Friday, September 20, 2013

keep swimming

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.

 photo IMG_4240.jpg


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 should be 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. 

 photo sensory-integration_zps48bce3eb.jpg


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.

 photo sense_zps1d4622ad.jpg
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...

 photo IMG_2334.jpg


 photo IMG_3865_zps5e1fca45.jpg

 photo IMG_3875_zps9ba7cf94.jpg


 photo IMG_3903_zps05d5d7a8.jpg

 photo IMG_3910_zpscd887de8.jpg


If there is magic on this planet, it is contained in water. Loren Eiseley
 photo IMG_2358.jpg

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.


 photo IMG_2341.jpg



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...

 photo IMG_3922_zpsb24ce062.jpg

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, 


Chrissy

Come fish with me on Facebook.

PS- Screw the charts. 

19 comments:

  1. Your know your child better than anyone. Remember that. The therapists are there to help and that's all. Ultimately you are the one that knows what your son needs
    Don't let them make you feel bad about anything. We all do the best that we can under the circumstances.

    ReplyDelete
  2. Just want you to know that I love your blog.

    Love your honesty, love your pics of your kids (they are both adorable but that Parker just SLAYS me!) and love your take on things.

    ReplyDelete
  3. This really struck a cord with me. My son is developmentally delayed due to prematurity. We have weekly OT sessions, and the parents aren't allowed in the room. It's scary to me, because sometimes I can hear him whining through the door, but I know they do it that way to make it easier on the therapists, kids and parents. Still, though, it's hard to sit on the other side of the door and just listen. I get tired of all of the different opinions too. He's doing great in regular preschool; he needs more therapy; he's ready for kindergarten; he needs special ed services; he seems fine to me. Ugg, sometimes the "he seems fine to me" (usually spoken by a well-meaning family member or friend) is the worst - even though they mean it as a compliment, it feels like it invalidates how hard we all work (including my son). This picture of parenthood isn't at all what I envisioned. But it's the best thing I'll ever do.

    ReplyDelete
  4. this one also made me cry. I too know that helpless feeling of not being able to rescue, I feel often like my child is my heart walking around outside my body and I cant stop him from bumping into things and hurting us both . I loved the fish..Just keep swimming- I say that so often :) and my son is 25!

    ReplyDelete
  5. I hate that some people/therapist are so against ABA....it has changed my DD, she was diagnosed at 21 months, and at almost 3 is a different kid than before, and its all due to ABA. I often feel like OT/ST are a waste of time, but my insurance pays for it, so we go....and the school system has their opinions too, like she needs a morning preschool and ABA later in the day...I am her mom, and preschool for us is an after thought, ABA will be every morning for 3 hours, and if she is up to it, preschool in the afternoon....ABA will always come first.

    I totally relate to this post, my DD had an evaluation by the developmental pediatrician this week, and I wanted to hear the words that it wasn't moderate autism (like at diagnosis) but he said even though she has hundreds of words and phrases now, her social skills are still very behind, so he would consider it moderate. Broke my heart, but like your post, we will keep it up, keep swimming, and fight for our sweet girl, and even though the gap gets wider and wider, will cheer every milestone she gets to, no matter how long or hard it will take her!

    ReplyDelete
  6. Thank you for putting your heart on the page for us. <3 I hope the sad becomes less oppressive and passes on and away with the current.

    ReplyDelete
  7. you are the expert on your child. no one knows your children better than you. and for the record, i'm an OT and NO ONE has all the answers about autism right now. i can't imagine how frustrating that must feel to parents who love their little ones more than life itself, as you do. you're right, you just keep swimming... and doing what you feel is best for you children. i have two little boys the same ages as greyson and parker and i identify with so many of the parenting struggles you write about. and also, i'm 39 and i want to get botox for my 40th birthday:) susan from pa

    ReplyDelete
  8. Chrissy,
    My heart breaks for you. You have poignantly expressed why it is so very hard to be a parent. There is no perfect guideline to follow to get your child the exact help he needs, and I hope that more and more therapists and doctors realize the emotional struggle parents go through and choose their words wisely when giving their opinions. Please stay strong and confident that you know when your children need YOU or something different. Just because it's usually a bad idea to intervene in therapy, doesn't mean it always is. You are absolutely right that sometimes your momma heart knows your kiddo needs you and even if he'd have been okay without you that particular time there's nothing wrong with expressing your fierce love for you child occasionally, when they are doing something difficult. I don't think it wil erase all the hard work and successes they've had but remind them that you are always there, always caring, always cheering them on. I can't imagine how tough it is to make decisions on what therapy to do and how much at such young ages, but do trust your gut because autism therapy is still in its infancy and the medical world will be wrong sometimes.
    I struggle continually with how to best help my children without making them miserable. There's cost to consider, time, efficacy, side effects. It's overwhelming! I want them to develop all the skills they need to lead awesome happy lives, but I want them to be kids in the meantime too. I'm trying to remember that showing my love for them continually and teaching them that failure and mistakes are just steps on the road of progress are the most important things. With that we will just keep trying and even with failures like therapies and ideas that didn't help we are making progress even if it's just knowing what doesn't work for us. My daughter often panics at the thought of starting homework and we have an hour of anxiety hysteria of epic proportions in which she can only produce gibberish which makes Mon-Thurs torturous for the whole family. Just last night she tried a knew way of doing homework that was her idea, and she was able to say "That didn't work at all. I was calm but so distracted that I kept forgetting to work and got almost nothing done." I could tell she was a little down about it so I said, "So we know that method won't work for you and now you can try a new idea next time." She actually felt good about herself at that point because she realized she'd tried and learned something useful about what doesn't help her. It's of course frustrating to still be working on this same problem of how not to have a panic attack when starting homework, but I chose last night to focus on the positive of being proactive and trying out a new idea even if it didn't get perfect results.

    ReplyDelete
  9. Once again, you have put into words pretty much exactly how I feel. Thank you. I feel how small the therapists and teachers can make you feel. After talking with them or being chastised by one of them, i often feel like I have done something wrong to make things worse. I beat myself up. Feel the anger. Hurt. Sad. Usually, I can turn it around and keep swimming.

    I also related well to the first comment about friend's comments stinging the most and/or making you feel like no one knows how hard you have worked to get to this point and how hard you will have to keep working to make it to the next point. As i was driving home at 8:30 pm last night from Cognitive Behavior Therapy (CBT) for my 8 year old, 3 year old in tow, a friend called and commented how late it was. "Yes, the hours are endless," i said and thought how clueless friends are to my real life. All so rewarding though, especially when something clicks for my little ones, then I feel so rewarded.

    I have learned and re-learned that WE are the ones who know our littles best. Don't forget that, friend. Have a great weekend, Kristen @ One in 1 Hundred

    ReplyDelete
  10. My sentiments this week - exactly! Thank you for this. <3

    ReplyDelete
  11. Hi love. I took my lil to our first OT session today. Well, his first since he was an infant. He had PT & OT right @ 11 months, but I wasn't crazy about the OT therapist, so we took a break. At the meet & greet a few weeks ago, my son met the therapist. So, this week once he went with her, I went to the coffee shop downstairs & sat for @ 25 minutes. I can't be around when my boy struggles, either. They just started serving pumpkin spice lattes, so not a bad gig for me. I was never at SAHM, & it occurred to me early on that my son has a life that doesn't involve me, even as an infant. He knows people I don't know, does things I don't know about. Even now at 4 he has a life outside of me and needs to know how to best function in it. I like the comment above, where Amy said - "I feel often like my child is my heart walking around outside my body" that is the best description.
    You know me well enough to know I'm not saying this is how you should feel, just that this is how I deal with my stuff.
    This parenting thing is hard. I must have missed that part on the pamphlet. Thanks for being here.
    I hope the sad is ebbing. I wish you much love & sunshine, sweet momma. Jennifer

    ReplyDelete
  12. My son has a borderline "inconclusive" diagnosis at this point, and in our evals with the Dr, he talked about the relationship between ABA, OT and Floortime. The thing is, they are all trying to do the same thing - help your child. Sometimes the methodologies do conflict, but they can be aligned with good communication. That's where you come in - I'm sure you'll figure it all out!

    ReplyDelete
  13. I feel exactly like you. I actually enjoy the anger I feel at insurance companies for making me go through all ofnthe evaluations every 6 months. Like I really need to see that my 4 year old really is developmentally a 18onth old every 6 months. It just seems cruel. I will say I also do a lot of ABA therapy and I pair it with a lot of floortime therapy. I think the mix of structure and of just having fun and working on engaging works really great for us. Just wanted to share. Most people think they don't mix but I really think they are awesome together and the beat part is you can do the floortime therapy yourself it some 30 minute blocks. I took a parents training class for a weekend and it was awesome. I also have a few people come over and play a few times a week just so we get used to being around other people. I agree I found school actually made my son lose skills not gain them. As far as therapist, I really believe God gives you the Mom intuition for a reason. I hate hearing my son cry during therapy, but I can totally tell when it's frustration or he really needs me. I chose to trust my instincts. I have explained this to my therapist and really they have been great about letting me interrupt when I feel he needs me. I have no clue if what I am doing is right, but it makes me feel like I am doing the right thing and at this point that is the best I can do. Just wanted to say you are not alone and share some of my strategies that I have been using lately to help. Your right we are all just doing the best we can. It's funny because I repeat the just keep swimming in my head from Nemo on days that I want to pull my hair out

    ReplyDelete
  14. Moving into fall this year was so hard for me. I decided last week that there is no normal, it doesn't exist, and striving for it just makes me crazy. So I decided to handle every day as graciously as possible, no matter what that day brings, crawl into bed at night, call it good, and get up the next morning to do it again. Weirdly enough, it has helped!
    Thanks for your posts - Melia

    ReplyDelete
  15. Your post describes exactly how I feel! Working so hard thinking he'll close the gap, only to see the gap widen as he gets older. But it's your post script that I love the most. "Screw the charts!" I'm going to repeat that in my head at every evaluation from now on. It will help keep me sane and make me smile.

    Thank you for writing about the joy and pain you experience...it mirrors mine in so many ways.

    And btw, wonderful pictures!

    ReplyDelete
  16. This post really touched me. Thank you.

    ReplyDelete
  17. <3 We are all on a journey! You are very brave and truthful and that is wonderful! Our family has found the GAPS diet very helpful with our son who is on the autism spectrum. I have also personally felt that my feelings about having an autistic son have been revolutionized by the insights I have gained from Suzy Miller. Check out her podcast Pure Presence: All About The Kids as well as her website, suzymiller.com if you are curious about the spiritual aspect of children who present with autism - it doesn't take away from the challenges, but her understanding, which resonates as truth with me, returns the "special" to its true meaning regarding kids with autism. Hugs!

    ReplyDelete