Tuesday, January 6, 2015

Walker's therapies

I think unless you've walked this fairly intense therapy path with your child, you might not really understand the things it does. It actually does what it says it does. I heard a woman in a position of authority in education glibly state that one child who had an autism diagnosis was doing so well now that he must have been mis-diagnosed; he probably never had autism at all. I have no idea who this child was or what the circumstances were. She could have been right. But I really doubt it. 

This idea that a doctor sees a child for 20 minutes and labels them autistic is not true. The diagnostic process is involved and thorough and if this child had that diagnosis there was a reason. Attributing his success in mainstream education to a mis-diagnosis is dangerous because it overlooks the idea that the child may be successful because he found the right therapies to help him learn to function. And if success isn't attributed to therapies then therapies are not valued. They are not pursued by those in charge of allocating funds and also not encouraged by pediatricians when things start to seem 'off' with a child. That is catastrophic for families with special needs children.

Partly for this reason and partly for the purpose of documenting this for Walker, I'm going into mind-numbing detail about the therapies we have pursued. I want him to know how his story.

Side note, if anyone is starting this process I have a LOT to say on the subject that all evaluations are not equal but that is a separate issue. It would have been helpful information for me in the beginning so email me if you have a question!

Walker started working with a speech therapist on food aversion at age 3 1/2. We saw slight (VERY SLIGHT) improvement in variety of foods but noticeable improvement in expressive language, eye contact, and desire to engage. Therapy helps more than the targeted goal. That lasted for about six months when he was three.

At age four, when he was diagnosed, he started working with an occupational therapist. He finally started sleeping all night! Woo hoo! In the autism world that is an ENORMOUS victory. The things we did each day are to spin on each side 20 times, then inverted, twice daily, and to do a brushing protocol every 3-4 hours. It involves a surgical brush, sort of like you get when you have a baby, on all limbs and back and joint compressions on every joint to provide sensory input. The spinning is to provide vestibular input that his body needs to be regulated and the brushing provides sensory feedback to help his brain organize itself in a more regulated way. It also helps with proprioception, which is the body's ability to know where it is in space.   Both of those things sound vague but have measurable impact on a child with sensory processing issues. When Walker starts chewing his shirt or making weird, jerky movements with his arms or legs, I know it's time to brush and the behavior slows. Over time, the frequency of these things taper as the brain changes. For example, when he started OT, he couldn't get dizzy. That's not good. He would spin insane amounts of time, quickly, and his body never registered that he was moving. You can gauge this by the eyes. They'll jerk back and forth if you are dizzy and trying to focus or remain still if the vestibular system is unaffected. Now, Walker gets dizzy. That matters because it means his body is acting in a more neurotypical fashion and he is closer to functioning on an attainable amount of sensory input from normal daily activities. These things add up to a calmer and more regulated child who is able to interact with his environment without the added burden of meeting all these sensory needs. It's less that he has to overcome to feel secure and be successful. 
Walker is giving a fist bump, not throwing a punch.

He also has food play at each meal to support whatever food the therapist is working on at that time. That process is basically desensitizing him to new foods, one food at a time. As slow as that sounds, it's actually even slower than that. But it works. For example, he now eats turkey (which is rolled in paper towels to ensure it is dry and then cut into squares to ensure a uniform, safe appearance) but it's another protein source! It originally had to be cut out with a goldfish cookie cutter and now he accepts squares so that is big progress. And he eats it in amounts that have nutritional value. Each new food takes a month or more of daily work, supporting what the therapist does in her sessions and weeks of maintenance, offering it in regular intervals so he doesn't forget that it has become a 'safe' food. If I didn't live this and see his struggle this would all sound ludicrous to me. I can tell Hayes, try a bite of spaghetti (or whatever) or you can go to bed and he will try the bite. It's not a phobia for him. Walker will starve himself if backed in a corner like that. That is not an exaggeration. I'm so thankful we have found an approach that works and he is making progress! 

Right now he is working on bread. He eats peanut butter already so the goal is a peanut butter sandwich. For some reason, bread is offensive to him. The first session, he gagged at the sight of it on his plate. Truly gagged! These extreme limitations on food limit how much one can participate in social events and normal activities. It also immediately marks him as different and I don't want that for him. It also isn't something he will outgrow, as toddlers do their picky eating, so we are choosing to tackle it sooner rather than later. 

In August, he started a listening therapy and I think that has been beneficial. The therapy is listening to filtered classical music, mostly Mozart, through bone conducting headphones which provide input to the vestibular and proprioception systems, while doing various cognitive and motor skills exercise. It involves your brain processing multiple inputs at one time and that encourages synaptic development. It impacts all areas of your brain and helps the two sides work together (hemispheric integration) which increases emotional regulation, sleeping and waking, motor skills and anything else you can think of. There are 60 sessions in this program and the music gets progressively higher in frequency and the exercises increase in difficulty. The exercises always target hand eye coordination, cognitive thinking, vestibular input, proprioceptive input, and gross and fine motor skills. It is hard work for Walker and I have seen significant improvement. One basic and measurable example is hand eye coordination. When we started, one exercise was to hold a bean bag in one hand and drop it into the other hand below.  He was almost five at that time and it never occurred to me that would be difficult for him. It was a disaster. He tried it every wrong way, even wrong ways I couldn't have even thought of to try. This was a major struggle for him! Now, he's got it.

He must have been hearing something pretty upbeat to inspire his little dance moves. :)

 But there has been far more improvement than just completing these exercises. His expressive language has increased significantly. For example, he can routinely now tell me things about his school day. He is now able to express thoughts about things that he cannot see and that is new for him. In contrast, Hayes, at two, talks his head off about his day. Little things come up that remind him of his school day and he shares them. Walker, last year at age four, shared basically nothing. If I asked questions, he would occasionally answer correctly but usually he would start crying and either scream or say he didn't want to talk about it. Now, Walker can calmly give a couple of details from his day, and he now wants to. That's an intangible improvement but speaks to his desire and ability to relate to others and engage in relationship. It's also a huge improvement in expressive speech, to be able to communicate something that resides only in your head. For someone on the spectrum, that is a feat. 

He does equine therapy which I also think has helped in intangible but meaningful ways. The idea is that the desired relationship with the horse encourages the child to engage in things they wouldn't normally do. It's a conduit to connect, basically. So Walker is on horseback while someone leads the horse and ensures the horse only responds when Walker gives appropriate words or cues. In the meantime, the facilitator of the session is getting him to do higher thinking problem solving skills and engage in sensory activities that are undesirable to him but beneficial. She's expanding his comfort zone and by broadening his problem solving skills. She I s making him use his frontal cortex and developing new synapses in his brain to promote more reasoned behavior in the future. One immediate result I saw was his desire to use people's names to address them. For the horse to move, Walker had to address him by name. There was an immediate correlation with his desire to learn and use other people's names. He used to call every new boy he saw Graham, becuase names just didn't matter much to him. After two equine therapy sessions, he now says, 'I'm Walker, what's your name?' That wasn't a result of me teaching him; he made the connection that names have purpose and power through working with the horse. According to research, coming to that realization (and others) through relationship creates synapses (connections) in your brain. In contrast, being told that names matter might make the child try to use names but there is no inherent reason for the child to understand WHY using someone's name matters. That's a slight difference but important distinction. I heard Temple Grandin, a very accomplished person in the autism spectrum, speak about why therapy with animals was beneficial. Her opinion was that animals deal in a completely sensory world. They think in images and react to sensory input as those in the spectrum do. That makes so much sense! They are speaking the same language. 

That leads me to the next thing. We did lots of adoption/trauma education and training when Caroline came home. One thing kept resonating in my head was a quote stating, 'What is broken in relationship must be healed in relationship.' While the quote was referencing children that have had trauma, it applies to Walker too. If the issue is relational, anything lacking will be supplied only through  relationship. That resonated with me for many reasons. One is that it's biblical. We were designed to be in relationship with others and if that is impaired then it is a problem. Also, God is relational. He designed us to need relationship with Him and to function best when that intimacy is rich. I could go on and on but I had a nagging feeling in all these therapies that I was missing it. I felt like we were putting a band aid on something without doing anything to address the source. 

Then God provided abundantly! Hayes' speech therapist (whom I LOVE) kept telling me about someone that she thought could help us but didn't have openings in her schedule. After Walker had a breakdown of unprecedented measure in front of her, she told me she would call her friend and encourage her to contact us. She called her friend numerous times on our behalf and advocated for us, saying we were a family that would do the work and that she would be thankful to work with us. This was all her own idea. Due to Hayes' speech therapists' diligence, this lady is taking us as clients.  She addresses the reason for the behavior and changes it THROUGH RELATIONSHIP. 

All other therapists I've encountered encourage use of some sort of reward chart, where behavior is only a trade off for the dangling carrot, embracing the idea that an autistic person is not motivated by inherent need to please, as neurotypical children are. That system has its place and it certainly helped Walker at one point but it is time to move past that and there aren't resources for that. 

This lady, Cathy, is an OT that has been trained and practicing what is called floor time or DIR in autism circles. It is the exact same principle that is discussed in play therapies for children with trauma issues. 
The idea is playful engagement that increases the relationship and stretches rigid boundaries, while encouraging higher level thinking. One thing we worked on during the week was instead of me telling him to put his shoes on, I would just tell him it was time to go. The idea again was to get him out of fight or flight mode and into the frontal lobe that is used when you think. That was a crazy difference. Many times, telling him to put his shoes on would result in him running away screaming. This was after repeated warnings that this was coming and all the things you are supposed to do for transition. I drilled the poor therapist about implementing this change becuase I just couldn't see how it would go well but trusted her enough to do it. It's a win. Telling him 'it's time to go' has caused him to get his shoes and coat and also lookout for Hayes' needs.That's amazing! What she's telling me is working. She's moving him out of his default oppositional mode into a higher level of thinking. That has global impact on his ability to regulate himself because he is learning to react in a new way instead of the well-traveled oppositional pathways.

The second time she came we did a more involved session. She started out asking him questions she knew he could answer and let him be the expert. Then she would start a sentence and pause at a word to let him fill it in. She gave me the image that there was a piece of elastic stretching between me and Walker and I needed to do things to make sure it was still attached. She gave me the techniques to test if he was alert enough in his surroundings to hear me and recommended going to him and engaging with him if he wasn't. That idea has helped me in my interactions with all my kids. 

Anyway, Cathy used these methods to create rapport with him and establish a back and forth rhythm with him. They took turns naming numbers and counting to 100, for example. As he played, she gave him opportunities to notice something he could do to help her feel better. She commented about being sad about not having Legos to play with, sad about not having a train, etc. Each time, he scampered off excitedly, on mission to get what she needed to participate. That's working on his theory of mind, or the ability to understand how someone else might be feeling. Right now, that is underdeveloped for him. He can tell you the right answers if asked but it's not real for him. These experiences she's creating for him are changing and developing his brain and developing true empathy. As the session went on, she would push his rigid boundaries a bit and he delighted in doing what she was asking, all due to the relationship she had established. He was lit up like a Christmas tree, so excited to engage with her. Then Hayes woke up and there was an issue and Walker fell to pieces. Cathy walked him through the meltdown and it was much less intense than they normally are. She said that's very common for there to be a 'floor time glow' where the new synapses are still firing and the child is more regulated. It just takes repitition of using those synapses for that to become the default rather than going in the fight or flight area of the brain. 

Yesterday, he told me I was mean. It truly stung but I normally wouldn't have let him see how much that hurt. Remembering how she overplayed emotions for him, I let him see me cry about it. He immediately said, "Mommy, you're nice! I said you are nice!" He got it and felt remorse. I talked to him about how I appreciated him telling me I was nice and that it hurt my feelings that he said I was mean, that words have great power, especially when they are spoken by someone we love dearly. Today, he said, "Do you remember last year? When I made you sad?? You are nice." We talked more about it and I said how proud I was of him for telling me that, I knew he didn't mean it, etc. That is HUGE! He understood in his heart what he had done and felt bad for hurting me. And he had words to express it and got amazing feedback when he did. That never would have happened before. That entire episode resulted in a deeper connection.

 Another big thing....he has stopped biting his nails. He has always bitten them down to the quick, sometimes making them bleed. We have tried different things to put on them but no deterrent was effective. It was anxiety for him because he did it when he was dis-regulated. Nervous, angry. etc. I noticed today that there is a little white on his nails! Cathy has actually gotten him in a more regulated emotional state. In two sessions! That is amazing.

This was what we were waiting for. This is God's heart for us, that we experience restoration in the context of relationship with Him and it makes sense to me that it would be mirrored in our relationships with each other. I keep thinking of the scripture reference that perfect love casts out fear. So many of Walker and Caroline's issues are fear based and that holds no water in the face of perfect love. Since Tom and I are human and offer imperfect love, therapy helps us hone our skills and offer them what they need from a relationship. I do not have the belief that this is a magical solution to all issues. It's just another tool in the box. It is a badly needed  tool that uses engagement and relationship in a way that facilitates change in brain development and activity, which I think is the key to lasting and meaningful impact. 

When Walker was diagnosed with autism, I very much felt that he didn't need to be 'cured' or fixed in any way, just helped. I've changed my mind. Autism is not a part of him. It's a disability that is inhibiting him being his best self. And the next second I celebrate autism becuase of how differently Walker views the world and how special that is. So, I hate it for what it has taken and celebrate it for what it gives. All at the same time. So I don't know. I just want Walker to be the most fulfilled version of himself, whatever that looks like for him. The last few weeks, he and Harris have been playing together every chance they get. This is totally new. They haven't played together for more than a few minutes without a total breakdown. My prayer last summer was for peace in our home and it seemed totally unrealistic, especially if Walker ventured out of his room. 
It's now an answered prayer. Our home can be peaceful. All kids in it can be content in the same room. Those two in particular have played together for hours on end and are so happy! That is a huge praise to God because it looked impossible! God spoke the earth into being from nothing and He doesn't need something you see to make something that is real and we see that in our home. 

There is a book called, 'The Reason I Jump.' It's written by an autistic Japanese teenager and it's fascinating. In one chapter he answers many questions people have about autistic people. Here is one that broke my heart.

"Why do you prefer to be on your own?
I can't believe that anyone born as a human being really wants to be left all on their own. What we're anxious about is that we're causing trouble for the rest of you, or even getting on your nerves. This is why it's hard for us to stay around other people.

The truth is, we'd love to be with other people. But because things never, ever go right, we end up getting used to being alone. Whenever I overhear someone remark how much I prefer being on my own, it makes me feel desperately lonely. It's as if they're deliberately giving me the cold shoulder."

This is why I'm overjoyed that Walker and Harris can play together. I can see Walker has always wanted that and it would just fall apart so quickly.

I was listening to Susan Caine, the author of Quiet, talk about introverts. Autism is far more than that but I think it could be said that they definitely draw energy from being alone and energy is drained by being around people, which is the definition of introverted. So Walker fits the bill (as do I!) There was a study where both introverts and extroverts were given math problems with the same level of construction noise in the background. The extroverts reported the noise as minimal and performed as expected on the test. The introverts reported the noise as much louder and performed below their knowledge level on the test. Fascinating, right? 

It was a reminder to me that Walker is already working at drowning out construction level noise just to be at status quo and then I'm pushing these therapies that are designed to make him work on his weaknesses. That's intense. He is one strong little person and I am so proud of him.,

So this was all over the place but the takeaways are:
Therapy works. 
It's hard work.
God does big things.

Whoever stuck this post out to the end, high-five. 
Walker T, I owe you another round of Orange Leaf after re-capping all you have accomplished. I'm so proud of you and so thankful to be your mom!

"For the Spirit God gave us does not make us timid, but gives us power, love and self-discipline."
2 Tim 1:7