Monday, April 20, 2009

Now the "why" behind our Florida trip...

Now that you have had a more than a week to enjoy my Florida pictures (why do I always think I'm going to have all this time for blogging?), it is time to share a little bit about what I learned. In this post I'm going to discuss the principles behind the HANDLE approach for children with autism. Not all of my readers are touched by autism, so it should be noted that HANDLE is not just for treating autism. Many children and adults with a variety of issues, ranging from ADHD and learning disabilities to even stroke, have benefited from this approach.

I've said this in a previous post, and it bears repeating: Although in my sidebar I describe myself as "a mom who knows a thing or two about autism", that simply means I only have about two million more things to learn! It is a never-ending process, and boy have I learned a lot over the last few weeks!

I first started hearing about HANDLE on the yahoo group, Autism Remediation. Group members seemed excited that HANDLE fits in very well with the developmental approach RDI employs, yet addresses some of the co-occurring issues that RDI does not address -- namely sensory issues. Or at least that is the overview I gleaned, which I can now see is somewhat incomplete. Naturally all the positive reports sparked my interest, but at the same time I doubted its potential for Ryne, since sensory issues have not been a major problem for him in recent years. At least not in a way that prevents him from making progress in RDI or with homeschooling. I did, however, buy the book The Fabric of Autism to learn more about the approach, to see if maybe there were more subtle things I was missing that needed to be addressed. The book sat in my "to read" pile for six months, until Carrie invited me to go on this Florida trip. I wanted to make the most of my two-hour appointment with the consultant, so I figured the best way to do that was to have an idea of what HANDLE was all about. After having read the book and visiting with a HANDLE specialist, I can now see that this approach is about much more than just sensosry issues.

The Fabric of Autism is unlike any autism book I have ever read. First, the author and founder of HANDLE, Judith Bluestone (who passed away earlier this year), had autism herself. Her writing is similar to Temple Grandin in that she gives an insider's perspective that we parents just do not have. In fact, that is a major theme of this book: Parents and professionals are missing the meaning behind our children's odd behaviors. Things we view as problems are often the only way the child can communicate the stress his body is under, regardless of his level of functioning. And Bluestone does a frighteningly wonderful job of explaining what those stresses can entail. But instead of just giving an insider's perspective, she uses this perspective to show us how to help our children in a manner that is very different from more conventional approaches. She takes a holistic approach (HANDLE stands for Holistic Approach NeuroDevelopmental and Learning Efficiency), looking at the following threads that all overlap and work together to form the fabric we call autism: nutrition, senses (sound, light, smell), sense of safety, muscle tone, communication, emotions, formation of patterns, energy, social interaction, anxiety, sleep and boundaries. She acknowledges that it might not always be easy for us to see how all these threads are connected.

So as we continue on this journey of interwoven senses and intertwining nervous systems, know that if it were possible to explain autism in a totally linear-sequential way, others would have already done it. It is my task to try to guide you through some known and some unknown territories that loop back upon one another, and to hope I don’t lose you in the process.

In a way, you will be experiencing the apprehension and fear of an autistic person, entering an unfamiliar building, wondering if you are safe and if you will be able to find your way out if you need a quick escape (p.35).
Perhaps that is why the book seemed so different to me -- I really did get a sense of the fear she personally knew and so instinctively recognized in her clients. There was one story in particular I could not put out of my mind.

Carlos was large for 13, and yet small, insignificant in his attempts to hide himself from his environment. He hunched over inside his hooded coat on a warm day, watching the floor as he moved. He had brought with him his favorite toys: plastic coat hangers and an electric cord. He crouched, his back to me, spinning the cord over the coat hangers, lost in the patterns.

He didn't say a word, although occasionally he muttered some sounds. He shuddered if my interns or I or either of his aides as much as twitched. He jumped backwards, still stooped, when the aide in front of him repositioned himself in his chair. Every unanticipated movement frightened this strapping youth. He was utterly terrified (p. 139).
She calmed his fears by saying, "Carlos, I appreciate your being here and trusting me. I know it's taking a great deal of courage on your part to be in the room with me and everyone else. I hope you'll feel safe here." She went on to describe how she and others in the room would give warning before they made any movements, even just to scratch an ear, and how Carlos visibly relaxed once he was released from that fear.

I simply cannot imagine living with that kind of fear and uncertainty, but Bluestone paints a vivid picture.

Most of us with autism don’t inherently know where we end and the world begins. It’s one of the reasons we need to investigate unfamiliar surroundings – to know where we are, and to see the possibilities of where we might be or where others might be.It’s not enough to be told about these other rooms and people. We need to take our snapshots (p.50).


If we don’t feel secure in our bodies, we can’t feel secure in the world. When our conscious attention goes to protecting our bodies or simply staying in touch with our bodies, so we know that we are, then we have difficulty knowing who we are. Operating in this ethereal state, it is much easier and safer to relate to static objects than to people. People move. Children move more than adults.

How unfair that just as someone is working to establish that she is and who she is, she is also being expected to interact with pesky peers who demand that she attend to everything about them and herself at once. No wonder I flunked kindergarten but reveled in escaping into a corner with a book (p.57).
Bluestone explains that a stress on any one of the body's systems is a stress to the whole body since they are intertwined. But in looking at the child's behaviors we can often see what systems need the most help, and when those areas are addressed we often see improvements in all areas. As any parent, I tended to be most intrigued with the areas that I suspected might be issues for Ryne. I particularly marveled at her description of her visual memory. She spoke of "mental snapshots" in her brain that enabled her to navigate through unfamiliar cities with just a brief look at a map and instantly translate verbal directions into mental maps. I can definitely see this ability to make mental snapshots in Ryne (and even in myself to a smaller degree), and while on the one hand it can be a pretty convenient skill, it can also become quite complicated.

Zoning-out is frequently zoning-in, attempting to find the right snapshot that answers the question, but it is mixed up with innumerable others and won’t surface. Some of us develop the ability to categorize and create a filing system for those images so they are more generalized. This wonderful skill combined with another – to archive the photos I rarely need – has helped me process information more rapidly than most people, no matter what modality they use (p.28).
Another area that can be both a curse and a blessing is the seeking of patterns in mundane events. Bluestone says most people with autism seek pattern, but they are often different from the patterns others see.

So patterns can be “good” – giving order to our world – or they can be “bad,” distracting us if we need to find order and they give us none, or directing us to associative images that no one else sees and understands (p.92).
My biggest education occurred in the sections on muscle tone.

Muscle tone, if present at birth, supports most vital functions as well as movements. It is not synonymous with muscle mass or muscle strength but is the degree of tension in the resting muscle. It provides a readiness to respond to stimuli, both according to plans that have been processed and also reflexively, as the body reacts to stimuli that trigger automatic responses. Muscle tone is pivotal to so many functions, but in connection with the central theme of autistic behaviors it is frequently overlooked (p.59).
For Ryne, this may very well be the biggest area of struggle we have overlooked. I am working on another post where I will go over some of the specifics of Ryne's evaluation, so I won't go into too much detail now. But I think that some of the most obvious differences between Ryne and his peers are probably related to muscle tone.

But there is much more to HANDLE than theory.

HANDLE is a neurodevelopmental approach, working to reduce the stress that causes us to be adrift and to feel so little safety when we venture across those bridges to the world of others (p. 124).
The most distinguishing characteristic of the HANDLE approach is what she calls Gentle Enhancement. Treatment consists of short activities that address various weaknesses (some general activities are included at the end of the book, but more client-specific activities are assigned to those who have been assessed by a consultant). But while performing the activities, the child is to be monitored for any sign of stress. One of the most common signs of stress is amazingly reddening of the ears. This is often reported in biomedical circles as a sign of a food allergy. Of course, an allergic reaction is a stress to the body, but it is not the only possible explanation of red ears. This came as a relief to me because there have been several instances where Marc and I notice Ryne's bright red ears and we rack our brains trying to figure out what food could have caused it, to no avail. Maybe we should have been considering other types of stress. At the first sign of stress you are to stop the activity, even if the child seems to be enjoying the activity. By using Gentle Enhancement we avoid overloading systems and causing the child to "shut down." By taking a gentle and gradual approach we are able to strengthen weak systems.

Having only covered some of the highlights, I highly recommend you get your own copy of The Fabric of Autism. I feel so blessed to have had the opportunity to go to Florida with Carrie and meet with a HANDLE specialist, but I think just reading the book and using the activities in the appendices is still empowering. In fact, because
Ryne did not have the full-blown HANDLE assessment, we are only doing the activities given in the book, yet I feel like we have plenty to work on right now. Time will tell if the HANDLE activities actually help Ryne, but if nothing else, I feel like I understand the autistic world a little bit better.

Monday, April 13, 2009

Anything For a Friend

Florida trip
My friend, Carrie, emailed me about a month ago and asked if I would go to Florida with her. She wanted to take her two sons to the Jacksonville area for evaluations with a HANDLE specialist (more about HANDLE in my next post). One of her sons has autism, and she suspected that even though her other son is not on the spectrum he could still benefit from an evaluation. Carrie's husband would not be able to take the time off and she was concerned about making the trip by herself. So she asked if I would be interested in going with them. Hmmm...Florida in the springtime? Twist my arm, Carrie!
Florida trip
Because I have been somewhat interested in the HANDLE approach as well, I decided to bring Ryne along and have him go through a mini-evaluation. Florida is Ryne's favorite place in the world, so he was pretty thrilled -- even if the temperatures were in the 50s the first couple of days. Before you start feeling too sorry for my girls being left behind, they have had their trips alone with me too, plus they had plenty of fun with Daddy all week.
Florida trip
The trip went great. Carrie was a little nervous because Mason (above), her son on the spectrum, had never been on an airplane, but he did great. And he loved swimming, no matter how cold it was! Isn't he a cutie? Carrie did a great job of finding us a good deal on a condo, just steps away from a pool and the beach.
Florida trip
There's something about traveling with a friend that makes even frustrations seem fun. A broken-down rental car, my head cold, the health food store that just wasn't meant to be, a collapsed bed, outlets in the bathrooms that didn't work...all these things had us in stitches. Okay, maybe it took us a day or so to laugh about the car thing. Carrie (above) is a good sport for dealing with Enterprise's poor customer service.
Florida trip
Ryne had a good time with Carrie's boys. When we met at the airport the first thing Ryne said to Mason was, "Why do you talk like that?" Mason, who has limited verbal skills, seemed equally perplexed with Ryne, who had the hood of his sweatshirt pulled up, practically covering his face. So Mason simply reached up to pull the hood down, and I could just imagine Mason thinking, "I don't know why I sound funny, but you look funny with your hood all pulled up like that!" Carrie and I had to laugh at the irony of their interaction -- is inappropriate behavior really inappropriate when both parties are on the same page? Ryne also had fun with Nathan, Carrie's older son (above), even though half the time he got their names mixed up, calling them Nason or Mathon!
Florida trip
And me? It turned out to be quite a relaxing trip. Carrie spent most of her time with the consultant, but I stayed at the condo with Ryne and whatever boy wasn't with her. We had nice walks on the beach and lots of down time. My appointment with Ryne only lasted a couple of hours, but was profitable. Our last day brought bee-yoo-tee-ful weather and Carrie was done with all her appointments, so we all spent several hours playing on the beach. While it would have been nice walking down the beach with my hubby, I built some great memories with Ryne (above). Just what this burned-out mom needed.
Florida trip
So, Carrie, I'm glad I could be of help.

Thursday, April 2, 2009

World Autism Awareness Day

Today is World Autism Awareness Day and April is National Autism Awareness month, so I'm hoping to do several autism related posts this month. I'm going to kick it off with something I wrote quite a while ago. The following essay originated as a devotion for a Bible study I attended and then was reworked for submission for a book about God working in the lives of those with special needs. The reworked version was written about a year and half ago, when we started RDI. Sadly, the book project was put on hold (I think indefinitely), but instead of just letting it sit in my hard drive I've decided I will use this occasion to hopefully encourage you, whether or not you have been touched by autism.

One thing I think all parents of special needs children have in common is that we can quickly become consumed with those special needs. Recently I have been consumed with buying a camcorder so I can record therapy sessions with my son. I have spent countless hours reading through Consumer Report, checking prices online, and emailing other parents to find out what camera has worked best for them. While I am concerned about spending our money wisely, I think the real reason I have been so consumed with this purchase is because the therapy we will be filming is new for our son, and I want everything to be perfect. I’m excited about the possibilities this new therapy offers my son, but hesitant to get my hopes up too much. As opposed to other therapies we’ve used in the past, my husband and I are responsible for the implementation, so I worry that I will not do a good enough job. I have a knot in my stomach just thinking about it. And yet it reminds me of another time I had a knot in my stomach, and with that memory I am instantly comforted.

In August 2005 I took my son, Ryne, to his first day of kindergarten. Just about any parent will agree it is not easy to send a child to school for the first time, but this was more than first day jitters. Just three and a half years earlier I had been told that my son had autism. His speech was so impaired that we were told he might never talk. He would not make eye contact, and he was locked in his own little world. The future looked bleak, but God provided many opportunities for Ryne through intensive therapy, and slowly he began to speak words. Curiously, a year later he still could not spontaneously speak a two-word sentence, but he could sing entire songs with perfect pitch. My husband and I took every advantage of this chance to enter Ryne’s world by constantly singing with him. Ryne’s favorite song was the classic hymn, “Great Is Thy Faithfulness.” At bedtime I would often cuddle with him and together we would sing the third verse over and over:

Pardon for sin and a peace that endureth,
Thine own dear presence to cheer and to guide,
Strength for today and bright hope for tomorrow,
Blessings all mine and ten thousand beside!

I often wondered why he loved that hymn so much. Did he have any idea how encouraging those words of peace and hope were for his weary mom? Did he know that every time we sang together I felt like God was right there with us cheering us on?

So that first day of kindergarten was the culmination of several years of prayer and dependence upon the Lord’s guidance. For many parents of young children with autism, goals of future independence, such as living on their own, seem too remote; so we instead focus on kindergarten. Ryne had improved so much that he was able to attend a regular kindergarten class with the help of an aide at the same small Christian school his older sister would be attending. At the time it seemed almost as if we had finished our journey. This was a new stage of life for Ryne, one that would no longer be dominated by autism. He would just be Ryne.

Being a Christian school, the first day of school always began with a chapel service that parents were invited to attend. I slipped into a seat in the back of the sanctuary, hoping to keep my toddler daughter quiet and still catch a glimpse of Ryne sitting with his class. He was radiating happiness, but I was consumed with thoughts of how he was really going to fit in. Had we done enough to prepare him? Would he thrive here?

And then the principle asked everyone to stand and open their hymnals. Any number of hymns would have been appropriate, but this hymn had been hand-picked by God. It was a good thing I was sitting in the back, because as the pianist began to play “Great Is Thy Faithfulness” I was completely flooded with emotion and cried through the entire hymn. God had really taught me what it means to trust in His faithfulness in the last few years.

I am sure that God provided that little miracle so that I would never forget His great faithfulness. It is so easy to do. We all have those times with our special needs children where we get consumed. It might be preparing for an IEP, learning about a special diet, dealing with difficult medical issues, trying to figure out how to pay for it all, wondering if our child will make friends, or just buying a new camcorder. When a person becomes consumed it means to fill one’s mind or attention. If we loose sight of God’s faithfulness it can lead to another definition of consume: to destroy completely. But listen to this great promise in Lamentations 3:22-23, “Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.”

God is faithful. He is faithful to parents of special needs children. He is faithful to our special children. It doesn’t mean we know what the future will bring. In fact, I now home school my three children. Does that mean God was not faithful since that wonderful little Christian school turned out not to be the perfect place for my children? Absolutely not! God’s faithfulness relates to His character, not my circumstances. He is faithful to be Himself and that is all I need. Reading on in Lamentations 3:24- 25, “I say to myself, ‘The Lord is my portion; therefore I will wait for him.’ The Lord is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the Lord.” I’ve gradually learned to stop letting autism consume our lives. Autism is still here, but Ryne does get to be just Ryne now. Instead I try to be consumed with the things of God, learning what it means to wait quietly upon Him.

Whatever you are consumed with, give it to God and let Him be your portion, wait for Him, and put your hope in Him, because His faithfulness is great. He will give you strength for today, bright hope for tomorrow, and His blessings will be uncountable.

Please remember in your prayers all the individuals and families touched by autism. If you are interested
click here to access the Children of Destiny's 2nd annual Turning the Tide! prayer calendar, which gives scripture and suggested autism related prayers for each day this month.