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 :)

What would you do?

Think of a time when you felt so anxious about a situation or person. A tough day at work. Too much homework to get through. A fight with your spouse. A truly horrible day. What would you do to make yourself feel better? Go for a run? Take a yoga class? Get lost in a great book? Meet your best friend for a glass of wine? What if you were a 7 year old with Autism?

Can you imagine feeling like spiders were crawling on your back? You could feel them but not see them to brush them off. You would wiggle and jump, probably squeal or make some strange noise. Now imagine you could not communicate what was going on.

Robbie has been talking about spiders. Sometimes they are in reference to his latest movie obsession- Cloudy with a chance of meatballs 2- "Cheese spider" but sometimes , according to him, they are on his back. The other day he was very uncomfortable and while telling me about the "spider" on his back asked me to scratch it. I did as requested and then he put my arm around him and squeezed tight. As quickly as the situation had began, it was over. It made wonder how many times in a day he experiences that amount of distress? How many years had he been troubled by this without the ability to communicate? Makes me sad to think about, and relieved we are at a point where he can explain his distress- at least a little.

I recently shared a blog on my facebook page written by a 13 year old girl with autism. She was blogging about a situation she observed. A boy of similar age, who was nonverbal, was in gym class. He made his way for the door to escape the overwhelming noise, activity, smell, sights, feelings, etc. The teacher and aid restrained him. They had to. That is their job. To keep him "safe."  They were boasting about how they got him just in time. Feeling proud of their jobs. To me- that makes perfect sense. Once again, they were just trying to keep him safe. However, from this girl's perspective, all he was trying to do was get to a safe place. A place where he could breathe. Where things were quiet. Amazing. Everyone had the same end goal but because this boy could not communicate, it was not met.

I write about that situation as I am continually trying to assess what Robbie needs. Not what he wants- candy and movies - but what he needs to function at his highest potential. To be the best, and most comfortable, Robbie. Thankfully things are getting easier. We are fortunate. But we will always need to reassess situations and environments, as all parents do.  Next week we meet for our 3 year IEP meeting to discuss re- evaluations. To decide what tests should be retaken and where his placement will be. I am hoping there will not be a fight to keep him in his current classroom,  since it is out of district. Fingers crossed. We are prepared. We are his voice. He is our heart.

Self Regulation

"I'm OK mommy. I'm OK mommy. I'm OK mommy." Robbie is almost yelling from our living room. I am in the kitchen and I did not ask him if he was OK. It is a question that I ask often- usually with the scripted response "yes I'm OK."  Sometimes I will get "I'm not OK." But rarely is there any explanation of why he is not OK after. I know there is a problem because this circle of language continues. It's similar to those you see in a scary movie hugging their knees telling themselves it's going to be alright when we all know it is not. For Robbie- it's all part of his ability or many times inability to self regulate.  He has gotten much better at it.  Generally we  know what seasons, days, or issues are going to be a challenge. Right now for instance. We are in the middle of a brutal winter. Lots of snow- snow days. Too much screen time and not enough output of energy. It happens every year and we all feel it. To Robbie's credit he has developed some coping skills. The small indoor trampoline, laying under many blankets and pillows for quiet time, deep breathing techniques, and telling himself he is OK.
Saturday night Robbie had a tough night. He fell asleep around 9:30pm after his nightly ritual of clonidine and melatonin. At 1am he woke up. From 1 am on- he was awake. By 2:30am I had given up and told him to grab his Ipad in hopes I could get a little sleep myself. By the next day around 11am we heard him in the kitchen. He had gotten his clonidine out of the cabinet and was crushing a tablet to put in the juice cup he had retrieved. Rob asked him what he was doing and he explained he was tired and wanted to sleep. Rob moved the medication away explaining it was for night time use only and took Robbie upstairs in hopes of getting him settled so he could get some sleep.
The exchange floored us a bit. We thought we were being sneaky by slipping the medication into his juice at night. We've always called it night time juice but never imagined Robbie really understood what we were giving him. Another example of how bright this boy really is. Most times it is unclear if he is paying attention to anything going on around him, aside from his movies, Ipad and anything food related.
The hope is Robbie can get to a point where he can self regulate, especially at the appropriate times. Nighttime is a big one. Because we're all tired!