I say "No" to football

Many of you may think I'm crazy for it; maybe even "un-American" since football seems to be near & dear to our nation's heart but hear me out.

In our house, we don't watch football. We don't follow teams or players. We got excited when the Broncos made it to the Super Bowl, until we found out the one player we felt like rooting for, was made a free agent at the end if the regular season. He wouldn't be playing in the Super Bowl & we quickly lost interest.

That's not why football is a no-go for me; I'm still working up to that. Stick with me here, folks.

Let's go back seven years or so to Phoenix's very first summer. It was great; warm, sunny and perfect as far as Oregon summers go. Jay was working & I was job hunting so Phoenix was in daycare during the day. A nice little daycare where they filled out diaper reports and shit so you felt like your kid was being properly cared for in your absence.

I found a job at a flooring store close to home but had to work Saturdays, with Wednesday and Sunday off. One normal-seeming Saturday morning, my mom called my cell phone while I was at work. Jay had dropped the baby off with her so he could go rafting with friends.

I wasn't thrilled about that and when she told me Phoenix had a bump on his head, I told her to call Jay and a round of phone tag began. Long story short, the four of us ended up in the emergency room of our local children's hospital, where Jay & I got to experience the "excitement" & "fun" of holding down our screaming, frightened baby for a CT scan.

That's when we found out that "bump" was a FUCKING SKULL FRACTURE. And the real drama started...

I will spare you the details of what happened next but it involved law enforcement, DHS and child services, 24-hour supervision for us & Phoenix, polygraphs and a big investigation that ultimately found out nothing. It ripped apart my relationship with my mom and nearly destroyed the relationship between Jay & I. It traumatized both of us beyond belief or possible explanation and created in us an intense fear for Phoenix's safety & his future.

We have never been the same since.

Phoenix is seven now and while we still carry the scars, he has no clue of what he's been through. He's active and smart and besides his speech delay, he's a pretty 'typical' kid. Which is what scares me. You can't SEE his brain; we don't know what's going on in there. We have no idea.

What does any of this have to do with football?? EVERYTHING. ABSOLUTELY EVERYTHING.

When I'm talking with other parents, other family members, and the subject of sports comes up, I am always the Odd Man Out because I am completely open & honest about the fact that I will NEVER, EVER consent to Phoenix playing football.

I get RIPPED APART and I can't stand it. Not only is it MY choice as his parent, IT COULD BE DEADLY FOR HIM. One wrong hit, one concussion, & my boy could be gone FOREVER. Do I really seem crazy for keeping him out of a sport that could kill him??

I don't think so.

You want to let your kid risk concussions and BRAIN DAMAGE, that's YOUR CHOICE. You will have to live with your decision, just like I live with mine.

And before you ask, yes, I do realize I am putting my fears first here but in this instance, I think it's the right thing to do. Sure, you can tell me I'm being a bad mom, that I'm holding him back from life. You could argue the millions of other ways he could re-injure himself or say I'm simply being overly protective & paranoid.

You are entitled to your opinion but whatever your argument is, I have some questions for you: what if I'm right and you're wrong?? What if I do let him play and he takes that one bad hit, gets that one concussion that causes bruising or swelling or bleeding?? Will you be here, in my shoes??

NO. YOU WON'T BE.

You don't stand to lose something more precious to you than your own life. You won't have to deal with the fallout. You won't have to feel the emotions. Even now, you are outside, un-involved, except for the limited view I am choosing to share with you.

I am right in the middle.

I have lived with an unhinging, nausea-inducing fear for the last seven years; every fall, every accident, every bump on the head, has caused a panic that shakes me to my core and threatens to steal my sanity. EVERY. SINGLE. ONE. I literally black out, tunnel vision. All I see is Phoenix. Is there blood? Are his eyes dilated?  Does he feel sick? Is he responding properly? Should we go to the E.R.? And Jay is even worse. For him, this is a wound that reopens with every new injury, whether it's a bump on the head or a stubbed toe. I think coming so close to losing Phoenix, and the trauma that followed, almost broke him.

Every headache Phoenix complains about has us looking sideways at each other and inevitably, I'm reaching for the phone, calling the pediatrician.

'He has a headache?' 'Yes, ma'am. A headache.' 'Just give him some ibuprofen; he'll be fine.'

Yeah, they think I'm crazy too.

Until you've experienced that most-intense level of fear -- fear for the life of your child -- you can't begin to understand the heart-stopping panic, the debilitating fear, the amount of thought that we put into every choice that involves Phoenix, his safety especially. I'm not above admitting that I breath a sigh of relief every time he decides learning to ride his bike or skateboard is "too hard" or when we just can't afford sports. I try to be encouraging because I do not want his confidence to lessen any more but deep down inside, I'm grateful I have one less thing to worry about.

He has a bike, and a helmet, and a skateboard. He doesn't use them. He  does rides the shit out of his scooter, though; with his helmet, of course. I don't want you thinking I have him swathed in bubble wrap, living in a padded room or some craziness.

I know projecting my own fears on him isn't at all fair.

I know I need to get over the fear of what could happen because YES, HE WILL GET HURT.

I know I can't avoid it.

I have to do everything I can to help him live a normal, active, life, which means making sure he does stuff like learn to ride a bike. And that he does it often. I need to let him be a kid. Playing sports is part of that and I have to let him participate; he wants to and he is more than capable. He needs to be around kids his age, doing things that don't revolve entirely around speech. He needs to be building relationships and learning how to work with others. I have to nurture him & help him grow; I am holding him back & I have to stop it.

I just don't have to let him play football.

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

My Sensational Son

My son Phoenix has been the topic of many of my posts but for those of you who haven't followed me for long or just stumbled on this post, I'll give you a little background:


Phoenix is five, going on sixteen. He's smart, funny and incredibly coordinated. He's generally a total joy to have around & even when he's having a bad day, the urge to strangle him isn't that bad. His biggest challenge has been, is and will continue to be speech. 


We don't know what's behind his speech problem but our three biggest "suspects" are his skull fracture at seven months old, Sensory Processing Disorder (SPD) and central auditory processing disorder (CAP). Obviously, the traumatic brain injury is Number One on the list and I feel strongly it could be the root of all the problems. SPD is Number Two because he exhibits so many symptoms! Lastly, his paternal uncle was diagnosed & treated for CAP so we know there's a family history there.

We've been incredibly pro-active in getting him help; he's been in some form of speech since he was two-and-a-half but progress has been painfully slow. When he started Kindergarten this year, things came to a head. We had behavior problems we've never had before; running away from teachers, hiding under tables, punching his teacher in the face. He was put on half-days and given daily "progress reports"; if he earned five smiley faces during the day, he got to stay for lunch but after six or eight weeks, he's only "earned" lunch three or four times.


I simply refuse to sit by and watch my child wither in a classroom setting that doesn't suit him or his needs so I called for an IEP. On Friday, I met with his teacher, his principal, his Speech Language Pathologist and a placement specialist from the school district to figure out a game plan. I was pleasantly surprised to find out that it wasn't Me vs. Them; it was more Us vs The Placement Specialist. She was against placing him in another class without exhausting the resources available at his school, which I am more than willing to do if it benefits Phoenix. 


We discussed the behavior problems, the possible sensory issues and decided to implement some new things into his day. Since he frequently hides under the table in the Rainbow Room, where the kids keep their coats & backpacks, we talked about letting him sit in the Reading Corner whenever he's feeling overwhelmed. The school has an Occupational Therapy room on site too so there's a possibility we could get him weekly OT and incorporate a "sensory diet" into his day. There was also talk of a Behavioralist and medication, which is a dirty word in my world.

After an hour and a half, I felt like we'd reached a good compromise: keep him where he is; give him more help, more services; follow up with outside resources (like his doctor and the speech & hearing clinic at Sacramento State); meet back in December. The only option the placement specialist was willing to do, was a class that's two years behind his current curriculum. Let me make it clear, here & now, that my son is NOT mentally handicapped; he just can't figure out how to make his mouth work properly. 


I stayed after to talk with his teacher, speech pathologist and principal. Then I stayed a little longer to talk with his speech pathologist who also happens to have a daughter with SPD. Then I stayed even longer to talk with his teacher; we decided to drop the Smiley stickers and just give his day an overall rating of "Good" or "Bad", in the hopes that he will be able to stay for lunch more often and with the idea that he needs to be working towards a full school-day. 


I'm so happy to report that our first day with this new plan was amazingly successful. Phoenix used the Reading Corner as a quiet spot instead of hiding under tables; he did all his work and didn't bother his classmates; he listen to his teacher and all the parents volunteering. He got to stay for lunch today and was very excited about playing with his friends. The weather has been CRAZY & today was super stormy so when I picked him up after lunch, everyone was watching WordWorld.  


We talked about how his day went while he put on his coat & grabbed his backpack. His day was AWESOME!, he said and as we walked ran out to the Jeep, he said "Tomorrow's gonna be awesome too, Mom." 


That's my plan, Little Man. To help you make every day AWESOME! ♥

Fishing with Dad on Father's Day 2011