Thursday, January 28, 2010

Busy Bees

Since we've moved I have been busy making the new house our home, but just as important, getting my kids settled and acclimated to their new life here in Ohio. Both of Aiden's older siblings are so well adjusted and I couldn't be prouder of them. Of course, neither of them wanted to leave their friends in Maryland, but once we hit the road, they didn't say much else about it. Since we've been here, there's been nothing but happy faces (well, for the most part anyway)! They both love their new school and came home the first day excited to go back. I too, was very impressed with the schools, as they're much smaller and I could tell just walking in them that my child wasn't just a number.

Ryan is easy. Get him signed up for school, talk with the counselor on how he needs to be placed in advanced classes, but watched closely because he has "bright but lazy" syndrome, get him signed up for spring baseball, take him out to explore the woods, set up his XBox 360 and stereo and he's ready to go.

Kailyn too, lead her to friends to play with and she's happy as can be. Her school called me immediately to set up a meeting to discuss her 504 plan. They had the school psychologist there along with everyone else and we discussed my concerns about her having a possible auditory processing disorder (which, like hearing loss, can mimic ADD/ADHD). They tested her that next week and we're just waiting on results. I also told them about Aiden having LVAS and how Kailyn tested at 40db at one point (which ended up being due to fluid) so the speech pathologist set up for her hearing to be tested every couple of months. They devised their own success plan for her, on top of the IEP, and she's been doing wonderfully! I'm in the process now of finding her a good gymnastics class and Girl Scouts troop.

Then there's Aiden. I'm shouting out a HUGE THANK YOU to Drew's mom and Allison's mom for leading me in the right direction way before we even moved here. They led me to the "good" counties and steered me clear of the ones we wouldn't want to be in. They sent me audiologist names, preschools to check out, the low down on therapists etc. I couldn't have asked for any better "relocation specialists"! And boy were they right. This county provides an Early Intervention (EI) program like I've never seen before. Until Aiden reaches the age of three, he will be provided services through Ohio's Help Me Grow program, our county's EI program, and the Columbus Hearing Impaired Program (C.H.I.P.). There's so much to get a hold of, and I don't completely understand it all yet, but here's the low down of what I get so far.

The EI program through the county has MANY opportunities for us to make good use of our tax dollars. Aiden has been qualified to receive Occupational Therapy, Physical Therapy, and of course, speech therapy. The wonderful thing about this program is they contract out with companies or individuals who provide these therapies within the communities. This means I get to choose who Aiden sees and if for some reason I don't have warm and fuzzies about it, I can choose someplace else. There's also the option of having someone come into my home OR going to an actual location. I love this because I'd rather bring Aiden to sessions where he can "play" on all the fun equipment, which gets him engaged at such a higher level. This is outside of any private services I choose to pay for through our insurance.

In addition to our therapies, the program also provides us with an additional budget dollars to use towards "other" activities that would benefit Aiden. For example, I could use these funds for a swimming or gymnastics class, music therapy, additional therapy sessions, playgroups, etc. I believe I also get funding to help pay for CI equipment, hearing loss conferences etc. I'm in awe. Every county should have this. We are checking out a music therapy class next week with We Joy Sing.

The CHIP program is a part of the Columbus Public School District, but provides services for over 35 districts, servicing over 200 hard of hearing or deaf children ages 0 to 21. Through this program we are provided a teacher of the deaf (TOD). We met with our new TOD for the first time this week and I was just amazed. She had Aiden laughing and immersed in language within the first five minutes. We spent a whole two hours with her getting to know each other and learning each other's expectations. We only get to see her once a month, but she will always send home a couple pages of homework and activities to go along with it! You know I absolutely LOVE THIS! This program also hosts a toddler play group once a week where the parent(s) meet in one room and the toddlers play and do activities in another for a whole hour and a half.

Being an auditory verbal family, Aiden's daddy and I knew from the get go we wanted a strong auditory verbal therapist (AVT). I called our wonderful AVT from Texas, Miss Becky, to help us out with referrals. She got us in touch with a well respected AV therapist (and former audiologist) from the Cleveland Clinic whom we are VERY excited to see. He too had Aiden laughing within minutes of stepping foot in the door. Even though it's about a two hour drive, I know it will be well worth it and more than anything, get us back on track. We will see him two times a month.

After leaving The River School, my biggest worry has been Aiden not having the social interactions with hearing and deaf peers. His hearing peers at the school were huge language models and he was starting to thrive in a classroom environment - away from mom's side. He was over the whole separation anxiety and even started saying his CI buddy Ben's name. I believe kids learn best from their peers (oh, and the pretty much private SLP he had in the class was a huge bonus too) and leaving this school was the one thing I hated leaving behind. But I'm finding out with the resources here, we'll be able to fill this void without breaking our budget.

I have also scheduled our first audiology appointment AND our first appointment to meet the CI surgeon/ENT in this area. The audiologist we're going to see has come very highly recommended from Drew's mom, our audiologist at Hopkins, and my amazing SIL, who is a TOD here in Ohio.

So our schedule is filling up fast. He'll have OT or PT one time a week (rotating between the two), we'll have a toddler play group once a week, music therapy once a week, and the funny thing is, we'll only have outside auditory therapy three times a month ... well, that doesn't include all the "play" time with mom at home everyday!

Sunday, January 24, 2010

In Loving Memory

I can't believe it's been two years today
since I had to say goodbye to my dad after a long battle with dementia.
Being his main caregiver, it was very hard after his passing to get past the struggles he had and to remember him Pre-horrible-disease.

It gets a little easier, bit by bit, as time passes. Most of my dreams of him have been with him sick, but last night, he was well ...
he was "my dad" ... it was good.

So here's to you dad and to remembering ...

how you pushed your first grandbaby in the "hospital bassinet"
all over the hospital, then went on a mission to buy one
because Ryan "loved it so much and needed one at home".

how much you LOVED Christmas and handing out the presents, one by one.
how you tickled us as kids until we screamed out with laughter, "I love you dad!"

how your grandkids automatically knew the answer to your question, "Who's the man?" and would run away laughing knowing they were about to be tickled.

how you always said to us kids, "watch this" with a sly smile on your face as you yelled for mom, "Hey Red", knowing how much it got her goat.

how you loved music and always sang out loud as you played the drums on anything in sight. I hear songs still today and can hear you belting it out.

how you wrote your own poem to us in every card you gave.

how you always made us give you a kiss before we went ANYWHERE ... even if it was just down the road to the store, and always said, "Be careful, I love you" before we left. OR even better ...

how you made me call you when I got "there" - each.and.every.time I went out of town - even when I was in my 30's.

how dedicated you were to your "men", your country, and how you loved being a soldier and leading your troops.

how you taught me to play poker by the time I was three ... you said it was for my math skills, I think it was so you could practice. ; )

how you threatened every guy I dated, calmly telling them how you had guns and weren't afraid to use them.

oh how you loved your grandkids ... your Partner and your KK ... they became your life and you were there's ... and I know you're laughing in Heaven as you watch Aiden from above, as he's hell on wheels and I can just hear you chuckling as you say, "Paybacks are hell", even though I was the good child.

how even when I was married and lived at home while my husband was in Korea, I still had a curfew earlier than my brother, who was in high school, and you'd wait up until I got home.

how you danced - being silly or not ... I remember this throughout my life ... as a kid, as a teenager, as a mother. and what a dancer you were. you always said you had a little "bro" in you (from your last name).

how when I drove up with my new boyfriend (and now husband) as you were outside mowing the "back 40" in a SPEEDO and 1970 like HEADPHONES. You said you were getting a tan.

how when mom and I had to head up to see grandpa right after Christmas you were nice enough to water the plants, even though they were fake.

how when we got home from that same trip you complained what a bitch it was to take down the Christmas tree. What you didn't realize was that all you had to do was fold the limbs up, not pull out one by one with pliers. Ya, the fake tree was now dead.

and one of my favorites,
how you would ALWAYS say,
"I can't wait for tomorrow."
Me (or anyone), "Why?"
"Because I get better looking everyday!"
and we'd fall for it each.and.every.time.


I miss you dearly dad.

4/18/52 - 1/24/2008

Monday, January 18, 2010

Sensory Integration

I started this post before Christmas and am just getting around to finishing it. I have so much to catch up on with Aiden, but wanted to make sure this made it as part of his journal.

In December I received an email from the wonderful OT at Aiden's old school with his Occupational Therapy Score Results. Her and I had previously discussed what she observed and believed Aiden would benefit from a couple sessions of OT per week. At the time I was so busy with the holidays and our upcoming move that I pushed the email aside and let it be. I had enough going on, let alone enough of reading where my son lacked. I knew it wouldn't be that pretty, not bad, but not good, and I needed a break.

Well, after reading this post, from a very dear friend of mine back in Texas, I knew I needed to face the facts and open his OT test results. I'm glad I did.

A little history ...

Aiden has been receiving PT services from the county since he was first evaluated at three months old. He has always been behind in his gross motor skills, but seems to catch up, until it's time for that "next level" of locomotion. There has never been any concern though to get an occupational therapist involved. In fact, this past July was his six month review from our county and he tested within normal limits for all motor skills except locomotion (since, at 16 months, he still wasn't walking). I've never had concerns about his sensory integration, until after feeling I could have written this post from the same great friend, and asked his OT at his school to look at this as well.

Here is a summary of his test results (which was completed at 19 months of age and he is now 22 months):

Warning note - unless you're interested in each little boring detail, skip to the end ... I like to document all the boring stuff too, just in case it helps another parent going through similar situations, especially with the AWESOME reports we got from Aiden's school).

Gross Motor Skills
  • Aiden is functioning at the 11-month level for stationary gross motor skills and at the 11 month old level for locomotion (he was not walking at this time, but is almost running now).
  • Aiden is functioning at the 12 month level for object manipulation (ability to manipulate balls - throwing, catching, kicking - again, he's come along way since this).

Fine Motor Skills:

  • Aiden is functioning at the 14-month level for grasping skills
  • Aiden is functioning at the 15-month old level for visual-motor integration

Sensory Integration

First, a little bit of background on this. Sensory integration is the organization of sensations for use. Our senses give us information about the physical conditions of our body and the environment around us. The brain must organize all of these sensations if a person is to move, learn, and behave in a productive manner. Sensory integration refers to how a child processes and interprets sensory input such as touch, movement, visual, and auditory information in a purposeful and organized manner. When students receive inaccurate or unreliable sensory input, their ability to process the information and create responses is disrupted (Dunn, 1991)
To assess Aiden's sensory functioning, the Winnie Dunn Infant/Toddler Sensory Profile was completed by Aiden's daddy and me, along with clinical/classroom observations. There are three areas into which Aiden could fall:
  • Typical Performance - indicate typical sensory processing abilities
  • Probable Difference - indicates the child is performing between the 2nd and 16th percentile (representing 14% of the population sample).
  • Definite Difference - indicates the child is performing like a child in the lowest of 2% of the standardization sample.

And Aiden's results:

Aiden demonstrates Typical Functioning in the areas of General Processing, Visual Processing, Tactile Processing, Sensation Seeking, Sensory Sensitivity, and Threshold.

Aiden demonstrates Probable Differences in Auditory Processing (go figure), Vestibular/Proprioceptive Processing and Oral Sensory Processing.

  • Auditory Processing - hmmm ... ya, makes sense, he's deaf, it's what I work on day in and day out.
  • Vestibular/Proprioceptive Processing - In a nutshell, these two units challenge the child's ability to respond to movement and understand his/her own body when it comes to interpreting gravity and movement sensations. This can affect muscle tone, equilibrium responses, bilateral coordination, spatial perception, emotional expression, and self-stimulating behaviors. This explains a lot. Aiden is constantly seeking vestibular stimulation, which is why he is constantly on the go and has no fear of the consequences of his actions.
  • Oral Sensory Processing - Aiden has a hyposensitivity when it comes to this. He's a very messy eater, stuffs food in his mouth and pockets it in his cheeks, and we are always watching for him for what he puts in his mouth (from CI batteries cages to crayons to cat food)

Aiden demonstrates Definite Differences in Low Registration. Children with low registration fail to notice sensory stimuli in their environment; they tend to not notice what is going on around them and miss cues that might guide their behavior . It is said that children tend to appear uninterested and can have a dull or flat affect and possibly low energy levels (which is SO NOT Aiden, the boy doesn't sit still for a second!)

All this, along with the fact he's a typical, very hyper almost two year old, explains why Aiden has NO FEAR; why he climbs onto EVERYTHING (window sills, his sisters bunkbed, anything with shelves, table tops, counters etc); why he cannot sit still for even short periods of time (unless it's Elmo); why he can't focus on one activity, unless I'm sitting right next to him, and even then the activity is very short lived, which makes at home therapy VERY HARD; why he climbs up the couch and then hangs from the back of it and laughs; why he doesn't cry much when he hits his head; why he has such a high tolerance for pain.

All of these can have an effect on his receptive and expressive language as his mind is constantly working on overdrive to find the next best thing to get into. Along with this, having a high tolerance for pain can have a huge effect on a child's maps since they don't always show visible signs that it's just "too loud".

Aiden was making some wierd noises after one particular mapping session and about the same time, I read the post mentioned above. I called our audiologist and shared Aiden's OT report with her and inquired about him possibly having a high tolerance for pain. She got us in the next day and gave Aiden a "softer" program to work with and he's been doing much better ever since.

As parents to a hearing impaired child, we know all too well how stressful all the appointments, testing, and therapies throughout this journey can be. Since the day I found out Aiden was deaf, I have focused my energy on the one thing I wanted him to do the most - HEAR and SPEAK. I wasn't aware of terms like "sensory integration" and "proprioceptive processing" much less realized these could possibly be holding him back from learning just how to hear and speak.

With that said, we have a lot to focus on this new year. I feel like we're back at square one. Yes, we've come a long way since this time last year, but as we approach Aiden's first hearing birthday, I feel like we're so far behind and now have a couple more ingredients to add to our mixing pot.

Yet I look at the positives. Aiden IS hearing; he has a pretty small vocabulary, but by golly, he IS talking; and above all else, he is such a HAPPY little boy. We are in a new location, with new resources, and building a whole new team for our little monkey. I don't know the final plan yet, or what tomorrow will bring. We have a lot to learn. I do know we'll get to where we need to be when we're supposed to be there. Let's just hope it's sooner than later.

Sunday, January 3, 2010

Dear Blog ...

I promise I haven't forgotten about you, but in the midst of Christmas, then three days later packing up a Uhaul - driving to our new state - closing on a new home - and unpacking the Uhaul - all in less than 48 hours, with three kids and two cats, I have had to put you on hold.

Please understand.

PS - Oh, and better yet, Aiden has decided to play hide and seek with one of his CI's, which has gone MIA. After three days of searching, still NOTHING. We know it's somewhere in all this mess, but of course, nowhere easy. So today I get to go through TONS of packing paper STUFFED into four huge wardrobe boxes ... because I have nothing better to do.

At least I can look outside and see this.

It feels AMAZING to be home in the Midwest, MUCH closer to family, starting a new chapter in our lives, in a new year, in a new home, with a whole new journey ahead.
God is GREAT. We have SO many blessings to be thankful for.