Studies, Studies, Studies!

I knew there was a variety of testing available, but this feels ridiculous! A month ago, Buddy received 2 evaluations at daycare: the Denver II and the ASQ (Ages and Stages Questionnaire). He received the same evaluations at 6 months – I love our Daycare! (It is NAEYC certified – definitely something to look for in a daycare.) They put great priority on social-emotional development and catching any "problems" if there are any. We knew that Buddy was a little behind in some areas, but were completely caught off guard by the test results: he is far behind in every area they test! I didn't even know he could be "far behind" at 12 months! (My mom suggests it's because he was born early, but even with an adjusted age to account for his 2 weeks before due date, he's still far behind.)

At the daycare's and pediatrician's suggestion, we got an evaluation through First Steps. They did two more evaluations: the DAYC and a Sensory Processing Evaluation. These were pretty involved, and the OT was at our house for about 2 hours doing these evaluations. He qualifies for FirstSteps based on these evaluations.

The pediatrician has since recommended looking into putting tubes in his ears, because he has had so many ear infections. Daddy had chronic ear infections as a child, so we have a meeting set up with an ENT to discuss tubes. Our speech therapist also says he should have an audiologic workup with the ENT. She thinks he has hearing problems, probably associated with the ear infections.

The OT said some of Buddy's problems she has seen associated with allergies, such as his reflux, developmental delays, and small size. So we are taking him to an allergist for an evaluation there.

In addition, we enrolled him in Parents as Teachers as a baby, and have been working with them. (Great program, I highly recommend it to all parents of young children.) Our school district is part of a Developmental/Autism study that is trying to find out how early autism can be diagnosed so they can start services. As part of this study, they did an Ironton and Red Flags screening. These screenings signaled he has some potential issues, so we have a three-hour appointment with them to screen for delays or autism.

What strikes me is that Buddy is a good kid, and when you look at him, play with him, you don't notice anything wrong. At least not with an untrained eye. If he weren't in daycare, I never would have brought some of these issues to the pediatrician, and would not have had him evaluated for First Steps. If it weren't for the research study, I would not have any autism evaluation at 14 months. (BTW the normal wait time for this doc for an evaluation is 6 months!) As we're going through all this, I have to keep reminding myself that he is still the same Buddy he was before, and he is not defined by labels or problems.

We will be getting a lot of new information over the next month. I am a little nervous about what this will reveal, and hope it shows many good things about Buddy!

How I Organize my Child’s Special Education file

After Buddy's initial meeting with First Steps, I had so much paperwork that I realized I needed to start getting it organized now. I had done special education advocacy in the past, so I know what might be important later (everything, if it goes to litigation) and what kinds of documents I would need. I also know how I wish clients had organized their child's file to make my life easier (and hopefully, save them some costs).


I am an office supply junkie, so I got some fancy file folders for this project. They are more expensive than the regular manila kind, but are heavy-duty and will hold very important documents. I wanted them to be attractive to encourage me to use them--and fancy folders are better for that. I bought a package of 6 folders, and when I got home, I labeled them:

• Calendar/notices
  
• Meeting Notes
  
• Evaluations
  
• Notice of rights/general information
  
• IFSP (IEP for a child 3 or older)
  
• Contacts
  

In the Calendar/Notices section, I put the initial "Welcome to First Steps" letter. I will use that folder for all notices (such as a meeting notice). I also have a small paper calendar I put in there to write down all appointments, contacts, visits, etc. THIS IS NOT MY REGULAR CALENDAR! This is a documentation calendar, where I am writing down only things that relate to Buddy's services and evaluations. This includes dates of service and how many minutes of service we got (according to me).


The Meeting Notes section is where I keep any notes I make of meetings, or any notes I receive from teachers regarding status and progress meetings.  I am not putting therapy notes in there, but will have them separate where I can access them easier.


The Evaluations section is just that: any formal or informal evaluation of Buddy goes into that section. These are VERY IMPORTANT. Meaning: if I did not keep everything else, this is one of the two things I would keep. 


The Notice of Rights section is where I am keeping all the handouts they give me that I don't bother looking at. Under IDEA, school administrators are required to give a lot of paper that explains the parents' rights, the program itself, why the sky is blue, and anything else related. Most of this I just skim, if I look at it at all. (If you are not familiar with special education law, however, I highly recommend you look at the notice of rights, and keep it in a safe place.) I wrote down the date I received each paper at the top right corner, and put it in the folder. I don't expect I will look at these again, but they're there if I need them.


The IFSP section is also self-explanatory: this is where I will keep my son's IFSP (or IEP for an older child). This is the second thing that is VERY IMPORTANT.


The Contacts section is for my information, my own address book. This is really the only thing I may regularly look up in the Special Education file once everything is up and running, and I should really keep this information elsewhere as well.


I do not have a folder for correspondence. Correspondence between parents and teachers can be extensive, especially for special education students. I will probably do most correspondence via e-mail, and will then store those on my computer. Much of the necessary correspondence for this file belongs in the calendar/notices section, and I will print out notices to put in that folder.


Is this how you created your child's special education file? What do you do differently? Do you have any other recommendations?