Our First IEP

On Friday, we attended Quinn's first Individualized Education Plan (IEP) meeting with the school district. This was a meeting to discuss Quinn's eligibility for special education services, the transition from early intervention to special education, and the specific goals and services provided to meet those goals. Quinn is not turning three until September, but our school district wanted to have the initial meeting now, before folks leave for summer vacations. I'm a plan-ahead type of person, so that worked well for me.

Years ago I attended IEPs as a support person for others in a professional capacity, and so I know they can be contentious meetings. As we told friends and professionals about our upcoming IEP, they advised us to make sure we knew our rights and be prepared to advocate.

I'm happy to report that the meeting went very well and was entirely drama free. What a relief! And they offered to give Quinn everything we'd want him to have (except PT, which they admitted they should have evaluated for, and will be evaluating for asap). 

There were, however, a few odd/sad moments.

First, the odd moment. At the very beginning of the meeting, when they asked the school psychologist to report on Quinn's eligibility for services, she seemed tentative as she said, "Quinn has significant global developmental delays which do qualify him for services [pause] which is consistent with [pause] a diagnosis of [pause] mental retardation." Then everyone in the room looked at Zac and me, seemingly wondering, "Are they gonna cry?" So I just said, "Yeah...it's not a surprise." And the meeting continued.

Then a couple of sad moments. The first goal they wrote for Quinn, which he is to accomplish over the next year, is to make a chain consisting of X number (can't remember) of large beads on a thick rope. Quinn has had big beads and a thick rope in his toy collection for about a year (thanks, Grandpa Bill!). He plays with them often, and can sometimes get one bead on. His therapists also use beads like this regularly with him. The sad part is that not too long ago, we had another couple over, and their son, who is several months younger than Quinn, made a long necklace with the same beads in about 15 minutes, after his parents showed him just once how to string the beads. They said he did not have beads like this at home and had probably never played with beads. So, the idea that after a year of instruction Quinn would be able to make a bead necklace successfully on 75% of all trials was a little depressing.

Also, though there were goals related to speech, none of them actually stated that Quinn would, in fact, speak. Again, this is over the next year. The goals were about making pre-speech sounds, improving imitation skills, drinking from a straw (important for mouth control), etc. But no actual talking appears to be expected.  I do think Quinn will be talking more in the next year. As noted before in this blog, he does say a few things, (like "moh" for more, and recently animal noises, and he is signing several words now, too). But it's just kinda sad that he's not so far along that it didn't seem appropriate to have a goal stating that he'll speak X number of words over the next year.

After the diagnosis

You all must've known that after the flurry of light-hearted posts, we'd have to throw in a serious one. We have talked many times about the period right after we got Quinn's Fragile X diagnosis, how we were feeling, and what was or would have been helpful. I wanted to write this post while the feelings were fresh enough to remember, but no longer too difficult to write about. We got Quinn's diagnosis about five months ago. For about a year before the diagnosis, we knew he was delayed in his development, but we didn't know why, and we didn't know that it was a permanent (or perhaps someday, but not today, curable) condition.

We are very grateful to many family members, friends, co-workers, and acquaintances who expressed their love and support for us. Some of them commented, "I don't know what to say/do." At the time, we were so consumed with our feelings, we didn't know how to respond.

Now that we've had a little time to think, we have some ideas, which we hope will be helpful to people grappling with a new diagnosis.

When other sad events happen to a loved one, friends and family may feel awkward or unsure about what to say or do, but there is usually a social script or personal experience to rely on. For example, many people have experienced the loss of a loved one, and we have ways, as a society, of dealing with that, like bereavement leave, rituals, and offers of casseroles. We have no social script for dealing with parents who have just learned of their child's special needs diagnosis, and most people have not personally dealt with something like this themselves and statistically speaking, they probably never will.

So here are some things you can offer - or ask for - in the period right after a child receives a special needs diagnosis:

1. Time off from work and other social obligations. One of the things that was hardest for us was that we felt expected to carry on with business as usual. This was very difficult. We desperately needed a break, and found it difficult to ask for one.
2. Babysitting help. As much as we love and adore our little guy, it was hard to process this information on very little sleep while avoiding tragic toddler accidents, changing diapers, reading Dr. Suess, and wiping a constantly runny nose.
3. Help with household stuff. For the first couple of months, we were so sad and exhausted that just paying our bills, doing laundry, and maintaining our house felt onerous.
   
4. Social outings that do not involve children. For the first couple of months, just seeing typically developing children was heartbreaking.
   
5. Meals, flowers, cards, emails. All of these little reminders that people care mean so much. We treasured the kind words and deeds of our friends. One night a friend of mine invited me over for dinner, when her husband was working late, after her son had gone to bed (see #3). The dinner was spaghetti with jarred sauce and a green salad. I cried in the car on the way home after seeing her, out of appreciation for her kindness. It was so nice to get to talk with her in a quiet, warm, comforting space, and not have to cook or do dishes.
6. Culturally appropriate spiritual healing. Since there are no rituals for making the transition to being a parent of a child with special needs, it is helpful to find places, people, books, music, and ceremonies that mark and make sense of the experience. We're not talking about the facts; we are geeks and have read too much about Fragile X, early intervention, medications, etc. Edited to add: We are also not talking about the utterance of religious maxims such as, "This is God's way," which can be unhelpful, insensitive, or culturally inappropriate. This is about processes for dealing with the existential stuff: What does this all mean? What now? We are still looking for more ideas on this one, and welcome any resources others have found helpful. (And yes, we've seen "Welcome to Holland". It's okay, but not really doing the job.)
7. Shared language. One of the things about this diagnosis, and probably a lot of other special needs conditions, is that in addition to dealing with feelings of sadness, a parent must also become an expert in the child's condition, quickly learning new words, people, and places. The more friends and family know, the easier it is to communicate about our experiences. Even day-to-day conversation can be encumbered when in the course of making plans, we casually say, "Quinn has an OT appointment that afternoon," and then have to pause to explain what an OT is and why Quinn has one. We love it when people know the lingo because it makes not only the "big" conversations less taxing, but the everyday small talk as well.
   

To help anyone dealing with a new diagnosis who has found this page by googling, we hope that other parents of kids with special needs who read this blog will use the comments section to add your thoughts on what was or would've been helpful to you, or write a post on your blog and link to it here.

Me, too.

When one human tells another something, it is pretty common to say, "Me, too," in one form or another. It's just human nature, and most of the time, it can create a sense of connectedness ("I want a big piece of chocolate cake." "Me, too! Let's get one!") or is simply benign ("I like the nice weather." "Me, too.") Though I know people are just trying to be nice, to sympathize, and to relate to our experiences, the "me, too" response is often not the best one. Here are some forms of "me, too" we hear a lot:

- "My kid is a poor sleeper, too."
- "My kid can't talk yet, either."
- "My kid has a short attention span, too."
- "My kid had a tantrum the other day, too."
- "My kid needed ear tubes, too."
- "My kid needed an MRI, too."
- "My kid drools constantly, too."
- "My kid wasn't potty training at that age yet, either."
- "My kid walked late, too."
- "My kid also needs lots of help eating with utensils."
- "My kid also won't drink from a normal cup or straw."

Parents of kids with special needs may experience all of the above and more all on the same day, or even in the same hour, with a low expectation that things are going to get better soon. So in this situation, depending on my mood and how much sleep I've gotten, "Me, too" can sound hilarious, ridiculous, irritating, or out of touch. EDITED TO CLARIFY: This does not apply to all cases of "me, too," - just the ones where the purpose of the "me, too" seems to be to suggest that Quinn is not all that unusual...

If you are a parent of a kid with special needs, then by all means, "Me, too" is very appropriate and will most likely be appreciated. If you are a parent of a kid whose development is roughly on target most of the time, then some more helpful responses are "That sucks" or "Here's a big glass of red wine."

The R word

I know it is no longer politically correct to use the term mental retardation, and that disability advocates want us to say intellectual disability instead. But here's the thing. No one knows what that means, and well, with my already having to give a science lesson every time I try to tell someone what's up with my kid, I don't want to also have to give a lesson in politically correct vocabulary. Mental retardation is quick. Everyone understands it.

Case in point. Today, two co-workers were discussing potty chairs (don't ask) and then one co-worker (who doesn't know me well and didn't know about my son) asked me which one my son used. Ummmmm... So in an effort to have a quick conversation and get back to work, I simply said he probably wouldn't be ready to have a potty chair for quite awhile. I could see the wheels in her head turning, like she was doing the math, trying to figure out how old my son was. Then she asked and I said, "He's a little over two." Then more wheels turning. So I volunteered, "He has a disability." Then she said, "But I've seen him walking and he is quite charming!" Ummmmm, okay... So I said, "Oh, he can walk, but he is mentally retarded." And then the light blub went on. She asked for more info and I began the Fragile X Elevator Speech.

I've tried intellectual disability and developmental delay before, and those words tend to elicit irritating puzzlement ("Huh?") or trivialization of the problem ("Oh, my son was a little slow, too, and now he's a rocket scientist!"). But mental retardation works every time. What language do you use?