This is going to be GREAT............................................

And so it begins, just like every other time. I am so excited because I've found an activity I know Robbie will enjoy. It is for special needs children. They will be patient with us. I am excited. I am prepared. This is going to be great.......................................
Robbie comes home from school and I tell him he is going to go swimming. He is excited. He puts on his bathing suit. We get packed up. We drop his sister off with Dad at lacrosse practice so it will just be myself and the 2 boys. We're on our way. Robbie is excited. He talks about swimming. He mentions the animals we are passing as we drive through farm land to get to the Pemberton campus of BCC.  He is "on"  today. He is present. This is going to be great. We pull into the campus. To me it looks a bit run down but Robbie says "it's beautiful." We finally find the sports building. He gets out of the car. "Come on Mommy, Come on!" Robbie yells as I unload the stroller, sleeping baby and the large bag filled with the appropriate items needed for this endeavor. We make our way into the building and ask where the pool is. We are directed through the women's locker room to the pool. As we enter a wave of heat hits us. It is hot in the pool area. I look at Robbie- he doesn't seem to mind. The pool is huge. Robbie is smiling. We're a little early for the 5:30 special Olympics swim team practice. I see a mother and son on the bleachers. The boy is slightly older than Robbie and playing with an Ipad. I know he is part of the team. His mother asks her son to introduce himself to Robbie. He does and asks Robbie what his name is. Robbie does not respond- which is common when he is asked a question. I reply" his name is Robbie" to which the boy says, " I wasn't talking to you, I was talking to him." Oh yes- he is on the spectrum and that makes me smile. "You're right." I reply. "Do you want a turn on my Ipad? " the boys asks Robbie.  I explain to Robbie that he needs to answer questions when someone asks him. He is not paying attention to me. He is looking around the room and looking at that pool. I tell him we have to wait. Waiting is hard- as Daniel tiger says on the PBS kids show that Lexi loves to watch. Yes- waiting is hard.  The coach is in the pool giving private swim lessons to the brothers of the boy we had just been talking to. She acknowledges us and tells us to wait where we are. Robbie is sitting on the floor by the pool so I tell him he can dip his feet in. She tells him he needs to sit on the bleachers. I feel badly because I had thought he was ok were he was. Unhappy, he returns to where I am sitting. He says he needs to go to the bathroom and walks towards the ladies locker room, where we had come in. The other boy yells "hey you can't go into the girls room." Robbie is embarrassed, I think. I usher him to other side of the bleachers to the men's locker room. When he returns to the bleachers the life guard asks for Robbie's shoe size for flippers. I am thinking- No way will he put them on.  To my surprise , he does put them on- even though they are pink. We find his goggles, so he is prepared. We wait.  The coach tells the kids to bring their flippers and goggles to the other side of the pool. Robbie refuses. She comes up to him and asks if he would like to swim. He says no. Her assistant says "come on buddy, let's go". He says no. He yells no swimming in the nool. yes I wrote nool. I hug him and quietly say "Robbie , it is a pool. Don't you want to swim?"  "No , no swimming in the pool mommy. " I decide if we watch the session, maybe he will feel more comfortable. He sits on the floor. He inches his way closer to the water. He decides he wants to go over the team and see what they are doing- if I come with him. He picks up his flippers and I grab the goggles and we're off. Timmy is sitting in a onesie in the stroller because it is so hot his face is beat red. I keep an eye on him and walk with Robbie. We get his flippers and goggles on and just as he's about to get into the water I notice Timmy slipping down in the stroller. I walk back toward him because I don't know any of the parents well enough to ask for help. Robbie sees me walk away and tries to run after me with his flippers on. The coach , then yells "Mom, he can't run in flippers." Both things set him off and I know it's over.  I grab Timmy and come back over to Robbie. I make him sit with me close to where the team is practicing. They swim laps. They do the crawl, breast stroke, back stroke. It is beautiful. 5 boys, 4 on the spectrum. 1 with downs syndrome, who comes over to Timmy, looks him in the face says "what's up little dude?" to which I burst out laughing. These boys are happy. They are listening to the coach and her 2 assistants. They are swimming. Robbie is not happy or swimming. He leaves the flippers and goggles and walks back to the other side of the pool, where the stroller and our pile of stuff is. I follow. We sit for a bit longer, but now he is pulling at his bathing suit asking to take it off. His butt showing , more than once. I realize it is time to give up. I was told at the end of the 45 minutes session they get 15 minutes of free swim and I had hopped that would entice him into the water. The water is his happy place. It always has been.
We go into the dressing room and he changes.  We thank the coach and she I decide to talk later to come up with a plan to help Robbie feel more comfortable. On the way out I notice a large flat screen television showing the pool mounted to the wall. I show Robbie who says "It's beautiful."
I ask him if he wants to come back and he replies "No mommy. I don't want to come back. No come back, no come back. Robbie's house. Watch Despicable Me." This is repeated 10 more times.
I am going to try private swim lessons with the coach to see if that helps ease the anxiety. At least that way he gets to swim. I am hopeful it will, but you never know.
 So Again, I wonder. Is it worth the struggle? Does it make Robbie happy or cause undue anxiety? Is getting Robbie involved in an activity really about Robbie or is it about me?  Maybe it is me, wanting Robbie to have something, so I have something with Robbie. Maybe it's me wanting to be a parent sitting on the sidelines, proudly watching their child , with the other parents who are doing the same. We've tried basketball, soccer, gymnastics, yoga, bowling, horse back riding, karate, swimming, all special needs programs. Should I give it a rest? Maybe I will, after we try that track and field program that begins in late April I've heard so much about....................................

Parenthood, the TV series

I refer to the television series Parenthood in many of my blogs. I love the show, but it also pulls at my heart strings in ways other programs can't. My sister in law warned me to have tissues ready for this last episode- which I DVR'd because 10pm is way too late for this mommy.  The issue this family faces is their son beginning to understand he is different from the other kids. He has Aspberger's and is in that preteen stage where life becomes more complicated. The other kids are making fun of him and in this episode he explains that one urinated in his canteen on a class trip and called him a freak. He tells his parents that all the kids hate him and laugh at him- even the nice ones- and he doesn't understand why.  As tears stream down my face I  of course , think of Robbie. Right now we are in a good place. Robbie is 8. He is in a self contained classroom with other kids that are similar to him. He does not have any interest in team sports or after school activities like his Nero-typical peers. he has a schedule and he follows it. School, ABA at home, social skills and the occasional trial of an additional activity. Today we will be going to the Special Olympics swim team to see how it goes. (Fingers crossed)
For those children who are higher functioning on the spectrum, life can be incredibly hard.  Kids are mean. We've all been though some sort of teasing or bullying at least once in our lives. As a parent, there is nothing harder than watching your child suffer.
This episode also got me thinking about Robbie and our battle to keep him in his current school. At least there- he is with those who are similar to him. If he returns to our home district, he will be the only one. Yes there are other special needs children and others on the spectrum, but none who are as severe as Robbie. Our home school spoke about integrating him with the regular kids for specials- as they have limited resources- and it would "benefit" Robbie. My question is would it? Would he be the target of bullying or teasing? As he walked down the halls saying "eeeeeeeeeee" and wringing or flapping his hands, what would other kids do? As he continues to grow and does become more aware of his differences, how would being the only one help? My hope for Robbie long term is for him to develop friendships. Even one. Some support system other than his family.  Whether or not this will happen, who knows. I know I am dreading adolescence and all that goes along with it. Once again, we are lucky. On Parenthood the boy , Max, does not like touch or hugs. Our little boy can't seem to get enough hugs some days. So again, I hold him tight and tell him " I will always hug you, I will always kiss you, I will always love you" at least as long as I'm allowed!!

What about the children who don't have a specific diagnosis?

As I sit writing this, Robbie is in the room with me. He is bouncing in his seat, wringing and flapping his hands, concentrating very hard on the "girls human Lego" , his sister has been building. He is also pretending to "hurt feet" as he plays with the chair and places it on his feet (lightly). The whole time he is scripting movie lines. He jumps from movie to movie. He gets up- spins in circles and sits back down. His last few reports home from school have said he is "very antsy."
Since it's March and we have been stuck inside for months- this is no surprise.  He has moderate Autism, Dyspraxia and is very sensory based. We know this. We have been through this. We know how to handle this.  At least right now, we know what he needs.
I remember when it was decided Robbie would be placed out of district. Rob and I went to look at the program Robbie eventually ended up in. I have to admit, it was scary. There were children who used devices to communicate. Some did awkward things with their hands, ( wringing and flapping.) Some spoke to themselves- (scripting- as I now know it.) They all had a paraprofessional or aide next to them. I was sad. I was also unsure if it was the "right" place for Robbie. Thankfully Robbie has a Dad who is a special education teacher. A Dad who cried right away when Robbie was diagnosed because he fully understood what moderate Autism means.  A Dad who knew this was the place for him.  A Dad who knew the research showed we needed to act now- with intensity.  We were lucky. Robbie has a specific diagnosis that allows  him to get services he needs and a Dad who knows about special needs. (And a Mom who is learning along the way.) No- it is still not easy. There are a lot of things we don't do because honestly- they are too hard and stressful for Robbie and the rest of his family. Of course it will only continue to become more challenging as Robbie approaches (gasp) "the teen years." But  that is a whole different topic.
What about the children who don't have a specific diagnosis? A (somewhat) specific road map. Parents who are doing their best to figure out where their child fits in- but there is no one to tell them. Honestly, because no one really knows. Autism, PDD-NOS ( Pervasive Developmental Disorder- Not Otherwise Specified),  Asperger syndrome, Apraxia, Dyspraxia, OCD, ADD, ADHD, Dyslexia, Auditory processing disorder, MD ( multiply disabled), LD (learning disabled),  and/or Developmental delays. I am sure there are more I am missing. How can a parent, who has a child with multiple diagnosis, know where to go? This is the segment of education that is lacking. Honestly though - it's hard to place blame anywhere. How is our school system supposed to keep up? There are so many different unique needs. There is never enough money.  Today is so different than it was 10, 20 or 30 years ago.
Once again- a reference to my favorite television program - Parenthood. The parents of Max- a pre teen with Asperger syndrome decide to start their own school, because they are not satisfied with the options for their son. How amazing - and (financially) fortunate they must be. If only we were all so lucky! For now there is just so much to learn. Hopefully it can be done fast enough, well enough - more than enough. That's what these children and families- need and deserve. A fair shot at helping their child to reach his or her potential- whatever that may be.

The Power of Siblings

This post is dedicated to my siblings. I was fortunate enough to have an older brother and a younger sister. Both of whom have shared in my laughter and joy as well as my pain and sorrow.  Both of whom I love unconditionally as they do me.
How this relates to autism....... It doesn't really- but it relates to my family and our situation. Robbie is truly blessed to have two siblings.  A sister and a brother. Both younger. Both who adore him.  As parents you worry about what will happen to your children when you are not around to ensure they are safe, happy and healthy.  As a parent of a special needs child, you worry, twice as much.  But watching them play together, share together and laugh together is amazing. The memories they are creating are awesome! Just as the memories of my brother making me laugh so hard at dinner- the milk I was drinking came out of my nose.  Or- my sister and I pretending we were ice skating, in our socks, on our parents hard wood floor, falling down and laughing.  Again- Robbie is lucky. Lexi is lucky. Timmy is lucky. They have each other.
To my sister and my brother- I am so lucky to have you both!

Each individual with Autism is unique............and similar

What it means to be "on the spectrum" (taken from Autism Speaks' website)

 Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have average to above average intellectual abilities. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world. Others with autism have significant disability and are unable to live independently. About 25 percent of individuals with ASD are nonverbal but can learn to communicate using other means.  For some, this means the development and delivery of more effective treatments that can address significant challenges in communication and physical health. For others, it means increasing acceptance, respect and support.

The word Autism creates many different images. I always thought of the person who made little to no eye contact, muttered things to themselves, did not like anyone to touch them, and who was incredibly intelligent. Rain man. A movie I've seen but now can't bring myself to watch. I never thought Autism could look like my son, Robbie. 

How is Robbie doing? The question is often asked. Truly he is doing really well, for Robbie.  Robbie can speak in full articulate sentences, most of the time. However there are still times of frustration for him where he can't communicate what he wants. He still says "NO" every time he is asked a question. It is a defense mechanism. It's easier to say no and then try to understand what has been asked.
Our ABA advocate made a statement the other day that was tough to hear. "Robbie appears to be much higher functioning than he really is. He doesn't have the savant piece many with autism possess and he is really struggling academically."  On a positive note he has a lot of personality coming through. He is funny. He likes to make others laugh. He likes touch. He understands many (not all) social cues. These traits also may add to the appearance of a higher functioning child.
If you ask Robbie a specific question like- How was your day? He'll always respond , my day was good. If you ask him what his name is, he will reply , My name is Robbie. If you ask what did you do today? He'll reply, my day was good. If you ask How are you? He'll reply my day was good.  There are certain responses he has been programed to respond with and he still has trouble answering most direct questions.
The scripting is still constant as well. This morning I woke up to "get the food, feed the bear, get the food, feed the bear, get the food , feed the bear, get the food feed the bear". I know that comes from the movie Over the hedge, but many may not.
Sensory issues are also an enormous task. Robbie literally NEEDS to jumps, swing, move etc. He is getting much better at communicating when he feels like doing these things but still struggles with things like , pumping his legs on the swing set. He is so sensory orientated that while he is swinging and feeling the sensation that calms him- he can't get his legs to cooperate. He has trouble using his body while getting that sensory feedback.
All that being said I was reminded of how fortunate we are, because we are learning the skills needed to successfully manage ASD for Robbie.  Robbie was a guest at a birthday party this weekend. He was excited to go as we discussed it the morning of. However, when we pulled into the parking lot he screamed "No, I don't want to jump." It was at a trampoline park. One we had been to a handful of times and he always enjoyed. The No's continued, but I got myself and "baby brother", as Robbie refers to him, out of the car. I began to walk toward the entrance. Reluctantly , Robbie followed. Once inside he insisted he did not want to jump and wanted to play video games. For the first hour, that's what he did. Eventually, he did jump. 
This party had children from all ends of the spectrum. The boy was in Robbie's class last year but is now mainstreamed with an one- one aide. The older boy (12 or 13) whose father had by the arm for the entire party and was completely non verbal. The boy who ran over to me and asked if I was holding a baby? Was he a boy or a girl? What was his name? And than ran back to jump. The boy whose Mother was trying to calm him down by giving him potato chips one at a time after holding him and talking quietly in his ear. The birthday boys- brothers (8) and (10 or 11)- both on the spectrum, who were happily jumping, each in their own worlds-  and each with an aide. Robbie- who when he decided to jump- would jump from trampoline to trampoline- occasionally knocking others down without noticing, saying "eeeeeeeee"- with a huge smile on his face. None of these children interacted with each other. It was like being at 15 individual birthday parties. For the most part, they were happy.
 What an amazing crew. Each unique, but similar in some ways.  Each having their own challenges and strengths. Each with amazing parents who came prepared with the tools they knew they would need to just get through. Because at the end of the day, after all the headaches, seeing that smile on your child's face is worth it- every parent knows that. Even if, by mistake, we knock a few down or get knocked down ourselves along the way.

I Love Medford Lakes- mostly..........

Nine years ago , as a newly married couple, Rob and I searched for the perfect spot to raise a family. We came across the community where we now live and fell in love. I remember being so excited at the thought of my children riding their bikes to school. To be able to go to the many lakes to swim and canoe. To attend camp in the summer. To be a part of a small community- so similar to a place I had spent my summers as a child and so dissimilar to the city where I had grown up. Fast forward nine years. We have three beautiful children. One is in the school system and we have been happy with her experience. One is an infant and I hope he will have a similar experience. However our first born is almost eight years old and has been out of district for 4 of those years. His name is Robbie and he has moderate autism. His preschool experience in Medford Lakes was frustrating as we - parents and teachers (whom we loved) determined this was not an environment where he could thrive- or even learn. He was put in the back of the classroom- with a small divider on his desk. With the 15 + other preschoolers going through their agenda, he was expected to follow his own with the help of an aide. It was ineffective, for everyone. For the past four years Robbie has been placed out of district in a self contained ABA based autism classroom. He has an aide- as do all his classmates. His teacher is ABA certified. He receives individual speech and individual occupational therapy two times weekly. He has a behavior plan. His class goes on monthly field trips focusing on life skills. He attends social skills sessions weekly after school. He has made a "friend" or two. I use the term loosely because the interactions between those with moderate autism is markedly different than those that are neuro-typical. More importantly, this wonderful teacher he has, and the program, with wonderful aides, he is in, KNOW Robbie. Outside the world of the IEP- Individual Education Plan- he is cared for. They know that he needs many sensory breaks throughout the day. They know that he will be more productive if they let him jump or swing in the sensory room first thing in the morning. They appreciate his humor. They know he needs multiple prompts to complete just about any task. They know he will try to avoid doing his work when a substitute comes into the room by saying "I am sad, or Hug a me." (He is really cute, after all.) They have done this before with other children on the spectrum. They have a program. Rob and I were not shocked when the case worker from Medford Lakes told us the district wanted to "explore the idea" of Robbie returning for his education. She discussed how trust had been an issue previously as we battled to get him into an appropriate program and she understands we may have concerns. When we asked if she was getting pressure from the new superintendent to bring back the students who were placed out of district- she looked us in the eye and said "No, we just want him to be part of the community." Rob and I were shocked however, when he called the superintendent and asked him the same question- only to get a different response. "Yes"- he said. I am going to bring back some students- namely a student- Robbie. He had asked our case worker- who has appeared at 2 meetings to hear about Robbie's progress in the last 2 years- which student she thought had the best potential to bring back. She said "Robbie." So again-trust is an issue. When Rob stated the obvious- there is no current program for Robbie, the superintendent discussed a MD (Multiply Disabled)classroom. This would be a good fit for 99% of the special needs students in the district. What about the 1%? Our 1%? What about Robbie? He can not be the guinea pig for the districts new program. He would be the only student with moderate autism in the classroom. There would be way too many distractions for him to focus. Focus is a huge issue for Robbie. As is regression. Two of the well documented BIGGEST issues for those with autism are FOCUS and REGRESSION. We see regression every summer, every spring break, every long weekend- and even from the end of the school day Friday to Monday morning. Yet- right now Robbie is in a program with a record of success. How would our son fair in a program being thrown together because this is the new superintendents' initiative. We know money is an issue as well. Budgets are limited. What is the price of a child with Autism?
 Again, I love Medford Lakes. We have a child in the school system. I applaud them for putting a program together for the 99% of special needs students. However, Robbie will not thrive here. He will not be able to learn to his potential here. Not yet, anyway. It would be DETRIMENTAL to his development. There is no way to put a price tag on that. More evidence that our case manager does not understand Robbie at all was her comment about "being a part of the community." Robbie is a part of the community. We live here. People know him. He frequents the lake to swim and play in the sand- with us. However he will not play on the sports teams here. He hasn't even successfully completed a season on a special needs team. He will not go to camp here. He needs extensive ESY- extended school year or summer school, and can't ride a bike or be on his own for any extended period of time like the other campers. As quoted by our case manager when Robbie left the district, "The Medford Lakes schools are a great place for the AVERAGE child. However if they are gifted or special needs, it's really not the right place." (Yes- still the same case manager.)
As Robbie runs into my room in the early morning hours to say "Mommy, I'm scared. Hug a me." I almost say "I'm scared too." But instead I say a phrase, if you're around us you'll hear me say often. "I will always hug you. I will always kiss you. I will always love you." And I squeeze him tight. Because that is what he needs. SO now, we prepare for a fight.

He kissed a girl

Here is the question. Is it harder or easier for someone who has an obvious disability than those whose disability is not so apparent? For those with down syndrome there are specific unique characteristics. For those who are in a wheel chair, it is obvious because of how they get around. For someone who is blind, many times they have a walking stick to ensure they do not trip. I ask this partly because of a conversation I had with my 5 year old. There are two boys with down syndrome in her class. She told me that even though they have their own "teachers" everyone in the class helps them when they need assistance.  If you saw someone in a wheelchair and there was not an electric door, wouldn't you open it? If a blind person was going to trip over an object wouldn't you help to ensure their safety? What about someone with Autism? Most of the time you can't tell by looking at someone if they are on the spectrum. I remember someone saying to me " what a shame, Robbie is so good looking." To mean the good looks would be wasted on someone with Autism.
The question is , is it a benefit or a drawback and when does it begin to become one or the other?
Robbie kissed a girl. On the forehead. After they shared a moment discussing what was on his Ipad. It was a friend of  Lexi's who he has interacted with before and who has always been very nice to him. She thought the kiss was great. (Once again, on the forehead.) It showed her that he liked her. She is 5 or 6, so still young enough not to see all the differences in Robbie.  After all, he is almost 8, a cool older brother and very cute! (Says proud mama)  I joked about the future as Robbie put his arm around the mother of this girl ,to show her his Ipad, that he was "buttering her up" to be his future mother in law. All jokes aside this could be a sign of his ability to form relationships in his future. I am happy that he has shown interest in the opposite sex and is aware there are differences. Our home ABA therapist explained that many of the 5th graders she deals with are unable to make the distinction. This causes a lot of issues for them as they go through that horrible stage of growth named Puberty, UGH! Of course there is work to be done as well. His home therapist is going to bring social stories for Robbie to read. These are visual images of life events and situations.  Who can forget the social story called "pooping in the potty." This is poop. Poop goes in the toilet. Poop does not go in your pants. etc, with visuals, really pictures of actual poop in the potty. Sounds funny but necessary. The differences in friendship between girls and boys- age appropriate of course. Should be an interesting read!!

We had Robbie's IEP meeting today and one of his ongoing struggles are with "popcorn words."  Words like THE, AND, A  , etc because there are no visuals used with these words.  For Apple- you can show a picture of an apple. He also struggles with concentration and stimming behaviors. He has a hard time sitting for any length of time and is given many sensory breaks throughout the day. Regression is another big one. By the end of the week many skills are "mastered" but the following Monday just as many are lost. It's like losing 5 pounds over the course of the week only to gain back 3 over the weekend.  So we start again. Robbie is able to walk to the bathroom and back by himself- a huge win but still has a one to one aid in the classroom- as all his classmates do. Yes, Robbie is making progress. He is moving forward but with a lot of help and support. Nowhere near a mainstream environment. Not even a MD (multiply disabled) or LD (learning disabled) environment. He is in a self contained Applied behavior analysis (ABA) based Autism classroom. And that is where he belongs. I make the point because the suggestion of Robbie returning to our home district was brought up today. We know it is not the right place for Robbie.
Back to my original question. Is it easier or more difficult to look like an average Joe? In my opinion , for now, it is better for Robbie that their is no distinct look of autism. While it may be hard for parents, when their children just look as if they are undisciplined , the children of Autism get a fair shot. Maybe they even get to be the cool older brother and kiss the girl. For now., I'll take it :)