Tuesday, May 31, 2016

I was the parent who would never medicate my child; until I did.

Before I was a special needs mom there was a lot more black and white. I was guilty of a lot of opinions, some judgment and more ignorance than I would like to admit.  Before I was a special needs mom, there were a lot of "I would never" proclamations. And one such proclamation was "I would never medicate my child."

Of course when I would talk about this I wasn't thinking about abstaining from medication needed to treat a disease or illness. I was talking about the other medicating. The medicating that still has a stigma attached to it. The stigma that perpetuates the idea that parents who medicate their kids are lazy or don't know how to discipline their children. The stigma that has kept me from writing about this decision until now.

Part of me blames that stigma for my bias. Another part of me recognizes that my preconceived notions were based in my own lack of understanding of mental illness. Even after witnessing our son's inability to sleep, hyperactivity, compulsiveness, anxiety, mania and aggression, we were hesitant and scared to talk to the doctor about medication.

Were we closing doors for him? Were we giving up on therapy? Was there any other way? Would meds change who he was? Could they hurt him? Were we taking the easy way out? Was it healthy to continue on without medicating?

With him only sleeping three hours in a 24 hour period most days and with his anxiety so high it was literally crippling him from functioning, we knew we didn't really have a choice. As his aggression spiraled out of control and therapy was so limited, we knew it was the only way to keep everyone safe. And so we chose to medicate.

There is no magic pill. Even after choosing to medicate, he still works so very hard to overcome the challenges autism and its accompanying conditions present him. He still struggles with anxiety and compulsiveness. He still has and progresses in hours of therapy every week. Even after accessing quality therapy, he was struggling with issues therapy could not address.  We didn't give up on therapy. We didn't give up on him.

Medication did not change him; it helped him. I do not regret the choice and hope that he won't either. And looking back at his pained gaze in moments that his anxiety and senses were assaulting him; looking back at manic episodes that had his blood pressure through the roof; looking back at his absent stare due to another 28 hours of continuous wakefulness; my only regret is not helping him sooner.

He still is a very active little boy. But now he can play with his little sister and I don't fear for her safety. He still jumps and flaps and has an unmatched excitement for life. But now he can go to a new place without shutting down or melting down from fear of the unknown. 

We, as parents, would never let a deadly illness or ravaging disease go untreated in our children's little bodies. Why should mental illness be any different? We owe it to them to not brush childhood and adolescent mental illness under the rug. We owe it to them to be honest that it is real and it can be scary and overwhelming. What does it say to them when we choose to hide certain diagnoses and certain conditions? Doesn't it tell them we buy into the stigma too? We owe it to them to show the world mental illness cannot be taboo, we are not ashamed and they shouldn't be either.

Our society's inability to talk about mental illness openly is the reason we lack resources. Our choice not to talk about it is the reason more people take their own lives over asking for help. When we choose not to talk about childhood mental illness we pull a wool over society's eyes while families across our country go through hell and search for answers.

I was a parent who would never talk or write about our son's mental health issues, but now I am because it needs to be said and needs to be heard.

Thursday, May 26, 2016

Beyond the Label; We Are More

I am always surprised by how many parents of not-yet and newly diagnosed children seem fearful of the autism label.  Many keep the diagnosis a secret to try to avoid a certain stigma being attached to their child.  Others avoid an evaluation and/or diagnosis at all costs, because they think as long as it is not written down on an official piece of paper they can somehow avoid the reality that their child has autism.

I don't fault these parents.  I think they are trying to do what they think is best for their children.  We ourselves had some hesitation about being open about our son's diagnosis.  For us, it was never a matter of being fearful of getting a diagnosis, but more so a concern for his privacy and the matter of whether or not it was our story to tell.  When we sat down and had that talk after the diagnosis, we agreed that being open about his autism and proud of who he is was our best way forward.

The label for me has always been more about getting him access to the services and education he needs than anything else.  A diagnosis, in a way, was a relief.  It gave us a plan.  It gave us a way forward and it gave us insight into the best ways to help him achieve his highest potential.

I use both phrases when talking about my son's autism.  I sometimes say he is autistic.  I sometimes say he has autism.  Both to me are labels.  Labels that do not scare me.  Labels that make me proud.  Labels I hope that one day make him feel proud, and not ashamed.

Clearly, I don't mind that my child is labeled.  But I do mind when people can't see beyond that label.  There are so many areas of our lives that have become all about that diagnosis.  I fear that the doctors, and teachers, and therapists working with him will not always understand he is an individual, not a diagnosis.  He is a person, not a statistic.  He is autistic, but he is also just a boy.  He is funny.  He is strong.  He likes to snuggle.  He likes to jump.  Autism may be part of him, but it is not all of him.

And as he enters kindergarten next year, I can only hope that his teacher will take the time to get to know him--not just the codes on his IEP.  I can only hope that she will take the time to let his personality shine through, just as any kindergarten teacher would get to know any new student.  I appreciate that his teacher will be aware of his challenges and struggles from the beginning, but I hope she is also aware that he has strengths and brilliance.  Teachers would never make assumptions about typical students they have never met.  Why should it be any different for our kids?

You may know the label, but don't assume that means you know my child.

Parents across the country asked our autistic children to describe themselves.  And even in houses where autism is talked about openly, all of our kids found a lot of other words to tell the world how they see themselves.  In fact, most of our kids didn't even mention autism; proving that they know they are so much more than any label.  They are individuals; each one with unique characteristics and strengths.  

Autistic may describe them, but autism does not define them.  This is them.  They are boys.  They are girls.  They are more than a label. 

Oscar from Letters From a Spectrum Mom
Our Inspiration 

Jojo from Jojo's World
Maddox from Maddox's Autism Chronicles
Summer from Summer All Year Round

Oliver from Jojo's world

Thursday, May 5, 2016

Autism and Swimming; Confronting an Epidemic

As a parent of three kids 6 and under (one of them having autism), summer activities involving water have made me uncomfortable for years. Unless it was a splash pad or a pool with only a foot of water we pretty much just avoided it. Even in a few inches of water in the bathtub I would hover within arm’s reach and give constant reminders, “Don’t put your face by the water” or “No standing you could slip.” As we started to see how much our son with autism enjoyed the water we knew spending a summer avoiding pools and lakes was doing him a disservice. It was doing them all a disservice but with three of them and two of us we felt pretty limited. Compounding my fear of my autistic son drowning were the staggering statistics of how many in the autism community lose their lives to water. In 2012, the National Autism Association reported that accidental drowning accounted for 91% of the total U.S. deaths reported in children with an Autism Spectrum Disorder ages 14 and younger subsequent to wandering/elopement. With the many deaths in recent years due to drowning, I assume that percentage has only grown.

I knew we needed swim classes for all of the kids, but I also knew that finding someone to work with and be successful teaching a kiddo with autism would be difficult, if not impossible. We recently moved to the DC area and I heard about Sensory Swim, a program specifically for autistic and sensory challenged individuals. When I spoke on the phone with Andrew and Mary (Sensory Swim’s owners and founders) I asked about a million questions and tried to calm my nerves by understanding their methodology and safety measures. I found out they both had a background in special education and after seeing a demand and need for effective swim classes for our community had decided to apply their knowledge and skill sets to teach our kids how to swim.

We signed up and took the plunge. I watched as my typical son took typical swim lessons alongside our son with autism and was pleasantly surprised by how different Sensory Swim’s methods were from regular private instruction. They started in the deep end and let him get a feel for treading water. With only a few feet between the two of them they would propel him into the direction of the other so he could get the feel of moving forward without being able to touch the bottom. They didn’t try to explain to him how to hold his breath or how to kick his legs. They SHOWED him everything they expected him to do. And to keep him motivated and working each time they would lift him up high and spin him or make huge waves to make him laugh. He would get positive reinforcement every time he imitated what they showed him.

I watched my older son and realized none of the methods the typical swim school was using with him would have worked for our autistic kiddo. He would not have understood the demands put on him and he would have not had enough motivation or silliness to stay engaged. Seeing how hands on Sensory Swim was and how well he responded, a lot of my fear dissipated. And although I know we have a ways to go, seeing him put his head under water without anxiety and watching him know how to hold his breath now are BIG first steps. Watching him get about six feet now doggy paddling on his own, I am hopeful that the goal of him swimming and staying safe if he were to get in the water on his own is within reach.

Andrew with another student.

And as I have watched these successes and milestones and just how happy he is in the water, part of me is aching. We need more. We need access. We need every autistic child and adult in this country to have the chance to learn how to swim. So I sat down with Sensory Swim’s founders and talked to them about how we could make it a reality and what parents can do if they do not have access to a program designed for autistic, nonverbal, and/or sensory challenged kids.

“The most important thing we do is gain the child’s trust. We get that connection with them,” Andrew explained. “About seventy percent of our students have been instructed somewhere else before us and have this traumatic experience of being forced below water before they were ready. It takes a lot for us to undo that trauma.”

Although some organizations are pushing for funding for swimming lessons for autistic children Sensory Swim’s concern is that most of the money is going to swim schools not necessarily trained in how to handle or actually teach special needs kids. They recounted a number of conversations they have had with instructors at other swim schools in which they were shocked to discover the goal was never to get the child to learn how to swim. These programs admitted they do not know how to communicate to our kids to teach them so they just let them enjoy the water and learning to swim is rarely the outcome.

As the demand for Sensory Swim lessons increases, Andrew and Mary have continued traveling and teaching teachers their effective methods. They want more schools to be focused on actually teaching our kids how to swim. “We will tell swim schools and teachers and parents all of our methods all day long. It’s not a big secret. We would be happy if effective special need swim lessons were all over the country as long as they worked.” For now, Sensory Swim is only available in Maryland and Virginia and they travel to each location on different days of the week. They are looking into expanding and hiring on additional teachers, while ensuring safety, quality and effectiveness remain the highest priorities in their program.

Because not everyone has access to effective special needs swim lessons, I asked Mary how she felt was the best way to overcome the child’s fear and for tips on how parents can best teach their autistic children how to swim. She explained, “Whether you are the parent or the swim teacher you have to validate their fear and anxiety. It is real. Acknowledge that it is scary to go under water, but say we can do it together. You just have to make the whole thing a shared experience. Get down to their level in the pool and try to experience it as they are experiencing it.”

She also emphasized the importance of teaching all safety-focused things first. Teach them to get to the side of the pool no matter what their method looks like. At that point it doesn’t matter if they are using correct strokes or whether or not they have the correct form. Let them sit on your knee and reach and propel towards the wall, allowing for more distance each time as they are ready.

One of the biggest obstacles to our children learning how to swim is our own fear and anxiety about our kids’ safety around water. That anxiety often transfers to the child and their apprehension to get into the water can be that much harder to get past. If we never expose them to water in a controlled environment, they will be clueless as to the dangers of water and what to do if, God forbid, they ever wander off and come upon a body of water or a pool by themselves.

We as a community are seriously failing at keeping our kids safe from wandering deaths. The dangers of elopement will always be there for many of our families, but getting past our own water anxiety as parents and making a commitment to teach all of our kids to swim can eliminate one risk that is killing so many. 

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...