We had our meeting today to determine which, if any, services Kaitlyn is eligible for and will receive. It was a full house of school administration, guidance, school psychologists, Kaitlyn’s teacher, and Amber and I.
As a group, we determined that, at this time, Kaitlyn did not need any additional services. We had a very open and honest discussion where her teacher gave her input, the principal gave her take, the school psychologists said their piece, and Amber and I shared our thoughts. Across the board, we left the meeting with the feeling that placing Kaitlyn in any additional services at this time would be detrimental to her progress and may actually cause her to regress educationally. She still needs to be monitored for social development, and we are committed to working closely with her teacher if any issues arise; Asperger’s can be tricky because aspies are rather savvy in being able to do just enough to blend in in social situations.
Like us, the school officials, are pleased with Kaitlyn’s progress so far. Her teacher cited a higher than normal level of stubbornness, which can be attributed to her mother (at least in my opinion, and this is my blog!). They were surprised to hear how hard Kaitlyn takes it when her classmates are not on green fox all the time, and the impact of not being able to participate in running club last week; for some reason, unknown even to the principal, kindergarten students were not taken to the field to participate last week…they are working on correcting it.
I am happy that we all left the door open to address services in the future should they become necessary. Amber and I both feel like the lines of communication with the school are wide open, and that they are doing exactly what is right for Kaitlyn. We cannot express how satisfied we are with Kaitlyn’s school. I even expressed to everyone in the room, but made sure my comment was directed at the principal, that we feel that Kaitlyn’s successful transition so far can be attributed in large part to her teacher taking the extra step in having us come in before the other students; I felt that it was important that it be known the impact that such a small gesture had on Kaitlyn.
So where we stand is that, at this time, Kaitlyn will not receive any additional services. If she needs them in the future, we will all get together and figure them out. The school has offered to revisit our meeting at any time.
As I mentioned yesterday, today was a big day for Kaitlyn…her first day of kindergarten! Most parents experience the apprehension of dropping their child off for the first day of kindergarten, and Amber and I were no different. We just had the added benefit of knowing that Kaitlyn does not exactly embrace change or transition very well. Routine brings comfort for our Aspie.
Kaitlyn had an excellent first day today, and far exceeded our expectations of how the morning would go. I was expecting her to be nervous and reserved when we got to the school, but when we arrived at her class, she was good to go. Her teacher asked her and the other little girl that walked in with us (sans parents) if they had anything to take out of their backpacks; they did, of course, having each brought their towel to use during their 30 minute quiet time in the afternoon (and yes, I am jealous!). She put some things in her cubby, and then sat in her chair and started to color. She was good to go…she had paper and crayons, and nothing else seemed to matter.
I am very happy to report that no tears were shed by any of us today. I am not sure what I expected on that front, but I don’t think Amber and I really looked at today as being a sad day or anything like that. It really was just another day in the adventure that is Kaitlyn’s life.
I am not, however, going to fool myself into thinking that everyday will be this great. I am prepared for those days when her Asperger’s takes complete control and the stubbornness kicks in, making for not great days. And those will come, and it will be up to Amber and I to manage her the best we can. The school will be a great partner on those days, and every day really, once we get her IEP in place (coming soon, according to the guidance counselor at the school). Day one is in the books, and it brought tremendous success.
Study after study concerning an autism diagnosis points to early intervention as being a key contributor in the overall well-being of the individual. It makes sense, because the earlier you can address anything, the greater the potential for a favorable outcome. Autism and Asperger’s are no different.
We are fortunate that Kaitlyn was diagnosed at a really young age (4), and that we were able to start the process of doing everything that we needed to do to improve her daily life. We’ve started her in Miracle League, which has given her an opportunity to play sports in a completely fun environment, and it has also forced her out of her shell; I would have never thought that she would drop me as her “buddy” as quickly as she did, but the safe, fun environment that Miracle provides has allowed her to branch out and work with a new “buddy.” We battled the school district and have won, and will be meeting with school officials next month to construct her IEP.
It is the small doors that are opened up through early intervention that are key.
I fear, however, that through a combination of cuts to education funding and a change in the criteria to diagnose ASD, many children will be overlooked or bypassed, thus not having the benefit of early intervention strategies.
The DSM-5, the psychological assessment tool critical in diagnosis a variety of disorders, including ASD/Asperger’s, is due out in 2013. In it, there will be only one category—autism. No more high functioning autism, no more Asperger’s. Individuals will have to meet a more strict set of criteria to receive a diagnosis, possibly opening the door for many to be overlooked. I am certain that Kaitlyn could fool the new criteria, but it was because of the persistence of her doctor, and the broader definition for Asperger’s that allowed us to begin our early intervention strategies. There is no telling what might have happened in school if we had not known she was wired differently. We may have thought we had a child with behaviorial problems that just did not want to listen, instead of realizing that Kaitlyn processes things differently.
Sadly, in addition to the changes to the DSM-5, education funding is being slashed across the country. I guess it is easy to manage a budget when you can take funds from educating today the same people that will run our country in the future. In Leon County alone, there will be $554.64 per student funding for the 2011-12 school year. In a class of 14-18, that translates to $7700-$10,000 less that is being spent to properly educate the students in the class.
What does all this mean to the future of early intervention? I think it means that fewer students will be receiving the strategies they need to succeed. I saw a study (which I cannot recall off the top of my head, and I seem to have lost my notes on) that said that something like 55% of children that are diagnosed with an ASD receive their early intervention strategies (occupational therapy, physical therapy, etc.) through their public school. With cuts to education, I have very little reason to think that these providers will feel the pinch, and probably first and hardest; it is almost always easiest to take from those that need it most, and since it is easy to take from education, it is probably that much easier to take from students that need additional services.
I am thankful we know about Kaitlyn’s Asperger’s, and that we found out early. No matter the fate of early intervention at public schools or the number of new diagnoses that are provided with the new DSM-5, we will be able to continue to be proactive in Kaitlyn’s treatment. No change to terminology will change the fact that Kaitlyn has Asperger’s; no cut in school funding will stop us from searching for the best possible treatments for her.
One thing is certain: by the time Kaitlyn starts kindergarten next month, she will be one of the most evaluated/observed/tested children in the school district. In our seemingly endless attempt at getting her placed in the best possible learning environment, we are faced with another round of observation/evaluation.
I’ve written numerous times about our ongoing battle with the school district, including our partial win in getting Kaitlyn to a school where we feel she will be the most successful. I’ve written about the “experts” at the school district having to do their observation (here), and how I felt that observation went (here). Since her observation by the school district in late May, we have patiently been waiting for our call to come review the results.
Finally last week, I got a phone call from the screening office. I let myself think that we were finally moving toward a conclusion, and I was wrong. Margo, the nice woman that called me, informed me that Kaitlyn required even more in-depth observation before they could make a determination. Luckily for us, they referred us to people who will have more of clue of what they are doing; we were referred to the Multidisciplinary Center at FSU. Once we finally agreed on an observation date (tomorrow), I was told that Amber and I would be receiving in the mail a pre-screening form to fill out about Kaitlyn. The form was similar to the one we filled out before our initial diagnosis, and our answers did not change. One part of the form struck both Amber and I as somewhat comical, and that was the back page that listed 300 or so words that children Kaitlyn’s age should be able to say spontaneously (for the most part); it asked that we circle the ones she knew and could recite, and left 5 blanks for any additional words. I was really not in the mood to circle the words individually, so I went ahead and circled the whole page…I hope they get the message that she has quite the expansive vocabulary.
Anyway, tomorrow is round three of observation/testing for Kaitlyn in the last few months (her initial diagnosis and the “experts” being the other two). I am not expecting any sort of groundbreaking news to come from tomorrow’s testing, at least nothing more than was in our original diagnosis back in February. My biggest fear about the testing is that they will go over the results with us and tell us that Kaitlyn will be in third grade next month. In other words, they are not going to tell us anything we don’t already know, and will hopefully affirm our original assertion that she does in fact require additional services. I think that the school district is wasting my time in an effort to get out of having to put her on an IEP or 504 plan and then be required to provide transportation for Kaitlyn to school. Maybe I am wrong about that, but in my dealings with them so far, nothing leads me to believe that I am too far off base.
Yesterday was a strange day news-wise. The news started off bad when I checked the mail during lunch. We received some mail from the CARD center at FSU, so I eagerly opened it, thinking it was a schedule of upcoming events, etc. Boy, was I wrong. The letter, from the Executive Director, outlined that their budget for the upcoming year had been slashed by 20.2%. Wow.
What this means is that the CARD centers, centers that help families like us start the process of receiving an evaluation, and offer continuing services through a variety of educational programs, will have to significantly reduce the services that are offered. This is a tremendous blow to individuals with autism and their families. A significant reason for the reduced funding is Florida’s governor’s disdain for people with disabilities. He has made plenty of efforts to reduce or elminate funding to pretty much anything that has to do with disabilites (and also education). The 20.2% budget decrease is just another example of how little he cares for those with disabilites, and I suspect he even knows that autism is a disability. Because of the tremendous people at CARD, I suspect the budget reduction will have very little impact on those that come there for services. Sure, some of the educational stuff will be self-paced online sessions, but losing the interaction with the staff by those receiving services will hurt. We have had nothing but positive experiences with CARD, from Kaitlyn’s initial evaluation to them helping translate some of the clinical diagnosis into English for us. They will still rely heavily on students that are studying psychology to come there and help out, and that aspect won’t be touched by any budget reductions.
There was, however, a bit of good news yesterday as well. Given the governor’s disdain for both people with disabilities and education, I held out little hope that he would sign HB 1329 into law, even though it cleared both chambers during the legislative session this year. HB 1329 expands eligibilty for a McKay Scholarship for students in Florida from requiring an Individualized Education Plan (IEP) only to allowing students on a 504 plan to be eligible as well. What this means is that a a student will no longer have to be receiving services from a school district to be eligible for a McKay Scholarship to attend a school that can serve them better. Previously, a student was only eligible if they had an IEP in place. There are a significant number of students on a 504 plan in Florida that had been left out. I am excited by this because it will open up more opportunities for more students in our state.