Article Courtesy: Chrissy Kelly, life with greyson + parker
I don’t need to be normal. I gave up on that a long time ago. And one day I realized normal is actually the last thing I want to be. However, I do want to feel normal… or at least my own version of normal. I like feeling safe and secure amongst the familiar routine of Life.
I guess that’s partly why I want to control everything. If I can control all the elements, then I know how to plan. I can even come up with solutions to potential problems in advance. Except it never works out that way- does it?
Today sad stopped me from feeling any version of normal. I sorted through the feelings looking to label each one. Angry. Annoyed. Concerned. Confused. Tired. Hopeful…but mainly, sad.
For me it’s so much easier to be angry. When I’m angry- I get to be angry at a person or thing on the outside of me. Angry even gives me a little bit of extra energy. But when I am sad, I am just sad. Just me and sad inside of me and there aren’t any places I can go to get away from it and nowhere to project it. So I absorb it. It’s heavy and I am left drained.
Sometimes days and even months will go by when I don’t have to think about the charts. And I start to feel normal and it feels so good.
When you have a child with developmental delays you need to know best how to assist them because no matter what their Super Power is, each one has different strengths and different needs. Professionals need to know how to best target the appropriate areas of learning for each kid. Different resources are used to get a baseline of your child’s capabilities, as well as tasks and concepts that need extra work. Many professionals use HELP- Hawaii Early Learning Profile. It’s a checklist containing 685 skills and behaviors in relation to all areas of development.
No one knows what your child is capable of more than you, so you must answer many questions about your child’s development. I have most of the answers memorized.
You first have to go through a round of basic questions. How was your pregnancy? Did you drink? How many weeks did you carry? How was your delivery? When did your child first sit up? First word? First walked? And I try to remain like a robot and answer each one without reliving the hardest time of my life. A time where Greyson’s development halted and then stood still in time. A time I was so scared my hands would often shake.
And lots of people need answers to these same questions. Speech people and Naturopath Doctors and Child Psychs and Pediatricians and Developmental Pediatricians and each new Doctor and School setting and the State Regional center and more that I can’t even remember right now. That’s why I usually don’t read books on Autism. I am sick of talking about developmental delays and the manifestations of autism. I am living them.
And each year the gap just gets bigger. What they should be doing based on their age and what they actually are doing. I thought the more work we did the smaller that gap would get- but it doesn’t work that way. Because the list of what he shouldbe doing constantly grows- because typical children are growing and developing in fast and amazing leaps. And sometimes the gap makes me feel like Greyson is drowning, and I am standing here watching him but I can’t stop it or save him.
And Parker. Luckily he is at a different part of therapy and his life in respect to autism. His therapy is a little less rigorous right now. I try not to think about the charts. I threw my home copy of the developmental chart away when I realized Parker was on the stupid spectrum. When he gets a little closer to 3 years old he will officially be diagnosed with autism and the scars that have not yet healed yet will rip open again, and the charts will become a frequent visitor in our life for a little while again.
Today Greyson had a much needed evaluation with an Occupational Therapist, which was great, but it brought me back to the charts. Occupational Therapists help to facilitate sensory integration therapy. Research estimates that eight out of 10 children with autism have problems processing sensory input.
Some examples would be:
They can’t filter out background noise, Problems with balance, Problems with body position in space, Oversensitivity to touch and the feel of certain types of clothing: such as socks with seams, Overly sensitive to foods of a certain texture, Child won’t walk on grass barefoot
With autism, social, behavioral, or attention problems can be partly a result of these sensory challenges.
Examples of sensory integration therapy include:
Being brushed or deeply touched and massaged, Compressing elbows and knees, Swinging, Spinning, Wearing a weighted vest
Luckily, like the Speech Therapy we go to, Occupational Therapy is incidental learning–Learning disguised as play.
This is an example of a child sensory integration therapy room. This is similar to the one we were in today.
I’ve worked with so many different professionals working with Greyson. If I am present for therapy, for the most part, it is best for me to remain quiet and let the Therapist do the work. If one of the boys acts out- hits the Teacher, throws himself on the ground or cries for me- I avert eye contact so they know the Teacher is in charge and so they know I can not rescue them.
It’s still hard for me. It’s hard to watch your child struggle and turn your back. Like any Mother- I know when the boys are having a regular hard time- and when they really aren’t okay. Their cry is completely different. Sometimes they are afraid, or sad or don’t feel well. I don’t always know what’s going on- but I know when they aren’t okay and they really need me.
Parker was having a morning like that a few months ago. One of the managers on his Therapy team was over working with him and his Teacher. As I walked by the play/ABA room I heard the cry I do not ignore- the cry letting me know he was not okay. I went into the room and sat near Parker as they were singing a song for circle time. I joined in on the song… As Parker started to reach out to me the manager said, You’re making it harder on him by being in here.
Frozen. I felt like an idiot – singing. Do I let a kidless 20-something abruptly tell me to leave my room? Is it bad that I’m in here? Now I feel stupid. I don’t want to make things harder on Parker. With a face stinging from embarrassment, I got up, walked off and went into my room and cried.
Today I was watching Greyson during his Occupational Therapy Evaluation. The tall, passionate Therapist with the strong German accent was swinging him back and forth. Greyson was in heaven. The therapist then went to switch activities to another area of the room. Greyson, come over here- do you want to jump? She asked. I was afraid he didn’t understand her accent and I knew he would not want to get off the swing. I started to pick Greyson up out of the swing and she abruptly stopped me.
Do not touch him. While you are in here, you need to be like a piece of furniture in order for me to properly evaluate him. You need to pretend like you are not here.
My eyes opened wide and I was instantly quiet and scared. The accent made her sound angry. So I sat there with my hands folded in my lap, trying not to move too much when I breathed… furniture? Like a couch? ugghh…again with the feeling stupid and then feeling stupid for feeling stupid because he’s my SON and I HELP him- it’s what I do…and why didn’t you tell me this FIRST – to be furniture-like so I don’t have to feel like a jack ass now?
Here’s the deal therapists. I know I should be used to the crying and screaming and outbursts, but I’m not. My gut reaction is to feel bad and to feel like I need to help. And I usually stay out of it- at least 95% of the time, even if it means sitting on my hands and keeping my mouth shut in a tight line and humming so I don’t say anything…but sometimes I can’t, because in some moments my child needs me, he trusts me…like really needs me and averting eye contact isn’t an option then. He has to know he can depend on me.
And after her evaluation I got to know the therapist a little better. She isn’t mean- she is just abrupt and very passionate about what she does. We discussed Greyson’s development and current treatment. I let her know everything Grey does and she stopped me. I’m not sure if you have heard, but I despise ABA. It often does more harm than good.
Wow. Those are some strong sentiments. And at first I just sat there and let her explain her side to me. It felt judgemental and one sided. She said children often end up like little robots because ABA doesn’t fix the underlying problems. She said they let any random person teach the kids- and sometimes they create more bad behaviors than good. She said it’s only good for children with very low functioning autism- and not children like Greyson. Greyson is not low functioning, but he is also not high functioning. He is in the middle.
I calmly let her know that I agreed with certain aspects- sometimes I do feel like I am making Greyson into a little robot- and although sometimes he gives the right responses- he doesn’t have a clue to what he is doing or saying. I don’t want to force him into being some robotic version of a little boy. I just want to help him find Greyson. I told her that Greyson’s light is really fricking bright and no therapy could hide that. I agreed that I didn’t like that anyone can do ABA in our home. No teaching credential or degree is needed, no love for children or teaching either- most companies seem to hire anybody- we’ve had some doozies. But I told her- as you could see in your evaluation- I am hands on. If a teacher isn’t passionate and on time and engaged- if they don’t care about my boys, I ask for a new one. I get to know who is in my house. I know what programs Greyson is working on. His life is better due to ABA. He used to run into streets full of cars and he doesn’t anymore. He’s calmer and happier. That’s all due to ABA. Maybe he has only learned splinter skills -as she called them- but they are skills that are saving his life and mine.
And I left that meeting, so sad. I’m not second guessing ABA- it’s a God send. I was just sad there so many professionals say so many different things about how we should be treating our kids with autism. Sometimes it’s scary and it makes me sick. I sent Greyson away to school in the hopes he would learn- but he didn’t- and no one could give me answers to what was going on. There was very little communication. Not only did he not learn- he unlearned everything he knew up to that point. He regressed terribly. That was my only option though- You can go to xyz Autism preschool in your school district- or nothing. So many of us Mother’s are left to create the wheel all over again. Pick amongst a bevy of therpy options and hope they are the right ones. Each child is so different it’s hard to come up with a protocol, But I long for an autism community that works together with a synergy that makes sense.
And tonight I was downloading some pictures I took earlier in the week when we went to visit here…
The San Joaquin Hatchery started raising fish in 1954. The hatchery’s main role is to provide recreational fishing opportunities for the public. You can tour the plant and even feed the fish that they are growing. On our visit, I was watching the fish- mesmorized. My eye could see all the rows of fish pools all at once.
The fish go nuts, fighting against the current.
Trying their hardest to make sure they didn’t flow into the next pool in the row. It looked like it took so much energy- all that flopping and thrashing around. I wondered- why in the hell are they fighting the current so hard? Do they think they are keeping themselves alive? If they just let go all that would happen is they would flow into the next tank which is kind of exactly the same. What’s the big deal?
And then I realized something…
Okay, or at least me… Fighting like mad sometimes- fighting change with all my might…when the change is actually just a different version of exactly what I am doing now. I don’t have to use so much energy to flop about and fight the current just because I don’t know what to expect.
Just keep swimming, swimming, swimming. Dory, Finding Nemo
And something tells me that God can see us and all the pools at the same time too. He may even be up there right now, hoping we will stop flopping so hard so we can flow forward into what is waiting for us next.
So much Love,
Come fish with me on Facebook.
PS- Screw the charts.