Yes Virginia, there is a Santa Claus

Christmas has always been a magical time for me. My parents (especially my Dad) still get excited over the holiday. We had many special traditions and  were very lucky that  Santa always came to visit.(I think he came until I was 29.) As an adult I still believe in the magic of Christmas. Rob and I were engaged on Christmas eve, many years ago. It is a time where most people reach out to catch up , at least with a picture or short note. A time to relive your childhood and believe in something pure. A time to give.
A week or so before Christmas I was in a hair salon and over heard a conversation between a few women. They were discussing how Santa only leaves 1 gift in their respective houses and they "the parents" leave many more. The reason being "Why should Santa get the credit? I am the one buying the gifts."  I understand many homes have various traditions. In many homes Santa brings the one big gift that had been requested. But as the season has come and gone I have heard many similar comments regarding getting the credit. Really?? I feel like shouting. My issue is feeling as if you have to get credit for the gifts. Could our society really have come to that conclusion. Give only for the credit?  Charity work is only worth it if you get something in return?  And what about the magic of Christmas for your children?
There is no monetary value for the look on Robbie and Lexi's face when they look down from the top of the stairs and see  presents for them under the tree. And nothing will beat my husband, who has in the past been very stressed out this time of year due to his grueling basketball schedule, getting so excited to decorate the tree with candy canes ( our newest tradition) and put the gifts under the tree. The reward- seeing the excitement on our childrens' faces, knowing Santa had come.
How does this tie in with Autism?  I saw a facebook posting today from Autism awareness. It said "People with Autism do not lie, do not cheat, do not play mind games." A parent of a student my husband taught recently said "Many with Autism are just pure, unspoiled." This of course can be tough as our children on spectrum grow into teenagers and adults, but as children they will believe longer.  And so again- yes Virginia, there is a Santa Claus- at least in the Hummel house for many more years to come, (I hope)

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.