Tuesday, March 13, 2012

Fighting the Battle to Win the War

I've been open in the past about my oldest son Phoenix & his speech delay. I've speculated for a while now that his lack of progress is due to the fact we aren't addressing the WHOLE problem. Last year, when he was at his Montessori school, he made friends with a little girl & at a play date with her, her mother introduced me to the "wonderful" world of Sensory Processing disorders. I had no idea until then, that what was happening to Phoenix might not be just a speech delay; I am forever grateful for that day, that conversation and the on-going support this family has provided us with. I left that play date with a book call Sensational Kids by Dr. Lucy Miller and a insatiable need to fill my brain with all the information I could find on sensory processing disorders. 

Most of you would be surprised to find out how many of us have sensory issues. Think about it for a minute. We all have five senses; sight, smell, hearing, taste and touch. But what if one or more of those senses isn't quite right? Maybe you don't feel light touch or can't stand to hear loud music. Maybe you're the kid who wanted to swing all day long, as high as possible. Sometimes, the brain doesn't "get" the messages our senses are sending it; there's something going on in the brain that isn't normal. It's not taking the information in the right way, not sorting it into the right places. You're not handicapped; you're definitely not dumb. You don't have ADD or ADHD. What they thought was Dyslexia, might not be. You may have a sensory processing disorder.

Crazy as it sounds, 1 in 20 kids has some form of sensory processing dysfunction and most kids diagnosed with ADD/ADHD are in fact suffering from a sensory issue. Phoenix, it turns out, is most likely dealing with an Auditory Processing Disorder (APD) called Centralized Auditory Processing Disorder (CAPD). After everything I've read, all the information I've found, other parents I've talked with, his Speech-Language Pathologist (SLP) at school (her daughter has a different form of sensory processing disorder), all his past IEPs and the good ol' Internet, it has taken me this entire year of Kindergarten to convince the district he has something more than just a Speech & Language impairment.

After being on half-days for a quarter of the year, all the behavioral problems, falling to the bottom of the class in academics and a pretty depressing assessment from the Maryjane Reese Speech, Language & Hearing Center at California State University, Sacramento (Sac State) it seems the team at school is willing to admit I may, in fact, know what I'm talking about. I don't claim to be an expert on anything -- except my kids. I will absolutely claim an expertise on them, for the time being anyways. That's the whole reason I stay at home with them; I want to know exactly what's going on & what they need. If I wasn't home right now, I can't imagine what things would be like for Phoenix...

Our last meeting didn't go very well; I left feeling mollified, not in a good way, but gave the plan we'd agreed on a chance. I blogged about that here and about what lead to that meeting here. Oh, this has been such a long journey... So this time around, I came prepared to do battle. I forwarded the assessment from Sac State to his SLP, Karen, and the rest of his team; rounded up his past IEPs, this year's progress reports, work he's brought home throughout the year and my own observations; all the clinical jargon on APD, CAPD and sensory processing I could get my hands on and walked in there with "fight" in my eyes (I'd like to think I did, at least).

Can you guess what happened? I didn't even get to argue! Before I even had a chance to overwhelm them with all the information I had, all the knowledge I'd stuffed into my brain, the placement specialist I thought I'd have to fight with the hardest, says to his SLP "So you're saying you think he'd benefit most from a CH placement for first grade?" before she'd even finished her observations. I thought I was dreaming or dead. It had to be dead. This was going to be hard. I was going to have to WOW these people, convince them he needed this to thrive. Nope. Not the case. Maybe it was the semi-confrontational emails I exchanged with his newest Occupational Therapist before the meeting, maybe it was the fact all of this had been said in November, at the last meeting, maybe it was the "fight" in my eyes, whatever it was, I'm more than thankful for it. 

This is one of the few times I've felt like I truly have a team working with me to help Phoenix. His SLP has always been on my side and it felt like this time, she went the extra mile. His teacher even said the right things and was actually a bigger help than I thought she'd be. I think all my activism has made a world of difference in her attitude towards all this. She admitted she doesn't know much about sensory processing disorders but agreed that he did have the characteristics of a child with APD when she heard them. The OT agreed a sensory diet isn't appropriate for the CAPD but other auditory-based OT could be helpful.

On top of all this, we're going to a hearing specialist to address a Type B/Type C tympanometry, we're also going to get an assessment for CAPD done at Sac State next semester and Phoenix is going to start a CAPD clinic on the 27th; he'll have two 50-minute sessions a week, for six weeks. I think I might even have a better time with sensory help from his pediatrician after the hearing test she did showed a Type C tympanometry; she actually volunteered the word "sensory" and said his ears could be causing problems for him. Phoenix has passed at least six hearing tests in half that many years, always on the default that he reacted, but not always at the right times. It took the tympanometry at Sac State to find this problem. Now that we've found it, we may be able to say the speech delay is part of an auditory processing disorder and that of course, means we have an answer. 

I'm not counting my eggs before they hatch, even though I've completely convinced myself it IS an auditory processing disorder. Honestly, I'm just ecstatic that he's going to be in a class that's going to help him grow his communication skills next year. First grade is so crucial to a child; I want to make sure he has every tool he needs these first few years, so he can succeed and be happy in school, for as many years as is humanly possible. He won't be going to the school closest to us but the school he's going to is close & it's supposed to be a really good school. 

I'm debating on whether or not I should let him take the bus next year; I know he would love it but I don't know if I would. I like our to and from routines...He's also going to go to extended year again this summer at the same school he went to last year, maybe even with the same teacher. He'll still get pulled out for speech in the new CH class so they can make sure to address the articulation issues he has. He is doing well in his Kindergarten class, in most areas that don't deal with verbal communication; he's making friends, in his own way, getting them to help him write words and 'label' his pictures. 

In a way, I'm glad he'll finish out the year in this class; it was sort of a testing year. How far could he get when pushed to age level? How much is he really lacking? What seems to be behind his failing academics? He'll get to stay with the friends he's managed to make this year for a few more months & we'll get to see how much farther he can go in a regular classroom setting before going to the CH class. My hope is he'll only need the CH class setting for a few years; maybe by fourth or fifth grade, he'll be able to go back to a "normal" class and thrive. I just want to make sure he can do all that, as soon as possible. The kid has an amazing amount of potential; he's friendly, happy, curious and so, so funny. I want to nourish that. I want to see him able to express himself freely, sooner rather than later.

I'm so excited for him. I'm so proud of him. It's hard to remember, every day, that he is dealing with something so difficult. He copes so well & has adapted in so many different ways. I just have to remind myself every now & then how special, how amazing he really is. Knowing he's doing as well as he is, with the handicap he has, helps give me the strength I need to stay calm, rational and above all, patient. I was in no way ready for parenting to be this hard but I gladly accept the challenge. Seeing Phoenix succeed and overcome all these obstacles motivates me to be the best mom I can be for him because he deserves it. Part of me hopes he'll thank me for all of this one day; the other part of me hopes he will never know it wasn't exactly what I should have done. 

This is easily the hardest, most rewarding thing I have ever done and I wouldn't change it for anything in the world. Thanks for sharing this journey with me. It's still in progress and will be for many years, I feel. Please leave comments or questions if you have them. I truly appreciate all feedback & readership ;) you guys help make this the therapy it is <3

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