Saturday, April 29, 2017

An Autism Mom's Review of Sensory Swim

In February of last year we enrolled our son in the Sensory Swim program.  A few months after starting with them, I wrote an article about the progress I was seeing and their methodology with autistic students.  We are finishing up with Sensory Swim due to a military move and I wanted to offer up a final review of our time with their program.  Drowning accidents kill way too many autistic adults and children and we, like many autism parents, worried for our son's safety.  Along with autism, our son has a number of deficits that work against him in a traditional swim lesson setting.  He has a speech delay, so he does not always understand and process verbal instruction.  He has ADHD and needs constant engagement and reinforcement to stay on task.  He has severe dyspraxia, which affects his core strength, fine motor and gross motor skill sets.  He has sensory processing disorder, which makes him very sensitive to sounds and other stimuli, making a number of environments hard for him.  He has severe anxiety and severe separation anxiety, making any new settings or working with new people difficult.

Initially I was very concerned that our son would not go with Andrew and Mary into the pool unless I was right there.  I also had a lot of anxiety myself that they would not be able to hang with him and that he might get aggressive or be too hyperactive during his lesson.  I was concerned for his safety in the water without me right there.  After just a few sessions most of those concerns were alleviated.  He enjoyed the water so much that separating from me was not that big of deal for him.  I also noticed that Mary and Andrew had a very good rapport with him and their other students.  They could not only handle his hyperactivity, but they expected it.  

We watched him over a few months get much more comfortable in the water.  They only worked in the deep end so that it forced him to attempt to tread water.  He learned how to hold his breath and "blow bubbles out" when he would go under water.  He wouldn't tolerate goggles, but got more comfortable with water in and near his eyes.  I thought, initially, well even if he doesn't learn to swim at least now he understands that he needs to try to get to the ledge or something to hold on to.  I thought at least now he knows not to breathe in if his head is under water.  And with how week his core is and how rough his motor planning is (at six he still cannot pedal a tricycle) I really did not expect much more.

Over time though, he started going a few inches further each time.  At first they would propel him and wait for his natural instinct to take over.  As he started getting a feel for it, over multiple sessions, they would back up further from the wall and encourage him to paddle heard enough to get to the wall.  They worked with him on kicks and paddling his arms separately as he couldn't seem to do it at the same time.  But eventually, he started kicking while he was paddling.  Once he got a little stronger and a little more sure of himself they would have him jump to them in the water.  They would back up a little more each time and he didn't seem to even realize that he was swimming.  He built on this and before long was swimming the width of the pool without any assistance.  It was really an amazing progression to watch.

After using Sensory Swim for about 15 months and observing them with my son and other children these are the things I like:  They don't shy away from harder cases or kids that hate the water and they go at the child's own pace and validate the child's anxiety.  They work with all age groups and meet the child where they are developmentally.  They know how to work with nonverbal, hyperactive and aggressive children (many swim programs won't even consider teaching children with these issues, regardless of their disability).  They use the deep end (where they can still touch but the children can't) for lessons and this seems to force the issue for kids who would otherwise be hesitant.  Once the child is starting to get it they give the child space to be independent in the water.  They will stay close by for safety purposes, but they will stay out of sight lines, thus encouraging the child to do it on their own.  Mary and Andrew are teaching seminars, printing materials and books, and answering questions for anyone who cannot get lessons with them but wants to know their methods.  They genuinely want to help our community and lessen the number of autistic children dying in drowning accidents every year.

I wish that Sensory Swim was available in more areas of our county as I truly believe they have the right attitude and methodology to help so many in the autism community learn to swim.  Because they have so much experience with special ed students and travel weekly to help as many families as possible, their lessons are more expensive than traditional group swim lessons making their program less accessible for some.  But for us, the proof is in the results and it was totally worth it.  I cannot put a price on one less thing to worry about when it comes to my autistic son's safety.
**I have not received any compensation, products, or services in exchange for this review.  I simply want other families to know what worked for us.

Wednesday, April 12, 2017

What About Me?; The Story Behind Our Autism Sibling Book

A little over a year ago our eldest son started having a lot of behavior problems both at home and at school.  He has always been our easy going kiddo and definitely the most mellow of our bunch, so imagine my surprise when I was called in for a meeting with the principal, the kindergarten teacher and a counselor to address out of control behaviors and outbursts that were occurring in the classroom.  What??  We had been seeing some emotional moments at home, but most of them seemed reactionary to living with a brother on the spectrum who has a lot of behaviors himself.

As I talked through the meeting with the school (a meeting at which they recommended therapy for him) it dawned on me that I was so busy tending to our autistic child's needs and behaviors that I had lost sight of how hard living in our home must sometimes be for a child.

"Are there problems at home?" they asked.

Wow was that a loaded question.  I explained, "Ever since the last move our autistic child's behaviors have been pretty bad.  There are a lot of mornings before school that he screams the entire time I am trying to get him ready.  He will go after me.  He will sometimes go after them.  Going from that to walking through the school doors ten minutes later, that's probably pretty hard..." my voice cracked.

His teacher spoke up, "He talks a lot about needing to be perfect and needing to do everything the right way.  He seems to get down on himself a lot.  His emotions lately have just been right at the surface and it takes very little to bring him to tears."

"He's definitely had to grow up fast and be the bigger person all of the time.  But he's usually such a happy kid.  I don't even know what to say.  We'll talk to him."

I didn't know how much to divulge. I was definitely being honest that I didn't know what had changed, but maybe that was the problem.  Nothing had changed.  For years Brennan (who is only a year older than his autistic brother) has had to hold it all together.  For years he has had to go into another room and lock the door when his brother is having a meltdown and trying to go after him.  For years therapists have come over multiple times a week to play with just his brother.  For as long as I can remember he has done everything in his power to keep the peace.  Even if that meant giving up his favorite thing or missing out on something he really wanted to do to avoid a public outing nightmare.  Even with all of that, I really thought he was handling it in stride.  He talked about knowing his brother is different and that he needs more attention and that sometimes he has different rules.  He always said he understood when birthday parties had to go a very specific way or when we couldn't watch the movie he wanted because his brother couldn't stand the sounds in it.

After talking to the school and an outside therapist I realized that although Brennan was talking a good game, there is only so much of that that a seven year old can truly grasp.  He knows things have to be different, but he won't really grasp the depth of why his brother is the way he is for quite some time.  And all of this time the resentment, anger and sadness about everything he has seen and everything he goes through have been simmering right under the surface.  He loves his brother and never wants to say when his feelings are hurt or when he is angry his brother takes something from him or hits him, because he knows it's not his brother's fault.  But that doesn't mean it's easy.

As I was looking for resources to help him understand everything he was feeling, I realized there isn't much available for autism siblings.  I saw a number of books that explained autism to siblings, but none that worked through these very real issues he was having and that I assume many autism siblings feel.  

After realizing how much all of this was weighing on Brennan he started counseling and he and I sat down and talked.   We talked about times he has been sad about having to leave something he was enjoying doing because his brother was upset.  We talked about how it makes him sad when he sees his brother hit me.  We talked about how far his brother has come and how now playing together is a lot easier than it used to be.  He mentioned that he loves helping his brother and trying to make him feel better when he is upset.  I asked him if he wanted to write down some feelings.  I told him that it always makes me feel better when I do.

I looked at what he wrote and some of it broke my heart and some of it made me very proud.  I told him there were a lot of other kids probably feeling the same way, but maybe they need a way to talk about it too.  He was very open to the idea of sharing his thoughts and feelings about being an autism sibling, but as we worked out some of the harder memories there were some tears.  At one point he said talking about certain memories was too painful and he got up and walked away.  He later came back to it and said he knew it was an important part of his story.

We formed his experiences and memories into a beautifully illustrated story about the up and downs of being an autism sibling.  As our illustrator Emily Neff brought the story to life, I couldn't believe how moved he was by his own story.  We kept our message positive, but we didn't shy away from the hard stuff.  We hope that What About Me? will help a lot of families that work everyday through the realities of living in an autism household but always try to see the beauty in being an autism family.  We are incredibly proud of Brennan for the person he is and the person he will be and much of that has been shaped by being an autism sibling.  We see in him compassion and empathy well beyond his years, and I am so grateful he was willing to share his story to help other kids.  

I want to tell you a story...

I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad...