Good-bye to another year...of school!

As I begin this post, I realize how many others I have started and never finished in the last few months.

This one will be different...

I really can't believe it's already here. Summer Vacation.

School is out, again, for another summer break. Another grade is completed and this time, it was a year full of good things. Both the boys had amazing years, made friends and met goals. I was thoroughly impressed with progress reports and IEP meetings but never found the time to shout from the hilltops, like I would have not-so-long ago.

I'll start with Phoenix.

At the beginning of the year, we were still about a year behind in some areas, with many of our goals from the previous year still "In Progress". When I met with his teacher for his IEP meeting, a wave of change had rolled through.

We had met goals and were making new ones.
Speech had improved, greatly.
Concepts were sinking in and being understood.
He was finding traction and gaining speed.

It felt good to hear that after such a long struggle, we were finally in a good place. We were finally getting him to where he needs to be for his age. Last week when I got his final progress report, I cried.

Goal after goal read "Met Standards" and while we may still be a year behind in a few places, quite a few of the standards met this year were second grade standards. SECOND GRADE STANDARDS.

It blows my mind how unphased he is, how persistent and determined he is. He gets discouraged, yes. His confidence is still less than I would like. He still struggles a lot in everyday life but we are getting somewhere. For that, I am beyond thankful & grateful.

I am in awe of this little being I have helped to create and mold. He has had so many challenges; even though they seem small, they have had a big impact on him and they still would be if nothing had been done to help him find his way. Karate has helped him blossom more and come out of his shell, almost as if he's becoming more comfortable in his own skin; almost as if he's beginning to learn to love himself.

It's incredible and wonderful and awesome.

Paxton, on the other hand, has never stopped blowing my mind.

I was so worried about him, convinced he was going to have the same problems Phoenix did. I got him evaluated and did speech therapy at Sac State for a semester, went to the school district and got him an IEP, got him into preschool with his IEP. He had pull-out speech services on campus twice a week and I thought about another semester at Sac State, then the baby cried and I was thrusted back to reality with the conclusion that maybe I wasn't capable of doing another semester at Sac State.

At this point, he's already doing better than Phoenix was at the same age and is flying through things that tripped Phoenix up like basic concepts, letter recognition and sounds, so I really don't feel all that guilty. Paxton also doesn't have the inner ear problem Phoenix does, so that has to help too (with my Mom-guilt and his progress in speech).

In just this first year of preschool he's made phenomenal progress and when I say my mind is blown, I'm not exaggerating. At the beginning of this year, he knew a few letters; like the letters to his name. When I went to his parent/teacher meeting in May, his teacher confided that he can identify all 26 letters, upper and lower case, and the sounds they make, that he can spell and, this blew her mind too, that he can read.

Oh yes. He can read.

He still has speech issues, to be clear. He jumbles words together when he's trying to speak in sentences (cluster reduction) or leaves the last sound of words off (final consonant deletion) but these are normal, common processing errors for kids learning to speak and he's not that far behind. Most speech processing errors correct themselves by age 4 and Paxton's fifth birthday is just a few months away so I'm fairly confident these processes will resolve themselves if we just keep doing speech therapy at school and working on speech at home.

It gives me hope that Korben might, possibly, not have any speech issues at all but that's a bridge I'll cross when I come to it. For now, I'm going to take the progress that's been made, the goals that have been met, the leaps and bounds that have been taken and enjoy them for what the are: signs that Jay & I are doing what we need to do for our boys, signs that our boys are healthy and happy and learning and growing and thriving. I'm going to sit back and look at my boys and be proud. Of them, for getting to where they are, and of myself, for helping to get them there.

Seeing them succeed is the greatest proof that I am not a complete and utter failure and that's something I'm clinging to desperately right now.

A Place for Phoenix

At the beginning of March, I quickly updated you guys with news that I was heading to Phoenix's annual Individualized Education Plan (better known as an IEP) and got the chance to say all went well but instead of sitting down to do a full-on report, I got home and left with Jay to go to work. His grandma watched the kids til his mom got off and then she took over but we were gone in Rio Linda for hours.

Well, I'm finally here to report that Phoenix is doing excellent in his current placement and the plan is to keep him in the same classroom next year, which is great. His classroom is 1st-3rd grade so he will have some friends sticking around for another year and he'll get to make new friends too. His teacher was very happy to report on the progress he has made and I loved hearing about it. IEP meetings can be dreadful and are rarely pleasant so when they are pleasant, you bask in it.

I realize I'm kind of just jumping in here; some of you might not be familiar with Phoenix's story or the journey he's had but bear with me. If you want to read about what's lead us here, you can read this & this.

To give a little background: Last year, after a half-year in a preschool class for kids with speech issues, Phoenix was placed in a general education classroom for Kindergarten.

It did not go well.

He fell to the bottom of the class academically and had trouble socially & behaviorally. He started acting out in class and at home but with the help of his SLP at the time and a LOT of persistence on my part, we got him placed into a Communicatively-Handicapped class for first grade.

Since he's been in this new classroom, he has soared and excelled in amazing ways. His speech and comprehension have improved significantly and he is approaching grade level or is at grade level in a lot of areas where he was 2-3 years behind,  just last year. I'm sure another semester of speech therapy at Sac State didn't hurt either but I'm sure having him in a classroom where all the students have speech issues and the curriculum is based on speech and language development has been the driving force behind his recent success.

With his teacher's use of interventions like SIPPS (Systematic Instruction in Phoneme Awarenss and Phonics and Sight Words), Expanding Expression Tools (EET) and a few others, Phoenix has mastered ALL the letter sounds and his test average for sight words is 89% and in a first trimester reading test, he read 26 words a minute with 100% accuracy. He is learning how to arc a story (create a beginning, middle and end); he correctly labels the elements of the arc and given pictures, he can sequence the events of the story in the proper order. His vocabulary is expanding and he's starting to use more verbs like "proud", instead of "happy".

At the beginning of the year, Phoenix couldn't identify all the consonants or the sounds of the letters and could only read six sight words; now, at the end of the second trimester, he can read 66 out of 75 high frequency words automatically. He's performing at the first grade level in Language Arts, at a slower pace, and the same goes for math, where he's averaging test scores of 95%. He can tell time to the nearest hour and half hour and will independently count to 109; when given a a blank hundreds chart, he writes and counts to 200. He has learned how to capitalize and independently writes three consecutive sentences. He uses temporary spelling, is starting to use phonetic spelling and the spelling errors he makes imitate his speech issues.

He still has a long way to go. He continues to make errors in word order (syntax), suffixes/word endings (morphology) and grammar (word choice) and I think this is part of the auditory processing issues. It's hard for him to retain, organize and recall information he's received verbally and well, speech has a LOT to do with verbal information. I know he hears how the rest of us form sentences and organize our thoughts, he's just not capable of doing that. Yet.

I know it's coming. He's making progress much faster now than he has in the last few years, which is wonderful. My hope was to be able to integrate him into a Gen. Ed. class for 4th grade and if everything continues the way it is, that should totally be possible.

It feels so good to know he is finally on his way; to be able to see him blossoming and growing, instead of struggling and withdrawn. He is such an amazing kid and it is so awesome to see his confidence in himself grow as he overcomes the challenges that have held him back for so long now. For me, it is beyond gratifying.

His journey isn't over yet but we are well on our way. Every day is a step in the right direction and with each step, he is making more progress and building more self-confidence. He has found a place that fits him, a place where he can grow at his own speed; where he is nurtured and challenged at the same time, by people who truly care for him & want him to succeed. He's found a place where he has stability, friends and is accepted for who he is and I'm not sure which one of us is happier.

The Second Battle

When you have one child with a certain set of problems, you become hyper-aware when a second develops the same set of problems...

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