Saturday, February 7, 2015

Almost Three Means BIG Changes

Dear Jayce,

It's been a while since my last post to you and only you. We've been busy, you see. Wil's been busy in his new venture that is 4K, you've been busy at daycare and with your good friend Beckett, and I've been busy working! It's definitely been a change, but I think it's been worth it for all of us. Although I really enjoyed my time home with my boys, I am loving getting back into the classroom. It's also been wonderful to see you learn and grow in your new experiences.

You love to go to Kari's house. You ask every morning as we pull out of the driveway, "Go see Beckett?" You get very angry if I tell you, "No. It's a school day", which means off to daycare you go! It's just different with friends, ya know?? Sure, you do. At Kari's house, you can play and relax and watch a Curious George episode if you feel the need. You also get to do some fun little projects and go to Story Time at the Library. You love going outside too. She takes you on wagon rides and you boys can sure make a mess of her ride-on-toys in the garage! We are so lucky that we have her and that she treats you just like you were one of her own.

School's good too. I know it's a little crazier. You've got a lot of 2/3 year olds in your classroom, which means it's pretty loud and chaotic, but you've adjusted so well. At first, you cried (for like 6 weeks straight), but we persevered and now all you need is a hug and a high five before I leave and you're good to go. You've met a lot of friends (although I don't know any of their names) and you love your teachers Miss Josie and Miss April.

The daycare has been amazing in regards to your "special needs" and have really tried hard to keep your ear on, help you on the playground if you're struggling, and yet treat you like every other kid in their class. This is so appreciated! We know you're different, they know you're different, heck, even you know you're different, but you get treated just like the other kids. You get a time-out for hitting, you're expected to sit nicely on the carpet during Group Time, you follow the same routine as all of the other kids, which means cleaning up when you don't want to and heading outside even if your boots feel yucky!

I've also been impressed with just how much you can do! One day when I went to pick you up, I found you washing your hands. You were waiting in line (holding onto the table until you could reach the sink). Then you got onto the stool, turned on the water, got yourself a pump of soap, washed your hands, turned off the water, got down off the stool, grabbed a paper towel and proceeded to walk about 5 feet to the trash can to toss it in the garbage.

I know this really isn't that big of a deal, but for you it is.

I was so surprised because I explained to your teachers how I had just started working on "self-help" skills with you at home. I said that I was feeling nervous because things that most almost-3-year-olds can do, are really hard for you because of your physical disability... How will I teach you how to use the potty independently when you can't even stand up to pull your own pants down? How will I teach you to put your coat on if you can't stand? How will you learn to put your socks on if you can't bend your legs correctly to reach your feet? And... And... And... Oh, the worries were endless.

Much to my surprise, your teachers had been working on it with you all along (teachers, they really are wonderful:) They told me that you do everything that the other kids do - hand washing, put on your own hat and one mitten (they help with the last one), wipe your own nose and through the Kleenex in the trash, etc. I realized in that moment that I wasn't alone. That from now on (since your a regular ol' preschooler these days) I'll have some support with all of this!

Speaking of preschool... It's almost time and I am over the moon excited for you!!! When you turn three, you will officially transition from the Birth to Three Connections Program of Dane County and move into the public school system. This fact is a little bitter sweet. We've worked with Birth to Three since May of 2012. We've known your speech therapist for that long as well. She's amazing. The sweetest woman ever and I can't even imagine her not being in your life. To be honest, I can't even talk about it, so I won't. Let me just move on...

The "transition" has been nothing short of intense and I must admit that although I'm super excited, I'm incredibly (INCREDIBLY) anxious about it all. A new transition means many, many evaluations, observations, home visits, forms to fill out, and conferences to be had, all centered around you - what you can and of course, what you CAN'T do.

It's hard sometimes to be reminded of all that you can't do because we try so hard to focus on what you can. We know your language skills are delayed (you've only been hearing for 20 months, of course). We also know that your gross motor skills are delayed. You cannot walk independently, well, you can, I guess, but really it's not completely independently. You prefer to walk from point A to point B and to get there fast. You cannot walk and then stop and then walk again. You cannot stand independently. You cannot kick or throw a ball, which is super frustrating for you, but that 's a story for another day. You cannot jump or skip or run.

You cannot do a lot of things that "regular" kids can do and this is hard for all of us. Again, as a family, we try to focus on how far you've come and all that you can do, but it's times like these that we are brutally reminded of just how 'different' you are.

Your Dad and I attended your first IEP meeting last Friday, February 6. This was the first day of the rest of your next 14 years in the Public School system. We will have a similar meeting every year until you are a Senior in high school and you will be re-evaluated for Special Education services every three years from now until your 18th birthday (or maybe your 21st birthday if you are not able to graduate on time).

The experience was completely surreal for this teacher Mama. I couldn't believe I was sitting in a huge Conference Room with twelve other people discussing my child with special needs. You see, I've sat in on many IEP meetings throughout my career and I knew what to expect, but it sure is different when you are discussing your child and what he needs. Your Dad and I spoke on your behalf, we answered questions and told everyone all about your strengths and our areas of concern. Your Birth to Three speech pathologist was there too (on Team Jayce) along with Miss Christi who is the CARES coordinator from Birth to Three who advocates for children who are deaf/hard of hearing. Everyone else was a member of the DeForest Area School District - there was a PT, an OT, a Speech/Language teacher, a school audiologist, a Teacher of the Deaf, the school psychologist and your future Early Childhood Teacher (Miss Jen).

After a two hour meeting, we learned that you would qualify for everything... Yep. Everything. You'll receive 60 minutes of Physical Therapy per week and you'll also be involved in a "Motor Group" that meets on Tuesday and Thursday mornings. You'll also have 60 minutes of Speech and Language each week. 40 minutes/week an Occupational Therapist will work with you primarily on your 'self-help' skills, and 90 minutes per week, you will have one-on-one therapy with a Teacher of the Deaf (TOD). The school audiologist will check on you periodically throughout the remainder of the school year (to check your "hearing equipment") and she'll be purchasing you your very own FM System (thank GOD) that you will wear during school. It is a device that is attached to your Cochlear Implant that picks up sound directly from a microphone that your teachers will wear on their shirts! You will be able to hear all of the instruction that is occurring without having to worry about or decipher through the background noise of your classroom.

Most of your "therapies" will happen during school! You will be attending Early Childhood every Tuesday, Wednesday and Thursday morning from 8:30-11:00. I think there will be about 6-8 kids in your class (all of whom have an IEP and are special ed students just like you). All of your people will come to you! On Wednesday mornings, I'll take you to school at 8:00 so that you can work one-on-one with your TOD.

Exciting stuff... But, the best part... You get to be in the same school as Wil!!!! His 4K classroom is right next door to the EC room and he's so, so excited to see you every day. He thinks that maybe sometime you two will have Gym together. We'll see!! :)

In addition to all of these changes, we'll continue with your regular therapies and appointments. Speech Therapy (Auditory Rehab Therapy, to be more specific) every week and bi-weekly Physical Therapy with your new favorite - Julie (she just loves you and you love her too). We recently had you evaluated by an OT at Middleton Rehab who agrees with me that you have significant Vestibular Dysfunction due to your hearing loss that is effecting your balance and coordination (perhaps this is why you can walk, but not stand independently). You'll begin visiting with her twice a month as well to work on your balance and coordination and we are counting down the months until you can start Hippotherapy. You are going to love, love, love riding the horses! You are number 19 on the waiting list...

Per usual, you are a very busy little boy! As the members of the IEP were requesting their time with you, we all kind of chuckled at the fact that they're going to be fighting for you. Will there be enough hours in the week to get it all done? We've been asking ourselves that for nearly 3 years! I'm sure they'll manage, just as we have.

Oh yeah, there's been one last thing that's been keeping me up at night worrying... (I don't think I've slept in 2 weeks, thankyouverymuch). After many discussions, your Physical Therapist and Developmental Pediatrician have decided that instead of the Botox injections that you get every 3-6 months to relieve the spacticity in you legs, you should try Serial Casting. The muscles in your feet & legs are very tight (waaaaay tighter than usual because you are having a major growth spurt). This is causing you to walk on your tippy toes, which is NOT the best way to walk, obviously! The serial casting will stretch your muscles 24 hours per day, which is what you need to do in order to relieve that increased muscle tone. At night time, you will wear a knee immobilizer, which will keep one leg completely straight and really give you a BIG stretch.

So, as you can imagine. I was completely terrified of this experience. For you, for me, for all involved. I thought you'd be scared to get the cast put on (I made Grandma come with for moral support for me, that's how terrified I was). I thought you'd want the cast off immediately. I thought you'd scream every night when you went to bed and refuse the leg immobilizer....

But, I was wrong. You were AMAZING!!!!!! You sat all by yourself as the orthotist put two casts around your feet and up to your knees. You came home and asked me to take your shoes off, but only once. You were content when I told you they don't come off. So, you decided to watch a movie instead. At bedtime, you like to remind me to grab your knee immobilizer, you point to it and say, "that, Mama".

Seven days later, we returned to have your blue casts removed. It was time for Round 2. Again, I was terrified. How would you handle the saw they use to remove the cast? Would you freak out when you realized you were getting ANOTHER cast put on? Oh boy, I was just not sure we could do this...

But, yet again, you were AMAZING!!!!! You watched very carefully as your cast was being removed. You giggled as the doctor cleaned your stinky feet and toes. When he asked you what color you'd like your cast to be this week, you pointed, without hesitation, to PINK! You chose pink again, even after I tried to persuade you to get red like Bucky Badger.  So, pink it was and again, you sat and watched and waited. So content. So well-behaved. So un-phased by this rather horrible experience. Sometimes I just feel so bad for you, ya know?!?! Why do you have to do these kinds of things? It's just so not fair! Thank God you can hack it, because I surely can't! You're so much stronger than me. I could've cried for you as I watched it all go down. Another day. Another procedure. Another reminder of what it means to have Cerebral Palsy.
You will have yet another Round of casts put on again in 10 days. You will wear the final cast for 12 days and then be free. The purpose of the casts are to get you to stretch the muscles in your feet and legs, so that you are off of your tippy toes when you walk. In order to walk/take a step, your foot needs to flex up at least 5 degrees to clear the ground. At the start of casting, your muscles were so tight that the doctors had to push very hard to get your foot flat (it's interesting to notice in the two pictures above how your feet look while resting - toes pointed down and in - that's normal for you, but NOT normal at all... it's the CP). After your first round of casting, the doctors were able to push your feet to 10-12 degrees, which is awesome progress!! That means the casts are working and are definitely stretching and loosening your muscles. We'll see how much more progress you make next week!

When the casting is complete, you'll continue with intensive physical therapy. We want to train your body how to walk appropriately without being on your tippy toes. It'll make walking that much easier for you. As of now, you can plan on either Botox or serial casting every 6 months for... forever? Until you stop growing? We just don't know, but we do know you'll need to do something to help relieve that tension and it's going to need to be often.

And so it goes, little man...

I'm sorry.

I wish I could take it all away.

The IEP. The meetings. The therapies. The procedures. 

The struggles. 

I wish I could take it all away. 

I so would if I could...

Unfortunately, we can't take it away, so we do what we have to do and we do it for you. I always do my best for you and I hope you always remember that. You are one amazing little boy who is so, so strong and determined. You will do great things. This is going to be such an amazing year for you. One of immense growth. I'm so excited to see you learn new things, become more confident and make new friends. Have fun, my almost-three-year-old!!! Big things await!



  1. Thanks again for sharing your life with us! You ALL amaze me! Lana

  2. Just caught up with your blog and as usual, it is fascinating touching and so uplifting!