Uncertainty

As a Mom, I think the most important job that I have is to anticipate my children's needs. It started when they were just newborns, when I would write down their feeding times in an attempt to understand their nursing schedules. When they would teethe and cut new molars, I would prepare myself with Orajel. When we head to the playground, I pack a bag full of supplies, including band-aids, juice boxes, dryer sheets (for those staticky slides), and sunscreen. It's my job as Christian and Lily's Mom to know exactly what they'll need and to give it them.

Christian is such a bright and talented little boy. I know every parent thinks their child is special. But my Christian...he IS SPECIAL. He has a twinkle, a curiosity, and such resilience. He is courageous. He has defied the odds and really amazes us everyday. So what he is *supposed* to fit into as an oral/deaf child, he often doesn't. At least, right now.

So what do you do when you have no crystal ball? What do you do when you really can't anticipate your child's needs? I know I'm supposed to just roll with the punches, but I just can't. Every moment of every day for Christian is important for his listening and speaking skills. Every moment matters.

It's all about foundation right now for Christian. These first years after implantation are critical. We're well on our way to achieving our family goal of Christian heading to either our parish Kindergarten or our home public school kindergarten. But, we still have work to do over these next two years that he'll be in preschool.

It's my job to know just what he'll need to succeed. And right now, I am struggling.

I'm praying for guidance. I'm praying for clarity. And I'm praying that whatever I chose for my amazing little boy, will be the right choice.

Preschool Visits

Last week I started my visits to our area preschools to prepare for the very real possibility that we will not be returning to Christian's current school. In addition to the anxiety surrounding that whole situation, I also have mixed feelings. Some may say that looking at Christian's test scores, that he's completely ready. Yes, he may be ready, but finding schools with the facilities and programs that can help him continue on this path is very challenging. Christian's school gives Christian all the tools he needs to succeed, with a program that is designed to maximize his strengths. It's going to be very hard to leave, especially when I know that the more time he does spend there, the more prepared he will be to enter Kindergarten in our neighborhood school.

When researching schools, I've been looking for a program that will provide structure and help Christian with transitions. I'm looking for programs that are at least 4 days, and that have a class size of 14 or smaller. Of course, I'm also looking for programs that are housed in facilities that are conducive to learning with a hearing loss, or at least with teachers who can help Christian work with the acoustics that are there. I also have been looking at programs that are close to our home, and where many of his neighborhood friends (and our family friends) have sent their children. And, one of the biggest factors when researching programs is the cost. The primary reason we are even looking at schools is the cost of Christian's current school. We just can't continue to pay over 1,500 a month for his schooling. We have to look at our family as whole, and the stress of this immense financial responsibility is just overwhelming. Our family has suffered, as well as our marriage. Unless we receive another grant, we won't be able to attend next year.

After a couple of dud visits, I visited a program that many of our dear family friends have sent their children to. It is just about 10 minutes from our house. While it only has a 3 day program for 3s (Christian will be placed in a 3s classroom next fall thanks to his February birthday), the class sizes are perfect and I was so impressed with the classrooms. Most of all, I was impressed with the school's willingness to work with Christian. They were very open to some of my concerns, like pre-teaching Christian in the morning, preferential seating, and even modifying the classroom to help with background noise. I know that school is home to good families, and I know that the teachers will do their best to help Christian succeed. It really does seem like a good option. I just need to find a supplemental program for perhaps on a Tuesday or Thursday (or maybe both) that can compliment this school.

I have one additional school that we are looking at that I would like to visit. My goal is to have a program identified as soon as possible. We probably won't know about grants or more financial aid at Christian's current school until January.

ISO: Crystal Ball

One thing I'm learning about our journey to next year's preschool placement is that it is dependent on so many different variables. I feel like we are caught in the middle of two worlds and I am struggling to understand what exactly is the best place for Christian. This whole process has also brought me back to the reality that Christian is indeed deaf, and despite his amazing progress and language skills, his disability has the very real possibility to impact him academically, socially, and emotionally.

Our family goal has always been for Christian to start his Kindergarten year at our neighborhood school. I've always looked at this goal, and then decided to work backwards and take the steps that I would need to get there. Every decision that we have made as a family regarding Christian's hearing loss has had this goal in mind. All of these decisions have been crystal clear and easy to make, from our decision to implant, our family communication strategy, and of course placing Christian in the program at the school he currently attends. Now, this decision for next year's placement is my greatest unknown. We have been in this protected bubble while attending Christian's current school. While a mainstream environment with typically hearing children making up 85% of the school's population, Christian has also had access to an audiologist on-site, SLPs in the classroom, and of course being in an academic environment that focuses on language and literacy. Knowing that we are not going back next year is terrifying to me. What will we do?

I have a list of about 5 neighborhood preschool programs in our area that we will visit and look into. 3 are parish based schools, one is a private learning center, and the other is an outdoor based program. The only thing they all have in common is that they are MUCH less expensive than our current placement. Some are co-ops, some are not. Some are play based, some are more academic. Some have great facilities, but so-so teachers, and others have fabulous teachers, but horrible facilities. As far as I know, Christian will be the only child with hearing loss in any of these programs. He will not have access to SLPs. There is no audiological support. Some of these classrooms have HORRIBLE acoustics.

Then, there is the county preschool option. Which, I am not excited about, nor do I think it is a good fit for Christian...as of now. I want Christian to be educated with his typically hearing peers, and the county program segregates the hearing loss children into their own preschool classes. While different modalities are taught in different classes (oral kids in one group, TC in another, Cued in another, ASL....), these kids don't even get to interact with hearing children during recess. The last thing I want is Christian ONLY with kids with hearing loss. However, I know that the teachers in the classroom are experts in hearing loss, and that Christian will have access to SLPs in that school. The county audiologist is housed in that building.

And in the middle of all of this, we are going through putting together our IEP with our county. Should we decide to not attend the DHOH preschool, at the minimum, we will receive an itinerant teacher....we hope. What this teacher can and cannot do is a mystery to us.

I wish I knew exactly what program would be the best fit for my little guy. He IS a super star. He HAS defied all the odds and his progress is amazing. We need to place him in a program that fits his needs and will help him succeed. I just don't know what the answer to that is. Yet.

And So It Begins

It's hard to believe that just one week into school I'm already gearing up for the 2010-2011 academic year with Christian. Yes, that is not a typo. I already have next year to deal with.

The school that Christian goes to is absolutely amazing, and I wish that we could keep him there until it is time for him to go to Kindergarten. However, financially we just can't commit to another year. To put it all in perspective without getting exact details, the cost of Christian's education this year costs more than most new sedans, and more than what both Chuck and I paid for one year of our college education. And that is with the very generous grant we received from the school. Next year, tuition jumps up to be the cost of about a new Yukon. And that is with the generous grant as well. We just can't do it. While it is hard knowing that we will be leaving such a wonderful school, it is easier with Christian doing as well as he is. I firmly believe he IS ready for a typical preschool. His school has given him such a great jump start, and his language is at and above age and peer level. I KNOW he'll be ok.

I've done hours and hours of research regarding Christian's placement for next year, and have a list of about 4 schools that we are interested in applying to and visiting. I feel so fortunate to live in an area that offers so many different types of preschools. We know that Christian will do well in a program that offers small classes, a very structored environment, and a program that is more academically based. We also need to be in a program that is open to working with a child with a hearing loss, and perhaps one that will work with us with whatever we have in our IEP.

So, this week I have an entire morning dedicated to calling in to one of our top choice programs in hopes that we will even be able to apply. It's very competitve and we need to actually speak with the director to request an application and play visit.

Just one more thing on my plate...

Tooting My Kid's Horn...

Ok, I know what some of you are thinking...yes, I did attend teacher conferences this morning for my 2 year old. Yes, they totally were necessary, and yes, Christian is doing absolutely amazing. His teachers went on and on about how impressed they are with both his receptive and expressive language, and he is "wowing" them everyday. We heard about how he is blossoming socially, and how much of a joy he is in the classroom everyday. We'll get more details about his testing at our next IEP meeting, but we were told today that he is at and above age level of typically hearing peers. GO CHRISTIAN!

About 85 percent of the school's population is hearing, and the rest are kids with varying degrees of hearing loss. Chuck and I both feel it is imperative to Christian's language development and acquisition for him to be educated with hearing children. Christian's class consists of 7 hearing kids, and one other little boy with a CI. The classroom has 2 educators, including one full-time SLP (so we basically get 6 hours a week of speech therapy!!). The school has a full audiology suite and an audiologist on staff. The administrators are amazing, the teachers are so full of love and support for the children, and every single family there is committed to the academic success of their kids. I have no doubt in my mind that Christian's phenomenal progress post implantation has much to do with his time at his school. While it has been an enormous financial sacrifice, it has been more than worth it. Our game plan is to send him 5 days a week next year if the financial aid works out. At the very least, he'll attend 3 days a week.

Getting Ready for School!

We had such an amazing day yesterday.

We had the opportunity to get together with 5 other families that will be sending their children to the same school that we are sending Christian. We had 7 children in our basement, all with CIs, and 6 of the 7 were all 2 and under. It was definitely my first time seeing so many children with CIs in one place. It was also my first time as a parent that I knew I would be the only one narrating every single second of my kid's life.

In this group of kiddos, was the other little boy who will be in Christian's class (there are 7 hearing children and 2 deaf kids in the class). They immediately got along great, playing a game of Peek-a-Boo with eachother. I was so happy to get together with these parents, many of whom I've only emailed with. I desperately need to keep up with my signing, as this group of Moms were fast and furious with their fingers, and even one was Deaf and signed. This summer I have become a bit rusty...

Lucky.

I know that I have a million and one reasons to claim that our family is lucky. Our baby boy is healthy. We live in a beautiful home in a beautiful neighborhood. We have a wonderful family, we have fabulous friends, and we have a deep and strong faith.

This morning, Chuck and I were chatting, and I casually mentioned to him how we are hosting a playgroup of children with CIs from Christian's school that he'll be attending this fall. We both were just amazed on how lucky and fortunate we are to be able to have access to the best of the best for our little boy. We live in an area that has so many wonderful resources for our son. If we would have chose to send him to the Maryland School for the Deaf, it's 20 minutes away. Gallaudet University is across the state line in DC. One of the best CI centers in the country, is just up the road in Baltimore. Our wonderful preschool that we'll be sending Christian to has one of the most innovative oral/deaf programs in the country. Our Early Intervention program is fantastic, and we have an amazing support group of other parents of D/HOH and CI children.

I always reflect back at the beginning of my journey with Christian's hearing loss, when the days were so dark, and no matter how hard I tried, I couldn't find any hope or light. I wish I could've looked in a crystal ball at our future. I would've seen how happy and well our little boy was doing. I would've seen all the opportunities that we had access to. I would've seen that despite our challenges, we really are the luckiest.

Grande Skim Carmel Macchiato on the Bar!

Yeah, I'm just practicing for a new gig.

We found out that the preschool that we are completely in love with has accepted Christian into their program (I mean, come on...like they wouldn't accept my absolutely perfect child...). We also just finalized our financial aid application and sent that in. I don't think applying for the mortgage on our home or the actual closing on our house was more stressful or more involved than this. Hopefully, we'll hear back in the next couple of weeks of how much we're going to need put up for our little man to go to this amazing school. We hear that there are nice financial aid packages available to the D/HOH kiddos there, and every little bit helps. In the meantime, I researching other job opportunities, like picking up a couple more event planning clients. Although, being a barista at Starbucks is looking really tempting these days!

Preschool Tour

Ok, the subject line of this post completely freaks me out. Where has time gone? Didn't I JUST have this kid?

Yesterday, we visited a very special preschool that we are considering for Christian. We visited almost all the classrooms, met with many of the educators, and had a unique opportunity to observe kiddos JUST LIKE Christian in a very special learning environment.

In a nutshell, this school is a not-for-profit day school that offers developmentally appropriate programs for infants, toddlers, preschool and elementary aged children WITH and WITHOUT hearing loss. 85% of the children at this school are typical hearing kids, while 15% have some degree of hearing loss. What is so special about this school, is that it offers and INCLUSION environment for kids with hearing loss. For the kids with hearing loss, they have an amazing opportunity to be with their peers, who serve as language models. They have a unique partnership with our CI Center.

Chuck and I were SO impressed with the level of attention that the children with hearing loss received from the teachers. Each class has two teachers, one educator and one SLP. The classes are small, and the D/HOH kids get direct one-on-one support from the SLPs, all the while being fully integrated into the classroom. We observed several instances where the D/HOH kid needed a bit more instruction during an activity, and the SLP was RIGHT THERE assisting them. WOW.

The classrooms were literally bursting with language opportunities. And the school was designed for D/HOH kids--there are acoustic panels all over the place, sound fields in all the classrooms, and even the preschool rooms were carpeted. This place was MADE for my kid.

The school also has a FULL audiology suite, complete with a sound booth and a full-time audiologist on staff. The audiologist on staff was previously employed at Hopkins, and they are equipped to handle any and ever audiological need that we would have. Again, this place was MADE for my kid.

We are trying to keep an open mind with all of this. Our public school system here in our county has a good program, however it is a completely different approach, and we can't even compare the two. The county program segregates the D/HOH kids from the typical hearing kids. This does work for some kids. However, as Christian grows, and as his personality blossoms, we are learning that he is a very social little guy, and he absolutely benefits from the social situations around typical hearing kids. He so desperately wants to talk. I am having a hard time seeing him in a classroom without strong language models that are his peers.

So, what's the downside? Well, it all goes back to money. How are we going to come up with the money to do this for Christian? We are applying for financial aid. And, should we chose to go with this program, WE WILL MAKE IT WORK.

Now What?

I was telling some of the Margarita Mommas the other night that now that we're past the surgery, and the drama that preceded it, that I seriously am at at a loss. I've lived Christian's first 15 months (and my first 15 months as a new Mom) on edge. If I wasn't pressing doctors for answers or appointments, I was researching communication options. I was using all my free time to learn ASL, Cued Speech, and to connect with other D/HOH families. I watched countless activation videos on YouTube. I made books, binders, and flash cards. I completely immersed myself.

So, I found something else to immerse myself in: PRESCHOOL. What else was I supposed to do during this amazing downtime that we have between surgery and activation? I wasn't about ready to chill and hang out at Starbucks and go shopping at Nordies (although I have made sure to book more cocktails and scrapbooking nights as of late).

Our county has a wonderful program that starts at age 3 for D/HOH kiddos. The preschool is fantastic. However, other than a toddler group that meets twice a week with parents and our home visits, there is nothing else for Christian between 18-24 months (not counting his weekly therapy through Hopkins).I've been looking into a school that integrates both hearing and D/HOH children that partners with our CI Center as a possible resource for us and I requested some information for their 2 year old program and their therapists as well. I'm just trying to get all the information I can. And I know, I am obsessing.