of students, noise, etc. When we arrived we watched the younger class finish up. Robbie was excited- jumping up and down. The room was crowded and I hoped it would clear out a bit for the next class. No such luck. Robbie changed into his karate attire and went on the floor with about 15 other kids. While he did his best to follow instruction, he was really lost. The group did jumping jacks. Robbie managed two before he went into full spin mode. Spinning in circles, mild flapping and saying eeeeeeeeeeeeeeee. A very kind women sitting next to me leaned and said she three special needs children, all of whom took karate. My response was  "can you tell?" with a laugh.  The best part of the experience was the smile on Robbie's face. He did his best to follow the routine, pushing his aid aside. Clearly he wanted to be part of the class on his own. He got through about half of the class and said "all done. "  He changed back into his clothes and we watched the remainder of the class.
That was the first and last class he has participated in, so far. We have gone a few more times as Lexi is now interested and participates. I think the environment was too overwhelming for my boy.  Happily the owner agreed to do a few one on one sessions with Robbie to see if he can get him comfortable with the routine. I am very interested in seeing how it pans out.

Honestly I was feeling a little stressed out by the whole "class" scenario. I didn't want anyone to make fun of my son and I didn't want him to be a major distraction to the rest of the class.  However, looking back at the video made me laugh.  He is spinning, flapping, not following direction, but has a huge smile on his face the entire time. These are the situations that I have to laugh at. There will undoubtedly be a million more times like this, but sometime things will work out. Who knows- maybe it will be the next time!!Fingers crossed!!

The Drawbacks of Autism

I recently posted regarding the "benefits " of autism.  Here is the other side of the coin. After having a great day with Robbie at Chuck E Cheese, when asked what his favorite game was, he could not answer. The entire ride to and from consisted of Robbie scripting Monsters, Inc. and Monsters University. This means running the movie lines through his head and repeating what he could. If there is a part he can not speak the actual words, he will make up a phrase and continue until he knows the language. When we came home Robbie could not describe his experience in any way to the rest of his family. When Lexi came home that day from going to the movies with Dad she gave me the complete run down of the entire movie.  I spoke to his home therapist and her response was " recall is tough for these kids. After the event is over recalling specifics tends not to happen because- the event is over. He may not be able to recall events until he is a teenager."
Additionally while at Chuck E Cheese there was a bit of stimming behavior. Rob became obsessed with a Jurassic Park game. "Dinosaur game, Dinosaur game, Dinosaur game"  and then the jumping up and down, mild flapping and "EEEEEEE." There were other kids playing the dinosaur game at the time and one little girl- slightly younger than Robbie just stared at him. I don't think he noticed, but it made me sad for things to come.

Another challenge is never knowing what his behavior will like. If I expect he'll be fine in a situation, many times he is not and vice versa.  A friend of ours was having a large party a few months ago. I expressed concern over the amount of people, not knowing most of them and the lack of escape routes. ( The party was over an hour away.) He'll be fine , was her response.  I know that was meant to put me at ease- but the reality is he may not have been fine...............or he could have been.  Again I know many parents experience the same struggles with neuro-typical kids- however I believe the melt downs and "bad" behavior for those on the spectrum is more severe. I also know we as a family need to be more brave and challenge ourselves to be in these situations. However sometimes we just don't have the energy and want to stay home.

Behavior modification is also different. Robbie's teacher is out for the week and had put a behavior plan in his clip board. His home therapist brought it to my attention by asking if Robbie had displayed bad behaviors at school? While there have a few bad days , for the most part he has come home with good reports. Good was circled. That means he was good, right? I began to wonder if the standard of behavior is slightly different for those with Autism. My kindergartner gets a blue star for "good" behavior and the stars change color as bad behavior escalates. However for her, bad behavior is talking while the teacher is talking. (I am not making light of that, you should NOT talk over your teacher.)  For Robbie, bad behavior was defined as" rude, nasty or aggressive." Telling the teacher to leave, or repeating what they are saying. The standards seem a little different- because they have to be. Teachers and aids in Robbie's classroom  (kindergarten through grade 4) are regularly taught how to contain a child. I doubt that strategy is used very often in Lexi's kindergarten class.

I guess my point is this, things are just different. I hope that is not used as an excuse for bad behavior however I hope it is used for understanding in certain situations. So if you see a child jumping up and down, flapping, saying "EEEEEEE", don't be alarmed. Smile. Smile at that child and please smile at that child's parents. They really do appreciate it.:)

The Benefits of Autism

I hope those who know me- know the title- "The benefits of Autism" is tongue in cheek-and meant to be taken lightly.  Last night Rob and I were talking about the weekend and referred to it as a triple win.
1) Robbie got a haircut with minimal resistance! Everything takes time for Robbie. This has been an on going battle for us. Dad is still the only one who can cut his hair(-usually with a moderate amount of screaming, crying, running away, etc.)  The only  exception being a special needs hair dresser that goes into Robbie's classroom, occasionally. (Nice job Dad!!)

2) Robbie wore a long sleeve t-shirt  (again- nice job Dad!!) and a short sleeve t-shirt that was not white!! This has also been a battle. I can count on one hand the amount of times he has worn long sleeves this season so far.  Today not being one of them. Clothes in general are a difficult subject with Robbie- like many other kids. He will not wear jeans or any pants with snaps or buttons at the waist. This could be a sensory issue or could have began with stomach problems he has always had. He wears t-shirts, period.  Preferably white t-shirts- Nothing with a collar, or generally speaking, sleeves. It is actually something we are beginning to work on at home with his home based ABA therapist.

3) Robbie went to Chuck E Cheese and was fantastic! I assume most parents, like myself dread places like Chuck E Cheese, The FunPlex. etc. These places are especially difficult when you have a child on the spectrum. They are loud, bright, crowded- all things that many of these kids struggle with. Robbie was fantastic. He was well behaved. The anxiety that he struggles with made him stick close to me. He listened and followed directions. When it was time to go home- there was no debate or worse- meltdown. He had a great time - and I had a great time watching the smile on the face.

A little later at home Robbie took his shoes off and immediately put them in the closet (where we keep shoes.) If this were Lexi, I would ask multiple times for her to put the shoes away. Robbie knows everything has a place, and follows suit. This small task made me smile and comment- "a benefit of Autism." Even more than that is the joy over the "small" victories.  With any special needs child- the victories are even more special. Not to take away from our kindergartener who finally made it through a full week of school without tears. This was a great accomplishment for my very sensitive and emotional little girl ( who loves school by the way.) Or our 4 month old who slept 7 hours straight last night! Yeah Timmy!! But there is something so rewarding in watching your son who has struggled, and continues to, with some of the simplest tasks, overcome. Even if it is only for the weekend :)

Learning about Autism

Just as the title of this blog says- we are living and learning about autism spectrum disorder every day. I read the book "Why I Jump " recently which was written by an autistic teenager and found it really interesting. One of the topics discussed was the concept of time. Many with autism have a hard time with this concept. Robbie seems to have a lot of anxiety when it comes to time. For example I can't really prepare him for something that will happen next week or even tomorrow because that does not make sense to him. If I mention we will be going to Grandmom's next weekend, he thinks we're going today and does not stop asking- when are we going??????  It's different than his 5 year old sister who uses yesterday for almost all measures of time when speaking but fully understands the difference between last week ( a long time ago) last month ( a really long time ago) and tomorrow (in the future).
Another interesting thing I have discovered about Robbie is how he learns. Robbie loves movies. He has always obsessed over a few movies at a time- watching them many times over, as kids do. (I can remember my sister watching The Sound of Music and Eddie and The Cruisers- a zillion times as a kid.) The difference for Robbie is he has always mimicked the language or scripted the movie lines. This is very common for those on the spectrum as well. For Robbie however he has begun to take movie lines and use them in appropriate situations. Rob watched Paranorman with his Special Education class around Halloween. He asked if Robbie had seen it because so many of the phrases he has heard Robbie use. Robbie is such a visual learner- it only makes sense that he learns the appropriate use of language by watching it. He seems to try out phrases while we're in the car driving Lexi to school. He says them a few times- to perfect them. Later on he'll use them in the appropriate situation.   I find this so interesting- and of course it makes me feel a little better about the amount of movies he does watch.
He almost never eats vegetables, however as begun to eat broccoli. The reason- it is eaten in two of his favorite movies, (Mars Needs Moms and Ice Age Dawn of the Dinosaurs). He started reciting the movie lines while eating the broccoli- now he just eats the broccoli.
Our newest challenge- finding movies where a larger variety of vegetables are eaten!!!!Who knew?

Independence- the positives and negatives

The weekend before Halloween Robbie went for almost 48 hours without sleep- a new record.  The main reason for the lack of sleep was his tooth pain and massive amounts of candy. As I mentioned before Robbie requires dental surgery to fix some problems with his teeth-namely a large cavity. He will not sit in the dentist office. After months of fighting with my insurance company regarding their coverage of the anesthesia and hospital portion- it was finally approved. There is a mandate in the state of NJ that allows for those with special needs to get these services covered. It's funny that they finally mentioned this after I threatened legal action.
Finally Robbie had his dental work done. My husband and mother in law went with him and he was extraordinary. He did everything that was asked of him and the anesthesiologist actually said "He's really high functioning." This made Dad very happy. 
The moral of the story with Robbie is- you just never know. In situations where I am sure he'll be well behaved - he can be a nightmare and in situations where I'm positive he'll be a nightmare- an angel.
Yesterday morning our doorbell rang at 9am. Rob went to answer it and found our next door neighbor informing us he had retrieved our dog and put her in our fenced in backyard (which he does often) and by the way, Robbie was running down the street barefoot in  pajamas.  Rob and I looked at each other for a second. Rob had been helping Lexi get dressed so she could play outside and I was putting Timmy down for a nap. Rob ran out the door and the phone rang. Our friends two doors down letting me know Robbie was with them. He had knocked on the door and when they let him in he was very talkative and mildly agitated. This was the same place he ran off to the last time this happened over the summer.  Rob brought him home and sent him to his room. Then he went to the next door neighbors to thank them. I spoke to Robbie who was crying. I said "you scared us. We didn't know where you were. We love you and you scared us." His response" I scared you? Sorry." A few more tears and many hugs.
This is a pretty normal situation- I think. He's 7 and a half. He wanted to go to our friends house- a place we frequent and he enjoys. We were busy- so he went. Impulse control is of course an issue and  the lack of communicating to us where he was going- but as far as the situation itself- I get it. I think he gets it too- that we were scared.  Still, we will once again be double and triple locking the doors.
Our neighbor asked what we're going to do. Especially as he gets older. My thought was - why didn't you stop the child and leave the dog? The answer - I think- is one of the main reasons I write this blog. He probably was uncomfortable with Robbie- my Autistic son. I can't be upset by this- it happens. We all have seen special needs adults or children and may have felt a little uneasy. Not really understanding what their needs, issues, challenges are. Today every single one of us- will be touched by Autism, if you are not already. A sister, cousin, daughter, friend or coworker will have a child on the spectrum.
So- what are going to do as Robbie gets older? He is asserting independence. I don't think that is such an awful thing. He has left the house without telling us twice in the last 6 months. Both times going to a familiar place.  A place that is safe. Honestly- it could be so much worse. Maybe we will let him walk down on his own- watching of course.

The Little Boy Who Lost His Words

This is a children's story I wrote about 2 years ago. I am hoping to get it published one day. It is about the bond between a sister and a brother with special needs. Lexi doesn't realize it yet (she's only 5) but she is Robbie's biggest advocate and will continue to be as they grow up. She is the one who grabs his hand and leads him where he needs to go. She is also his voice, which can be bad as well as good. She knows her brother has Autism- but really, who cares? He's just Robbie, her brother.

                             The Adventures of Robbie and Lexi

                                  The Little boy who lost his words

Robbie was a boy who liked to talk. He would talk to his Mother, his father and little sister. He would even talk to his blanket, when no one else was around to listen. One day Robbie woke up from his nap feeling a little bit thirsty. “I would like some apple juice” he thought to himself. “I’ll go ask Mommy for some.” He came downstairs and saw Mommy in the kitchen making breakfast for his little sister, Lexi. “I want some Apple Juice please.” He tried to say. Nothing came out. He tried again. Nothing. He tried until his face got red and he got very tired. Mommy held him tight and asked what was wrong? He could not answer. He had lost his words. His sister asked “Robbie what’s wrong?” “I’ve lost my words” he tried to reply but nothing came out of his mouth. That night when Mommy tucked him into bed he could not sleep. Quietly he got out of bed. He grabbed the flashlight he always kept by his bed. At the end of the hall he saw a glimmer of light coming from the attic. “That’s strange.” he thought to himself. He got the tallest chair he could find and stood on his tippy toes to peer in the attic door. He’d never noticed it before, but there was another door. It looked old. He tried to open it, but it was locked. He peeked through the key hole and saw letters everywhere. They were on the walls and on the floor. Some were whole; others looked as if they’d been bitten in half. Then he heard loud snoring. It was a dragon the size of 100 Daddy’s. He had a bunch of letters in his arms. Robbie knew this dragon was the one who had stolen his words. He climbed out of the attic and went back to bed to think. When he woke up, he knew what had to do. Robbie had to find the key and unlock the door to the dragon’s den. Then he could get back the words that had been stolen from him. He began to look. He checked under his bed, he looked in his closet and in his drawers. No key! Just as he had finished looking, Mommy came into say good morning. “Robbie, what have you done to your room?” Mommy exclaimed. She did not look happy. “I have to find the key to the dragon’s den to get back my words” Robbie tried to say- but nothing would come out. “Do not come downstairs until your room is clean” Mommy said. Feeling frustrated Robbie cleaned his room and then went downstairs for breakfast. Mommy had made oatmeal for breakfast. Robbie didn’t feel like oatmeal. He wanted cinnamon raisin toast with butter. He tried to tell his Mommy. Again- no words would come out. He pushed the bowl of oatmeal away. It landed on the floor with a loud bang. Before Mommy could say a word Robbie ran upstairs to his room in tears. “I have to find that Key” he thought to himself. Just as he sat on his bed there was a soft knock on the door. It was his little sister. She came in, looked at him and said “where are your words? Did you lose them?” Robbie nodded. “Finally someone understands.” He thought . “I’ll help you find them.” Said his sister. Robbie nodded and they began to form a plan. That night after Mommy and Daddy had gone to sleep, Lexi quietly crept into Robbie’s room. She was wearing her favorite pink princess nightgown. It had always brought her luck. She had also brought her magic wand. This wand held magical powers and could help them fight the dragon to get back Robbie’s words. Robbie was waiting by his toy box. He also had a secret weapon-his blanket. This blanket had always kept him safe and he knew it would protect them. Robbie and Lexi began the journey into the Attic. They were scared but put on the bravest faces they had. When they came to the large door, Lexi said “I’ve got this” and pointed her wand at the rusty lock. Instantly it clicked and the door was opened. Robbie motioned for Lexi to stay behind him. First because he was bigger and second because he had his blanket in front of him. As they approached the dragon his eyes opened wide. He stood up and looked down at them, smoke coming out of nostrils. The dragon’s mouth opened. He had letters hanging from his teeth. Robbie held his blanket in front of himself and his sister. Fire roared out of the dragon’s mouth but the blanket ensured no one felt a single flame. Lexi pointed her wand at the dragon and exclaimed “Give my brother his words back, mean dragon.” Instantly all the words rose into a large pile and fell right on Robbie. At the same time the dragon began shrinking. Without the stolen words he had no power. He shrank to the size of a lizard. Robbie looked at Lexi and spoke- “Thanks Lex! Now let’s take this lizard out to the trash.” Robbie and Lexi, with the lizard in hand, left the attic and went downstairs. Quietly they opened the front door and set the lizard down on the ground. “Lizard, I hope you’ve learned your lesson. It’s not nice to take things that don’t belong to you.” Robbie said. With that they closed the door. Feeling very tired, Robbie and Lexi climbed back up the stairs and went back to their own beds. They both slept until late into the morning. The next morning Robbie and Lexi woke up feeling happy with their accomplishment. They went downstairs to see Mommy and Daddy. “Good morning Mommy, Good Morning Daddy.” Robbie said. ““Robbie, it sounds like you found your words!” said Mommy. “Look what I found this morning while I was taking out the trash” Daddy said while sitting at the table. He had a small box in front of him. “What? “both kids replied. “ A lizard. Why don’t we keep it for a pet?” Robbie and Lexi looked at each other and smiled. “No thanks” they said. “We’d rather get a dog.”

The Reason I Jump

Why? This has been an ongoing question for me concerning many of Robbie's behaviors. Why does he jump? When he saw a sticker with Chicken little on it last week , why couldn't he tell me who the character was? We've seen that movie 50 times- at least. Why will Robbie read at school but not at home? Why on Monday is much of the information that is considered "known" on Friday completely foreign? Why do movies resonate so much more than people? Why at 7 years old is the image of a guitar sometimes called a tiger? Why is Robbie "on" some days and completely "off" other? Why does Robbie run back and forth from the living room into the stairwell? Why does he throw himself onto the bed, get up and do it again, so many times I can not keep track? Why does he Jump? SO many whys? The same questions arise with behaviors. Why do some behaviors seem to begin, seemingly out of no where? Robbie gets into patterns of behaviors that are very difficult to break. For example he likes to take all pieces out of any games we have and put them in a large pile. He will take legos or blocks and shove them into his castle or batman house. If you try to move it- he gets upset. He has also begun to take everything out of his room. I came home from an outing, with Lexi two weeks ago, to find every ounce of clothing from his drawers and every object from his closet sitting in the playroom. Needless to say I was not happy. Not only because I had to clean up the mess that was made but because I remembered sitting in a seminar discussing Autism and behavior modification. There was a woman ,who I know from the sisterhood of Autism mothers, discussing how her son's bedroom had to be kept relatively bear. At night he would take everything out of his room and throw the items down the stairs. I can remember thinking- "that must suck." And here we are. The irony. Or the neurologist talking about medications for aggressive behavior and for those with Autism that are having a hard time with their disability- knowing they are different. Monday I went for a much needed run and came home to discover Robbie had hit his ABA therapist and Dad. Over the weekend he had hit me as well and has been yelling "shut up" at the top of his lungs in our ears. Monday he had a bad report from school indicating he was "talking back." Two weeks ago I said Robbie did not have aggressive behaviors. The irony. Don't misunderstand- I do not think that Robbie's behaviors are overly aggressive. I know much of the behavior is attention seeking. Robbie is testing us, as many 7 year olds do. Medication is not the answer for his behavior at this time. But, never say never I guess. (Medication for sleep is a whole different conversation.) The Reason I Jump; The Inner voice of a Thirteen Year Old Boy with Autism by Naoki Higashida with an introduction by David Mitchell is a book I have just discovered. The title and introduction drew me in immediately. David Mitchell is an author of fiction such as Cloud Atlas- made into a movie with Tom Hanks and Halle Berry. He also happens to have an autistic son. He writes of his experience getting the diagnosis. How it validates something was amiss. The sinking feeling that your life as a parent is going to be much tougher than anticipated. How so many had suggested boys are just slower than girls, so that must account for the delays. The newspaper clippings that are sent about the celebrities whose children are doing fine, how horse riding and shamans in Mongolia helped one boy, the diets, the programs that have shown success. He talks about "The books you read to learn more because up until now the closest you've come to autism is watching Rain Man or reading The Curious Incident of the Dog in the Night Time. Autism proves to be a sprawling, foggy and inconsistent field. Causes are unknown, though many careers are fuelled by educated guesses. Symptoms of Autism appear to be numerous. Some are recognizable in your own son, but just as many are not." Well said by David Mitchell so I had to quote him! I have begun to read the book and do find it interesting. A thirteen year old boy with Autism who uses a device and another person to help him communicate and has thoughts and feeling just as a non Autistic thirteen year old. I still have a bit more to get through and I'm sure it will spark additional blogs as my mind wanders into the world of Autism. Bottom line- it's all about ensuring a happy life for Robbie and helping him to reach his potential, whatever that may be!

And what brings you in?..........

I was supposed to go back to work 2 weeks earlier, however I took some vacation time. Most think it is because I can't bear to leave my sweet Timmy - ( maybe partly true) but really, Robbie had an appointment with a new neurologist and he had dental surgery rescheduled. The neurologist had been called in April to book an appointment. She is someone who was recommended by our Occupational therapist and is in network for us. ( A huge financial benefit.) The appointment had been moved twice and of course it was scheduled on a work day for me. The Dental surgery has been a huge headache. The dentist office has been wonderful. Our insurance company has not. They would not cover the hospital portion of the surgery- only the dental portion. Their reason- "he is not listed as Autistic, therefore it is not medically necessary." After 4 years of claiming benefits for Robbie- Occupational therapy, Speech therapy, Applied Behavior Analysis and social skills - Really???? After speaking with countless call center helpers- and getting a different response each time the dentist office finally got me in touch with a supervisor. The dentist had to submit documentation from our neurologist stating Robbie has Autism and the surgery is medically necessary. Crazy! So- this has been done and weeks later they still have not approved it. Postponed again and again. The neurologist appointment we did have. And what brings you in?- is how it always starts. I explained how we wanted to get back in network, she was recommended, and I have always felt there is something more going on with Robbie in addition to his autism. We discussed his scripting behavior- where he monologues movies until he perfects the pitch and tone of the lines he is reciting. The neurologist shared that her son has Aspergers. He thrived in his school theatre program. Not only did he know his lines, but the lines of everyone else. He could fill in for anyone and was a true asset. I got excited sharing my dream of Robbie finding a use for this incredible talent. Acting could be a way to use this skill in a constructive way! Quickly and gently - he is a different kid, she said. Not once- but twice - he is a different kid. My heart sunk, even knowing it was a stretch. At that point we began discussing the other issues that brought me in. Sleep (lack of) and Stimming. The same 2 reasons we have seen neurologists for the past 4 years. Lack of sleep has always been an issue for us. While it is better- there are still 2-3 nights a week where there is little to no sleep. Again the problem being Robbie is disruptive to the entire household ( loud, jumping, running, talking, yelling, hitting) and not safe enough to be left alone. (Locking him in his room has been suggested but we don't feel he would be safe during those episodes.) As the conversation progressed and medications were discussed I realized we have tried every class. Stimulants, Alpha Agonists, anti-anxiety, and seizure medications. The neurologist explained that only 2 medications are approved for Autism. They are used to treat aggression and irritability. These are not issues during our daily routine- at this time. She suggested a great tool kit found on the autism speaks website. It lists every medication, target behavior and side effect. ( Great source of information- www.autismspeaks.com Autism and Medication: safe and careful use tool kit) We decided to try an alpha agonist for sleep once again. We don't want to medicate our child unnecessarily. We don't want to lose him even more. However, as she stated- everyone is better off with a full night of sleep. We have a new baby, A kindergartener and we are tired. He is tired. She also touched on my notion that there may be more to Robbie than simply the Autism. The questions began- has he had blood work, seen a gastroenterologist, had an MRI, EEG- and so on. Yes, yes, yes and yes. "The spectrum is large and each child is different." The words stung a bit. My response - as always - I want to ensure Robbie is the best he can be. Her response - doesn't everyone want that for their child?.............. I like this doctor. She is " real"- and I think I am ready to hear it, maybe?

Things that make you go hmmmmm?

Every week I get emails from baby center regarding Timothy's development. Every month or so I get emails from baby center regarding my 5 year old and 7 year old respectively. Something I read in the email for a 2 month 1 week year old made me pause. It talked about overstimulation and how to tell if your newborn has had enough. In uteuro everything is quiet, muted and gentle. When they arrive - bright lights, barking dogs, phones ringing, siblings wanting to "play" etc.. can be overwhelming. Some of the signs of overstimulation are- closing eyes, turning away, tensing up, arching back, avoiding gaze and irritability. Sound familiar? These are the some of the same signs of overstimulation for bigger kids as well. We know we are living in a world of over stimulus. When we were children we were told, at times, to entertain ourselves. No computers, TV, or electronic devices of any kind. Just you and your doll or blocks etc. Today we are so busy with so many structured activities. There is little to no "down time or quiet time." My husband will attest I have fallen victim to this as well. You don't want your children to "miss out" on anything. But really - is it too much? On another note we had an exciting day yesterday. I have been talking about Halloween with the kids. Lexi picked her costume out months ago (Dorothy from the wizard of oz). For Robbie costumes have never gone over well. When he was younger I would struggle to get him wearing something- anything. This year we looked on a Halloween website and he picked out his costume. I was worried he would change his mind so we looked multiple times before I bought anything. And yes I spent way too much money on the final product- but his reaction was worth every penny. An astronaut was his costume of choice- complete with helmet. Very cool. It arrived yesterday and he put it on immediately- helmet and all. It is an itchy material, too big for him- but he loves it! Now that it was on him- getting him to take it off would be a challenge. However- after explaining he could not eat his beloved cheese balls wearing the costume, he took it off. The best part was when Dad got home from work. He pointed to the box and put the whole ensemble on. "Look at me. I'm an astronaut!" Music to our ears!!

vaccinations...............

Honestly, I am conflicted. To vaccinate or not to vaccinate- that is the question. OR to wait and stagger the shots. Robbie had over 25 vaccinations by the time he was 18 months, I feel that is excessive. With Lexi, beginning at 9 months, the vaccinations have been staggered. ( Just at the time Robbie was diagnosed.) She is just about up to date- with 2 additional 5 year old boosters she will need to get. It's funny that the pediatrician tries to scare you into getting all the shots at once by saying your child will not be allowed in school. This is NOT true. In the state of NJ there is a law regarding religious freedoms. Vaccinations fall under that category. If you give the school a letter stating this- your child does not have to be vaccinated. That being said- we did receive a note yesterday discussing a chicken pox outbreak in Lexi's class. The note said your child must have the varicella immunization. Interestingly enough, the child who came down with the chicken pox was vaccinated. I mentioned this to our pediatrician this week and was told children could still get the disease but it would be a milder version. I had the chicken pox growing up. It was something you wanted to get at a young age- so you didn't have to worry about it later in life. I am not saying I want my children to get the disease but they have been vaccinated and may get it anyway. Seems crazy. Same goes with the flu shot. Those just make me nervous. My parents get them every year and then many times get the flu. Possibly a different strain I am told- but still sick. The bigger question is- is there a link between vaccinations and Autism? There have been studies discussing the MMR vaccination and the Hepatitis B vaccination in particular. A newer theory has also possibly linked flu shots to Alzheimer's disease. Do I think there is a link? Yes I do. Don't misunderstand. I do not think vaccinations cause Autism, however I do think they play a role in how it presents. Just as I think food allergies have many of the same "symptoms" as Autism. Think about when we were growing up. We did not receive half of the shots children get now. In 1974 the CDC recommended 12 vaccinations by age 6. In 2013 it is up to 35 by the same age.If you never get sick how do you build immunities on your own? For younger children the theory is they either get sick from daycare- if they attend or get sick when they come to school for the first time. I am staggering vaccinations with Timmy- although I am not sure where to start. I have declined anything until he is 6 months old and will continue to decline the hepatitis B. I do believe in getting vaccinated for the "big name" diseases, but I don't think he needs to receive 6 vaccinations at his 2 month appointment. I am mentally prepared for the arguments I will get into every time I take him to the doctor, but I will admit it is draining to have to explain myself every single time. Now I know this is a hot topic. For my friends, who have made different choices regarding vaccinations, In no way am I saying you are wrong. This is the right choice for our family. Everyone has a right to their opinion. This is just me voicing mine.

A new year........

Here we are beginning a new school year. Many things have stayed the same. Transitioning from crocs and flip flops to sneakers has always been a struggle. While we have figured out what needs to be done- it is still difficult. We start about two weeks before school talking about sneakers. We ask Robbie to wear them. His response is a shrieking "no", running away, kicking and biting as you try to put the shoes on his feet. He will take them off a number of times and be as difficult as possible. We go through this drill ( or really Dad does as Robbie has gotten too big for me to physically manage) about three times and then it's over. He puts the sneakers on without incident. It will be a similar experience when he has to wear warmer clothes. Knowing what it will take does make it a little easier- but I can't lie- It's still extremely stressful. Robbie is in the same classroom- a self contained room with 8 other boys- all of whom have Autism. Additionally 5 aids, 1 teacher, speech therapy, occupational therapy.......etc. The kids range from kindergarten to 3rd grade. (Robbie is considered 2nd grade) Last night was back to school night and I learned a few things. My son can read! That was something I did not know and his teacher seemed surprised. He is excelling at math. That I did know. He has a group of friends that he is really interacting with. I am happy to hear that!!! While looking at the pictures of 8 smiling faces I noticed a change in the students from the prior year. One student who had been in the class the last 3 years was gone and another who had been in a different classroom took his place. The little boy that left was mainstreamed into first grade- with an aid. The little boy who is an addition to the class is completely non verbal and communicates with a device. I cried on the way home. Why? While I am so happy for the family of the boy who is mainstreamed, I am jealous. While I adore the little boy and his family , who was added to the class I am concerned about adding an additional nonverbal child to the mix. I am hoping to push Robbie this year. I am hoping other kids will push him to communicate more. I know he is not ready to be mainstreamed and have been told he never will be. And still, every year I hope and pray this will be the year. The year that he magically speaks in full articulate sentences that are meaningful and show his personality. The year that the autism will be gone. Yes I said it. And I know better. So that being said , hopefully some things will change..... or progress is a better word. I spoke with his teacher about helping Robbie be more engaged in our dinner conversations as a family. We always ask everyone what the best part of their day was. Everyone has a turn to explain. Lexi loves this, especially now that she is in kindergarten. Robbie struggles but seems to want to contribute to this family ritual. His teacher is sending home a paper with pictures of different activities he had completed through out the day. This will hopefully make it possible for Robbie to engage in the conversation. I mentioned to her- my biggest wish for Robbie is for him to have the ability to tell us about his day. What he did, who he played with, what he didn't like, etc. We will see how it works- fingers crossed!!

Our new addition ...Timothy

On July 27th we welcomed our newest addition- Timothy Joseph Hummel. He is beautiful ( says proud Mama!) While I am loving this perfect little baby, I feel a pit in my stomach. What if..... TJ was not a "planned " pregnancy. The reason we had decided not to have more children was because of the fear of Autism. I was tested for every possible outcome available while pregnant- downs syndrome, spinal cord issues, diabetes, and anything else they could test for. The only one I am really scared about is Autism- for which there is no test. Rob and I have had the genetic testing- we have no markers, neither does Robbie. Otherwise- there is no way to predict Autism- except to wait and see. The reality is Autism rates and higher in boys than girls and higher in families who already have an autistic child. As we look at this little boy it's hard not to see Robbie as an infant. They are brothers after all and TJ looks a lot like his brother did at this age. TJ also moves a lot. He moved in the womb and our pediatrician mentioned he moves a lot for his age now.( 2 weeks on Saturday) Many parents may think- that must mean he'll be a great athlete!! I can't seem to let my mind go in that direction- because it did once before. You have so many hopes and dreams for your children but when you receive the autism diagnosis- all those dreams of college scholarships, weddings, athletic achievements are taken from you. So , I am scared. My husband is scared. Our families are quietly scared. I have switched pediatricians' after becoming exhausted by the immunization debate. TJ will get some shots- but we are staggering them and some we are forgoing completely. We had Lexi on a similar schedule as well. And for those who ask- what about school? If you have a note stating - for religious reasons- your child has not been immunized, they are able to attend school. I am breast feeding- to the best of my ability. I will start him on organic foods when possible. Otherwise things are out of my hands. I am trying my best to be hopeful- so I don't fall apart completely and I keep thinking- "God only gives you what you can handle" Right?..............

Stimming...............................

While Robbie's language has increased, his stimming behaviors seem to have done the same. For over a week now the stims have been out of control. I say out of control because it seems they are out of control for him. His pupils are dilated and his eye color shifts to slightly gray. He wrings his hands, flaps, jumps up and down, repeats "eeeeee" and occasionally will get very tense throughout his body for a moment or two. We are constantly reassessing food diet, sensory diet, treatment, therapy, etc, etc. Right now I am stumped. We have been told by many therapists that teaching Robbie to self regulate these behaviors is very important, especially as he gets older. We are trying to teach him to stim in a safe place- his room. His room should be his quiet place to get it out. We also are teaching him that it is not socially appropriate. I have struggled with this, because these behaviors are hard for him to control. I have to think about the bigger picture as well. A cute 7 year old flapping his hands and saying "eeeeee" is almost ok. Imagine a 6 foot tall, 16 year old young man doing the same....... not so much. Here is an excerpt I took from the internet to explain what stimming means. It is a really good overview. What Is Stimming? Stimming is repetitive stereotypic behavior commonly found in autism, but also found in other developmental disabilities. This behavior may involve any or all of the senses in various degrees in different individuals. Several examples are listed below. Visual – staring at lights, blinking, gazing at fingers, lining up objects Auditory – tapping fingers, snapping fingers, grunting, humming Smell – smelling objects, sniffing people Taste – licking objects, placing objects in mouth Tactile – scratching, clapping, feeling objects nail biting, hair twisting, toe-walking Vestibular – rocking, spinning, jumping, pacing Proprioception – teeth grinding, pacing, jumping All of us engage in some of these behaviors occasionally, especially when we are stressed. However, your child may engage in these activities excessively so that they may interfere with learning or activities of daily living. Also, these behaviors may be embarrassing to you and others. Individuals engage in stimming as a way to self-regulate sensory input and manage sensory integration dysfunction. These behaviors may be excitatory (stimulating) or inhibitory (calming) with the result of normalizing sensations. Occupational therapy can help to reduce this unwanted behavior. A sensory diet should be initiated which provides your child with an appropriate amount and type of sensory input throughout the day to modulate their sensory experience. In other words, your child needs sensory meals and snacks periodically to meet their sensory needs before stimming becomes necessary. Often, deep pressure on the body provides needed proprioceptive inputs promoting calmness and security and lessening unwanted behaviors. This deep pressure can be provided by any or all of the following items. weighted blanket weighted lap pad weighted neck wrap weighted vest. The child should be taught to understand and regulate their own behavior. That's where we're at........

The best days of summer

We've had a pretty good summer so far. Great vacation with family in Massachusetts, went to see fireworks for the first time in year and caught fireflies with Dad and watched them light up in a jar. Lots of great summer memories for us and the kids. One thing we've noticed is the more swimming Robbie gets, the better off he seems to be. Better mood, less stimming behaviors, better sleep. That being said, there have been days where we go to the lake and then to a friends pool. The intention being- the more time in the water, the happier everyone is. Tomorrow extended school begins for Robbie and we know it will not be an easy morning. He will not want to get dressed (that early in the morning.) He will not want to wear sneakers- flip flops are the shoe of choice at the moment (mine too.) He will probably not want to take the bus. The benefit is- we know what we're in for and can begin to talk about it with him. The drawback- it's still really hard. I had a strange encounter with a man at Shop Rite this afternoon. I was loading my car with groceries as he was collecting carts to bring back inside the store. He began to speak to me about the heat, asking if I thought today was better than yesterday. I said I wasn't sure- it's still really hot. He spoke about the fact that he was probably getting used to it and that the night before he had woken up three times to take a cold shower because it was so bad. Then he paused for a moment- I assumed because of the heat, and asked if I had a child with Autism. ( Looking at the magnets on my car- it's a safe bet.) I replied "yes, my 7 year old son." He told me he had struggled with autism as a child. He had a hard time reading. He told me was ostracized as a child. School was very difficult for him. He was so articulate and looked me straight in the eye. There was no awkwardness or stimming behavior at all. Not sure how to respond I said "you seem to be doing well now." He told me his parents had spent a lot of money on the best educational programs and mentioned a reading program at university of Pennsylvania. He said they all worked very hard, but it was hard. Autism is hard. He has spent most of his life alone. I wished him well, again not knowing what to say. Now I can not get this man out of my mind. He is probably in his early 60's. He had many layers of clothes, which seemed odd with the heat. The clothes were not particularly clean, if you looked closely. He works at Shop Rite moving carts. He probably does not have air conditioning. He is alone. The most startling feature were his eyes. Very clear beautiful blue. The crystal blue Robbie's eyes are when he's on, or present. This could be my son one day. Where is she going with this post? I am suffering from pregnancy brain- as I like to call it. But also I have been talking to my husband about creating memories for our children- especially summer ones. Aren't summer memories everyone's favorite. I can't predict where Robbie will end up. I can and sometimes do make myself miserable thinking about the possibilities. What I can do is be present for him now. Take him for one more swim. Help him cope with the stress of change. Give him lots of hugs. This is the best way to prepare him for a future. I also will hope and pray that he does not spend most of his life alone. That he finds a friend or companion to share his life with. I wish I had said or done something else today to help this grown man with Autism........

Teaching opportunities

Like most parents, I find such joy in "teaching opportunities" with my children. The times where you feel what you are explaining to them will shape them as a person. Those "wow, I am a parent" moments. With Lexi, those times have been abundant. She is curious and extremely verbal- so questions come daily. However with Robbie , those moments are more rare. The other night I had one of those moments. I was putting Robbie to bed.( Usually either Rob or I lay with him and put something on the TV that we think he will find boring. He usually has had melatonin and falls asleep. ) On this night he was tired and I didn't feel he needed melatonin. We were laying in him room watching Extreme Weight Loss. The person featured was missing an arm. I missed the beginning of the program, but it looked as if he had been born that way. Robbie said "no hand, where's hand?" that progressed to "No arm. Look boo boo." While these words may not seem like much - especially for the average 7 year old, they were amazing to me. I explained that some people only have 1 arm or leg. People can be different. This boy does not hurt, he simply has 1 arm. We continued to talk about the boy and people in general. A real conversation!!! Robbie was engaged, asking appropriate questions, and listening intently to my response. I turned the TV off and he fell asleep. A beautiful night. ( Even if he did wake up at 3am).

Tired and Frustrated, again

The last two nights have been rough. Robbie has been extremely stimmy and not sleeping- which means I am not sleeping either. Wednesday he woke up and was whining a lot before school. Not a full cry, but he let me know he was not happy, with few real words. That day he came home with a bad report from school. He would not sit still for work and cried quite a bit. After going to the lake that afternoon, I was sure he'd have a good night, but watching him at dinner did raise a red flag. His eyes were dilated, hands were wringing , and he could not sit still. Wednesday night he woke up at 2am for the night. He complained of stomach pain. By 4am I put a movie on and gave him his IPAD, and then went to make coffee. Thursday he had a better report from school but was crying/whinning and looking for lots of attention when he came home. If asked "what is wrong, what hurts?" No response but a whine. Thursday night- same drill. Up around 2am for the night. Again complaining of stomach pain. He asked for tickles on his tummy- but it did not help. The frustration of Autism. His communication is once again limited. Something is obviously bothering him and he can't verbalize it. A similar situation happened last week at dinner. Rob and I were asking Lexi about her kindergarten testing. She was explaining the questions they had asked, name, address, alphabet, counting, etc. I asked Robbie how his day was and he started to cry. A real cry. How frustrating must it be to hear his 4 year old sister verbalize her day without any problems and he simply couldn't find the words. Makes me tear up thinking about it. As far as stomach pain- that is a common complaint. I have taken him to an allergist, gastroenterologist, neurologist (3),pediatrican, developmental pediatrician (2), and DAN ( Defeat Autism Now)doctor, natural medicine doctor (2) and have discussed problems with his gut with all. All tests have come back negative for celiac disease. He does have an allergy to dairy , eggs and soy, which we watch. But no one has a real answer. Frustrating. Hoping for a night filled with sleep!! Fingers double crossed!!

Good times

I am happy to write that we have had an incredible few days. 3 birthday parties- 2 of which Robbie was invited to and went- and SUCCESS!! The first party was at a lake near us that we never go to. One reason we have not spent time their is- Robbie generally freaks out when we pull in the lot, secondly- it is a little further away. I explained to Robbie where we were going in hopes that would ease his anxiety, but like many times, I'm not sure he even heard me. We packed up the car and headed over to Beach 3. As soon as I pulled in to park Robbie started screaming "No." The party was for a friend of Lexi's, and I knew she'd be heartbroken if we couldn't go, and I was on my own. So I made the decision to get out of the car and start walking. Robbie screamed a few more times but followed me. The minute we got there, the birthday girl said hi to both kids and gave them buckets with goggles and water shooters. Awesome!! That was it- he went straight to the water and had a great time for the next 4 hours. Success number 2 was another birthday party. I was pretty sure Robbie would be fine because it was at a friends house we've been to multiple times. And- they have a pool. The tough part can be the amount of kids and people that come to their parties. I've had to take him home other times because he just couldn't tolerate it. Rob suggested we park in back of their house- so we could avoid the initial crowd and go in by the pool. (Water- a favorite) The kids were in the water immediately and even as the pool became crowded- Robbie was all smiles!! About 2 hours in he told me he wanted clothes and was hungry. Easily solved. At cake time he did stay with the group for happy birthday but as soon ass the song ended looked out of sorts. I asked if he wanted to go back outside- as we were in a tight space with a lot of people. He said yes- I want to jump, and out we went. Success number 3 happened at our local lake- beach 1. Robbie was actually playing with another little boy. I have to give extra credit to this boy and of course Lexi who helped with the communication. Usually kids will come up to Robbie, try to start a conversation, get frustrated by the lack of response, and walk away. You can't blame them- but it hurts to watch. This boy- who is a little older, it turns out has Asperger's. According to his father he is different than most, he is very social. He looks for kids to play with and many times the kids his age don't want to play with him. Also painful to hear. Watching Robbie and this boy interact, talk, swim, and just be kids almost brought me to tears. It reinforces what I have thought all along, Robbie does want social interaction with other kids. He just struggles with how. Things I have learned about my son in the last 2 weeks most of which he has told me. 1) His prefers Blue over Green. I always thought green was his favorite color and would tell people if they asked- usually in front of him. 2) He thinks the new game I downloaded for him ,and his sister, is stupid. 3) He does not like to wear pull ups at night. This I totally understand but because he can't seem to fall asleep without melatonin- we have no choice at this point- unless I want to change sheets every night, at least once. 4) If you listen to him, he will tell you when he needs to spin, jump, needs water( swim, shower, etc.) 5) He is becoming very independent because he wants to be. Pouring his own drinks, wiping in the bathroom ( yeah!!) helping his sister with her seatbelt. While things can are still challenging, the more we understand our little puzzle (Robbie) the better things are becoming. I am so proud of the work he has done and continues to do. It's nice to post about situations that make me happy :)

Doctors and Dentists

The reality of Autism is even when gains are made- and they feel really big- they can seem small in the big picture. While Robbie has made gains in communication and language, there are still areas that we struggle in. While at the pediatrician this week I was told Robbie is physcially in great shape- but he stressed physcially. At 7 years old Robbie can not "read" the eye chart- or stand still long enough to follow the directions. He will not allow anyone to take his blood pressure- even though at every appointment (Neurologist, Gastroenterologist, pediatrician) someone tries. To give a shot he needs at least 2 people to hold him down, as he will kick and scream. He does not really have friends. That was a question I was surprised to be asked and sad to answer. Of all the doctors appointments- the dentist is the worst. Yes- no one likes the dentist but for most neurotypical children it is not that bad. Lexi will sit and allow them to clean her teeth knowing she'll get a new princess toothbrush and a toy at the end. Robbie screams and runs.(And his dentist is wonderful with him, as wonderful as she can be) She is patient and quick. This morning we had an emergency trip to the dentist due to a toothache he had been complaining about for 3 days. This morning was the worst. He tried to open the car door while driving, was kicking the seat and crying for his blankie and bear. It was difficult to calm him down. Once at the dentist he cried in the parking lot but seemed ok once he saw the toys in the waiting room. Then- it was our turn to go back. He followed the nurse- for about 2 seconds and then screamed and ran. ( The poor children in the waiting room) It took about 10 minutes of maneuvering from myself, the dentist and nurse to get Robbie in a room. I agreed that holding him tightly was the only way the dentist could get a peek at his teeth. Long story short, at least 1 cavity, 6 year molars coming in and a few other dental issues. Robbie will need to go to the hospital operating room and be put under anesthia for them to work on his teeth. I started crying. Partly because I am very pregnant and full of hormones, but mostly because of a situation that happened a few years ago. When Robbie was first diagnosed I worked in medical device. One of the hospitals I spent a lot of time at had a dental suite in the OR. I remember seeing patients wheeled in who were very unhappy and obviously special needs adults. The oral surgeon at the time very nonchalantly said most were autistic and my child would probably have to be put under for dental work as well. It was a tramatic time and a difficult thing to hear. Now - here we are and all I could think of was those patients- who seemed so much more severe than my son could possibly be. But- maybe not. The dentist misunderstood my tears and thought I had reservations about putting him under for dental work. I explained I know that is we need to do- it just makes me sad. It makes me sad that my son will need to go to the hosptial for dental work. It makes me sad my son does not have friends. It makes me sad my son still has a hard time communicating and it makes me sad that sometimes watching my son stimm and jerk and script movies cause people to stare or worse ignore him altogether. Sorry for such a depressing post- but some days Autism just makes me feel sad.

Another Doctors appointment

Yesterday Robbie and I went to the neurologist. Partly for a check up to keep his records current- yes he is still Autistic- and partly to discuss potential ADHD and anxiety. I am not thrilled with the NP we saw but in their defense I guess there is no miracle cure, pill etc- or someone would have found it. While he is hyperactive his teacher stressed how well he has been doing this year and that while he is hyper he does sit and focus for the tasks he needs to complete. We discussed the same medications we had tried and taken him off and ended up deciding that behavior modification was the best step at this point. We may try something new in the fall or next year- who knows. While waiting Robbie and I were playing in their "playroom". Another boy came in to see what we were doing. He was about 10 or 11 years old and spoke only to me. He asked what we were making ( star wars potato head) and then showed me a few pieces he had found in the toy bin. He left a few minutes later, but he got me thinking. I have struggled with trying to get a glimpse of Robbie's future. I was not familar with Autism before his diagnosis and have very little to compare him to. And- as his new therapist says- Take most of what you know and expect from an autistic child and throw it out the window with Robbie. The biggest heartache for me has been the unknown. For my husband- (forgive me Rob) I think the biggest heartache has been and is what he sees every day. He works with special needs teenagers- many of them on the autism spectrum. Some highly functioning and others..... not so much. He sees his biggest fear every day. Wow- that has to be to tough. Back to the boy I saw in the neurologist office. Previously I could not see Robbie reaching the social and communication level of this child. Today I can. This boy as I mentioned- only spoke to me- not to Robbie his "peer." That is common for children on the spectrum. Speaking to adults is easier for them. The good part is he was articulate and able to communicate. As Robbie got on the bus this morning he said "hi Guys!" to his bus driver and the aid. That is a first. It made me smile. :)

ANXIETY

Robbie's language has been exceptional over the last few weeks. He has been speaking in fuller sentences and answering questions- some of the time. Robbie frequently (every day) scripts movie lines. I have asked him- for years- what movie he is reciting. I have never gotten an answer until this weekend. He was asked on a few different occasions and each time answered with the movie title or character. Why is this such a big deal? This may help us turn his stimming behaviors into learning opportunites. If we understand what movie he is engrossed with- we can redirect more appropriately. For example- if Robbie is reciting lines from The Incredibles ( a favorite) than we may offer to draw superheros or robots. We may find the appropriate action figures and try to engage in imaginative play. It brings us into his world and allows us to bring him back to ours. Why is this piece titled Anxiety? The one constant has been Robbie's increasing anxiety. When asked to complete a task- getting dressed, especially trying on a new shirt, putting something away, washing hands, - there is an immediate "no" response, screaming, running away and you can see the anxiety in his body language. Once he calms down and we explain a few more times what we are asking- he usually complies. The fight or flight response in Robbie seems dramaticly heightened. This is a common thread in Autism. The question is - what do you do? Currently we are trying to slow things down and explain more thoroughly. We use picture prompts if available and also do light yoga and stretching. These tools help. Should medication be next? We had tried a few anti anxiety meds a few years back with little to no success. But that was a few years ago. I am reading a book titled "What color is monday? How Autism changed one family for the better" by Carrie Cariello. The author is a mother of 5 children, 1 being an autistic boy. She writes about the anxiety her son deals with and how medication has helped. There are many similarites between her experiences and ours. I Have scheduled 2 neurologist appointments to discuss options. I am hoping they will be able to guide us in the right direction- although so far they have no answers. Hopefully a little more trial and error and parents intuition will lead us in the right direction to help Robbie maintain a more peaceful existance. Wouldn't we all like that? A line stolen from "What color is Monday" - Because with life, with yoga, and especially with Jack, all I need to do is believe, breathe, and stay in the room.-

Gain and Loses

One of the frustrating realities of Autism is regression. Things will be going smoothly and than suddenly skills seem to be lost or situations you felt were controlled are again- out of control. Last weekend Robbie wanted to go to the lake. I told him we would have to go later because we were doing other things around the house at that time. Rob had also mentioned possibly going to our neighbors- 3 doors down at the end of our street. While the rest of our family and 2 members of our neighbors family were in our backyard, Robbie said" getting my coat." I didn't think much of it, as it was 70 degrees. A few minutes later the woman directly next door told us she had seen Robbie running down the street. Frantic, I jumped up thinking he must have gone to the lake. We screamed his name while running down the street. ( Robbie generally will not answer when his name is being called- but what else do you do?) The man at the next house said Robbie was seen going into the neighbors back yard. I found him walking into their back door. They are 3 houses down. Scary and depressing. It had been 2 years since Robbie had last escaped without us knowing. So- we go back to double locking all doors and I have spoken to our local borough office and local police. However, the opposite is also true. Things will be a bit bumpy and then- a huge burst of skills emerges. Last year at this time we were very frustrated and nervous about behavior and learning. This year- at the same time- things are improving. Robbie's speech and communication has dramaticly improved. It is not where it should be for a typical 7 year old- but the improvement is life changing. Robbie is able to tell us what he wants, needs, and feels. (most of the time ) While there are still times where Robbie is in his own world, he is "present" more of the time. Usually getting him off the bus means me saying " Hi Robbie, how was your day?" with no response from him, or the scripted answer "my day was good." While we are not getting him to tell us about the field trip he went on yesterday ( I had totally forgotten about) he is looking in my eye and saying "Hi Mommy." I can't express the joy I feel at such a small amount of self expression, acknowlegement, presence. It is , sorry to be repetitive, life changing. Not only for Robbie but for me as well. It gives me hope for his future. It also shows all the hard work Robbie is doing and we as a family continue to do is paying off. Small steps but hopefully BIG future!!

Would I remove Autism from Robbie?

I have read other blogs, books, articles, etc where parents of Autistic children write they would not change the fact that their child has Autism because it could change their child. They would let the child choose whether or not they had Autism- because it is that child's choice. While I respect others opinions- I disagree whole heartedly. Would I remove Autism from Robbie? Hell yes. For Robbie- Autism takes away from him. There are times where we see his personality (he is really funny), but the times come and go. He gets stuck in his own head- scripting movie lines or lost in his own thiughts. He can't focus for extended time periods- which make learning and playing more difficult. He gets overwhelmed by situations- especially if the situation is new. Certain foods affect him in ways they do not affect his sister or others. For these reasons I would remove Autism from Robbie. It would only allow him to be more present. It would make things easier for him. Currently we are learning to manage the Autism- so it does not manage him. Watching his diet, getting excercise, using visual tools to aid with stimming behaviors and of course giving lots of praise and hugs. I am proud of the work Robbie is doing and the person he is becoming. I just wish life was a little easier for him- isn't that what all parents wish for their child?

"Outgrowing Autism"

I had an OB/GYN appointment few weeks ago to find out the sex of our soon to be newest addition. After learning we'll be welcoming another boy I felt a bit overwhelmed with emotion. "what if?" Will he be a healthy neuro typical child or fall somewhere on the autism spectrum? Of course I have every test they can do to look for downs syndrome, spinabifida, genetic issues- etc. ( Rob, myself and Robbie had been tested for fragile x syndrome and few other possible genetic abnormalities - all came back normal.) The biggest concern- AUTISM- is the only thing there is no test for. I met with a Nurse practioner that I had not met during my prior pregnancies. She asked how I was feeling/doing- as they do at every visit. I expressed both excitment and fear over having another boy. She asked about Robbie- and how he doing. I explained his accomplishments and limitations, mentioning that as he gets older and more mature things do change and become easier- or more manageable. Her response was " Well, the data shows that children outgrow Autism." After taking a deep breathe, I tried as calmly as I could to respond. Some children, who are diagnosed very early on and begin therapy, or have autism like symptoms which are really food allergies, can do very well and seem to "grow out of autism." That is not the normal. That is not my son. The danger of her blanket statement is the potential to give parents wrong information. If a new parent thinks their child will simply "outgrow Autism" than why treat it at all? For a medical professional to be so uneducated about such a prevelant issue is scary and unacceptable! Another conversation my sister and I had also reminded me of the education that is needed. A friend of hers had asked why we spend so much money and time on therapy for Robbie- since he will never be "cured." Wow- was all I could say. But it made me think. The person asking was not cruel, simply uneducated. Our goal is help Robbie reach his potential- as all parents do. We simply have a different path than most. He needs extra help to ensure he can communicate effectively and regulate his sensory system on his own. We're starting with new therapists- as we do about every 2 years- to ensure Robbie's needs are being met. I am working on a facebook page to put all the information I can in one spot. I am writing a letter to this medical professional and will continue to talk and blog to anyone who will listen about Autism. One day the cause of Autism will be determined- and better treatments will be available- until then we keep on moving forward!!

2013 -A new year

I am frequently asked "How is Robbie doing?" That is such a difficult question to answer. I know most people would like to hear- "he's doing great!" But that is not our reality- and really what is great? Robbie is making progress. He is getting better at telling us his wants and needs- most of the time. Sleep patterns are improving- usually 5 nights of sleep and 2 nights awake. He does interact with family and occassionally close friends- if prompted. He does play with his sister- she gives him no choice. :) Here are the buts.... The stimming behaviors are almost constant. He rarely communicates without being prompted. He presents with many "typical" autistic behaviors. EX- He doesn't seem to distinguish the difference between objects and people. He refers to his toys as friends- and likes to draw happy faces on them to express his joy. He hugs boxes of his favorite cookies. While this sounds cute- think about what it really means? Can Robbie truly have meaningful relationships with people- other than his family? People are begining to look at him and know something is different. The worst part is when they pretend he not there. So- We continue to worry about what type of life Robbie will have long term. We've been told he will never be mainstreamed in school. He will probably not be able to live and function indepently. We love Robbie and will continue to support him and work with him to the best of our ability. He has a new little brother on the way. He has turned 7 years old. Summer is coming. It could always be worse, and we hope it will just continue to get better!