Do you think we'll look back...?

Do you think we'll look back ten years from now and wish we could tell our past selves to relax? Tell that past self that it really will all be ok?

Even now, only six months after our first official evaluation, I wish I could go back to the me that was sitting in front of the computer writing that first post while wiping tears away that things will get better soon. The worst of my fears on that day are not going to come true. Ava can talk. She does not have severe apraxia and we're seeing relatively quick progress. The intensity of those first emotions does fade. Life has moved forward and we have found a new equillibrium.

We are raising a daughter for whom talking is difficult rather than a natural miracle like it is for the rest of us. She needs help and practice to learn to talk and that process will be measured in years rather than in months. I've accepted that. It is simply our new reality. Our lives are so complex and are made up of so many events that the speech issue is really only one small part of the whole. And the whole picture of our lives is a good one. I really do believe that in my heart.

Then there are the fears that creep in late at night, or after a particularly difficult day. At those time I wonder if I'll look back at the day I wrote this post and wish I could tell her that there are unanticipated struggles ahead and that I need to be more vigilant.

Initially, I was nothing but grateful over the extra OT services Ava will be receiving. As it sinks in that she is receiving those services because experienced professionals believe that there is a whole additional area of concern I had previously missed, I find myself struggling again to adjust.

I can wrestle with all these thoughts endlessly, but the bottom line is that Ava is always the same. She is my daughter. She loves me and I love her. A new opinion, service, or diagnosis does not change who she is. Like all other children she needs love, space, encouragement and excellent teachers to help her learn and grow into the best person she can be. I will continue to provide her with those things to the best of my ability and let the future take care of itself.

Our First, and Only, 6-Month IFSP Meeting

Unlike IEPs, IFSPs are reassessed twice a year. Our 6-month IFSP meeting was held Monday morning. I was nervous going into that meeting. Ava has made great strides and I was a little concerned they would tell me that she didn't qualify for services any more.

As it turns out, I didn't need to worry quite so much about that. I was careful to stay focued on her needs rather than her successes, but I did not exaggerate her needs. The main ones I see right now (in no particular order) are:

• The more stress she's under, the more difficulty she has communicating. So, when she's upset or hurt, that is when she tends to lose her words. Those moments are exactly the ones in which you need for her to communicate the most.
• Although Ava is making many communication attempts at home, she is reluctant or unable to communicate at school with her teachers and peers. At school she'd often rather go without than try to tell someone what she needs. At school she doesn't even try to talk to the other children in the classroom. That situation just breaks my heart and I desperately want to see improvement there.
• As an SLP, I continue to recognize the comprehensiveness of the speech delay in terms of intelligibility, but early intervention won't really write goals for specific speech sounds or intelligibility issues because there is such a wide range of normal at this age. That doesn't make it less valid, just something out of the scope of early intervention apparently.

So, we reviewed her speech progress and discussed her speech needs rewriting her goals and continuing her in speech therapy for an hour a week. If our therapist's schedule permits, she will actually see Ava at school in order to facilitate her communication and speech there. I will obviously continue to work with Ava here at home.

The big story of the IFSP meeting, however, is that we veered off into an entirely new direction. My service coordinator sent me a questionaire ahead of time and one of the questions was about my areas of concern for Ava. Almost on a whim, I wrote in a couple of non-speech items that have been bugging me for a while now. Honestly, I was expecting to bring them up and be reassured that they were within the normal range for kids her age. That's not exactly the way it went.

I've noticed that Ava is really sensitive to noise. The sound of the washer or dryer running will bother her enough while she is watching television in another room for her to leave the tv, run around the corner and down a hallway and shut the door to the laundry room. The flushing of the toilet in a restroom bothers her. Her hands clap over her ears and she recites, "loud, loud, loud" until the sound stops. Her father's electric razer will get the same reaction. We took the kids to their first movie (Winnie the Pooh) and I spent the entire time with my hands over her ears trying to reassure her that it really was all right.

Another issue is her picky eating. It is getting worse and worse and seems to be related to texture. She doesn't like to touch things that are messy and if her hands do get messy she immediately wants a napkin. She doesn't like to be touched or restrained. When other children approach her she gets really upset and reacts almost as if she's been hit. Washing her hair and face is pretty traumatic because she reacts so poorly to the washcloth and tilting her head back.

Well, to make a long story a bit shorter, we've added an hour of occupational therapy to her services. They feel like some OT might make a big difference with her feeding and bathing issues and other sensitivities.

I've never been closely involved with occupational therapy services before and so this will be a whole new area for me. I am hopeful that they can help Ava to be less sensitive and to experience the world a little more comfortably and fully. That would be such a gift to her.

All in all, a useful IFSP meeting. Next up: transition meeting and scheduling our first occupational therapy session.

Thoughts about IFSP Meetings

In order to qualify for services, children need to meet specific criteria. That's necessary. I get that. No one wants to provide therapy to children who don't really need it, and we can't afford to treat everyone who is even a little delayed, so you set a criterion and treat the children who need it the most. It is practical and theoretically fair if the same criteria are applied to everyone.

However, when the system is set up in this way it causes stress and tension. Parents want therapy for their children and are nervous about qualifying. When the time comes for a new meeting, the parents are hesitant to celebrate their child's successes because they are afraid they may no longer qualify for services that are still very much needed.

So, instead, you focus on all of the areas in which your child still struggles. It makes the meetings more than a little depressing. And although early intervention can be a wonderful experience and resource for families (it is for us), the time frame for early intervention ends so early. Ava will have been in the early intervention program for only a little over a year and then she will age out.

Then you have to start the whole process over again with your local school district and their criteria are even harsher. At yesterday's IFSP meeting, our service coordinator mentioned that next month we will need to hold a transition meeting. The purpose of that meeting, as I understand it, is to introduce us to the school district people that will be handling evaluating Ava to see if she qualifies for their services when she turns three.

And so time, and the special education processess, marches on.

(more on how our IFSP meeting went tomorrow)