I feel it coming...

Like a big dark cloud. Like a herd of stampeding Wildebeasts. Like a chilly fog that has wrapped itself around everything this week despite the beautiful spring like weather.

Depression? Angst? Annoyance? Mid-life crisis?

No, IEP meeting barreling down on us at the end of the week.

I feel it coming, everyone is going to sit there and nod and look at us with compassion and then explain why Shea can't be in the multi-age class for 1st grade. Even though his specialists think it would be the right spot for him. Even though we have 3 years experience with multi-age and feel it would be the right spot for him. And, even though when pressed some of his IEP team think it might be the right place for him.

The reason?

Because it is just so darn popular and everyone wants multi-age. For those of you who may be confused, the mulit-age program here is 3 classes of 1st, 2nd, 3rd graders with one teacher each. The student stays with the same teacher for the 3 years and moves through different levels of being helped and then helping. I saw it in action. The mentoring that happens is quite wonderful and happens organically. The kids just find it natural to protect and help the younger kids and, of course, the younger kids don't need to be told to emulate the older kids.

The format is more fluid, less "sit at your desk and shut up", more more variety.

The IEP team is going to point out Shea's distract-ability and how he needs extra help with direction taking. I am going to point out that he is an enthusiastic learning when motivated. They are going to point out how multi-age kids need to be self-motivated and self directed and that Shea needs more structure. And, I am going to want him in that program anyway.

Yes, I am biased. Jake says he just wants Shea to be comfortable where ever he ends up.

In all honesty, when they say he needs structure, I am afraid they are going to try and shove him with this one teacher who is so structures and cold that I think it will backfire. She makes the kids sit the entire AM doing workbooks at their desks by themselves and punishes them if they do not finish by not letting them go outside for recess.

Some say she is old school. Some call it structure but my sensibilities are horrified. So horrified that I am going to break the cardinal rule of parents when talking to the school.

Insist that my kid does not get this one teacher.

This oppositional behavior from Shea is coming out more and more. If you want him to do something, heaven help you if you just ask him to do it, he won't. One must be creative and motivate him in others ways. Just laying down the law does not work. Is that what they are calling structured teaching?

Our wonderful IEP case manager is pulling together a list of characteristics for kids in multi-age. And, pulling together a list of what all the Kindergarten teachers see as beneficial traits for multi-age.

See? Do you feel it coming too?

I guess a parent has to pick their battles with the school too. I guess the question is: how much of a full on onslaught do we want to provoke? How much of a pain in the ass do we want to be?

If multi-age is so darn popular, maybe they should expand the program!

On keeping the communication flowing....

I haven't heard a peep from the teachers since the fall conference where we were told (again) that he was having a tough time at Kindergarten recess. You know, the one with 50+ running and screaming all over the place. It seems he gets a little over excited. (really?) and can't keep him hands to himself.

But I hadn't heard anything so I sent this e-mail to prompt an update.

"Hi there, Could I just get a brief update on how Shea is doing out at recess? Is he still hitting and terrorizing the others kids when he is getting over excited? Or have things mellowed some? Please let me know so we can help reinforce the appropriate play behavior when we talk about it at home. Thanks so much!"

Sent mid-day, I had not gotten a reply by the time I picked him up at school for OT. "Hi mom!" he says and promptly bursts into tears. This never happens. This is not at all normal. I try to get him to tell me what is up. All he can really spit out is that his pal keeps on calling him "Dude" which has been their game for about 2 years now.

I asked him if he had fun at recess and he told me he had to sit out. Uh oh...

I get this e-mail from Kindergarten teacher with an add on from the aide the next day in response:

"Thanks for your email. As I am not at recess with Shea, I forwarded your email to J ...the following is her reply. Hope this information helps...thanks for continued support at home."
"Shea is still requiring frequent prompts about not grabbing other students. This applies to both recess and line behavior. Shea seems to have relatively lengthy stretches of time (4-7 days) where his behavior on the playground is mostly age appropriate punctuated by several days of difficult behavior. He requires frequent time outs on those days. I have been asking students to use deliberate "stop (fill in the blank with the unwanted behavior)" when Shea is getting too grabby. Shea then is prompted to apologize. He is compliant. In comparison to the beginning of the year, Shea is on a positive behavioral track but, again, still needs frequent reminders about keeping his hands and body to himself, both in line and at recess. We continue to work on this behavior."

Shit!

I reply:

"Thanks, you guys. I am not sure how or if we can do this but I think it would be helpful for us to know when his tough time is occurring so that he will loose privileges at home if it continues. Would it be possible to just get a quick e-mail when he is getting in trouble so that we can talk about it at home with him sooner rather than later? Obviously he is not telling us about any of this. Sorry to add more work but I think that would help because we do not know when it is happening, he is thinking he can get away with it. Let me know if that is possible. Also, yesterday when I picked him up for OT, he burst into tears. Which is so rare that it has NEVER happened before. I couldn't really get a straight answer but something about X calling him "Dude" which has been their running joke for 2 years and hardly an insult or teasing. Still not sure what happened. I asked him if he had a good recess and he said that he sat out. I was always pretty nervous of that recess time, knowing it was going to be a bit too much for him. If it really isn't working out and significant progress isn't being made, I guess I would rather try something else for the 2nd half of the year. Thanks for all you do."

Then I got a better e-mail from his IEP case manager:

"So, a new plan is for me to email you every couple days/week to let you know "how it's going" on the playground. Just a reminder that this "grabby" behavior is never considered to be malicious. He really gets so excited! He is able to tell J what he "did" every single time. Reinforcing the preventative strategies have helped. As agreed, if we are able to catch him as he is winding up...Jennifer intervenes and practices the steps towards "reorganizing". He and I practice facial cues." Show me a happy face." "This is a grumpy face. If your friend shows you this, do you think he likes what you are doing?" He has made significant improvement as compared to this time last year, and even as compared to the beginning of the school year. He leaves the playground appropriately when recess is over and listens to redirection and complies with time out requests. As you suggested, the toys in his pockets help him reorganize when he does have to sit for a few minutes. There are usually one or two little Kindergarten buddies needing to sit and reorganize at recess for a few minutes. The frequency of these instances for him as Jennifer are sporadic, cyclical and decreasing in intensity. Shannon reports incidences during preschool recess as much more rare. I was absent yesterday, but X, Shea and I can try to figure out what is going on with the "dude" game."

Now, that sounds better. And, in which I respond:

"Thank you so much, K! I am glad that you guys have a strategy and he seems to be responding and improving. I am also relieved to know that he isn't necessarily the only kid who has to sit out sometimes. Whew... But please let me know if you feel home reinforcement would benefit. A little talk about not getting to play his DS because he was naughty is incredibly powerful with him. So, feel free to use that stick or cue me! Thanks again for all your quick responses. All in all, I think it is going really well. I just feel sort of out of the loop."

Sometimes its hard to push for the information you want and it can be intimidating at times. But just keep at it. Know your rights. Know your kid's rights. Be an advocate.

If you inquire with tact, kindness and genuine appreciation, they will (usually) respond accordingly.

Also, it is not a bad idea to do the Special Ed correspondence in e-mail. Not only for the reason that you can quickly make it into a blog post but you have documentation and you can sound a little less emotional. The worst encounters I have ever had was when I was talking directly on the phone with the teacher. Some things I never would have written slipped out, never to be retrieved again. And, in a system that documents everything in the IEP form, having it all out in writing with a date on it, is mighty good.

But keep your cool folks. Let's remember MOST of the people who work with kids with special needs are wonderful, caring people who are doing this job for the best of reasons. Be extremely taciturn about escalating because these folks have your kid under their thumb on a daily basis. If you feel that you might have too much of an edge to your correspondence - STOP - pull back. Either send it to a calm friend to proof read and/or sleep on it. Sometimes after I have slept on it and re-read it, I can barely believe it was me that wrote it!

IEP meeting prep

A date has been set. For those of you who don't know, Shea's birthday is April 20th. He will be 5.

The school is supposed to do the IEP meeting at or before the birthday to be completely compliant. Last year our meeting didn't happen until late May. Which was only one of the several problems with Shea's teacher last year which, of course, I covered extensively with this blog post and this one too.

We are much happier with the teacher this year, thank goodness. But, IEP meeting are still a bitch. After going through this a couple of times, I have determined a fledgling routine.

A month out, like right about now, I talk to all the specialists and ask them if they have any suggestions for the school or specifics to add to the IEP. This has been very helpful in the past. Not only do they bring up really good ideas but they give you the edu-speak terminology on how to ask for it. And, oh yes, it is a different language. And, just like in a foreign country; if you can't speak it, you don't get it.

So, I am beginning to pull all that together now. If I time it right, I allow the specialists a few weeks to ponder it and they always come up with very good suggestions.

My big concern this time around is to Kindergarten or not to Kindergarten next year.

I mean he is only 5. Plenty of typical kids, especially boys, don't start Kindergarten until 6 but I don't want him to be bored. Will another year of cutting and pasting and working on his expressive language be dull? In my heart, I don't think so. Why push him ahead when he is clearly not ready. Socially or fine motor either.

I know I am not supposed to do this but when Molly was 5 she was so precociously quick that I knew she was ready. Shea has never been that way. He isn't even writing letters. He knows his alphabet and counts but doesn't write at all. They will expect that in Kindergarten. Why should I push him in there knowing that he isn't ready. Then, again, there is the school of thought that you set the bar high. Kindergarten for Shea next year would be setting the bar high indeed.

Writing and his expressive language delay, some social issues and the complete lack of potty training makes me think another year in the Developmental Preschool sure couldn't hurt. And, will probably be a nice, comfortable place to be while he continues to work on some of this stuff.

So, this is where I try to peel my mother's mind away from my rational mind. Am I making this decision purely to protect him as long as I can? Probably. Will he be bored? Hard to know. Will he fail? Probably but is that so bad? If everything is too easy for him will he never learn to strive? Maybe. If I hold him back will he be the biggest kid in his grade? And, if so will he pick on the littler kids? Hmmm........

This is a perfect example of the ambiguity of parenthood. Where in the heck is that instruction manual? What to do, what to do?

Fighting over the shrinking pie

I had a real time phone conversation with a fellow special mom met through my blog earlier this week. How is that for the amazing world of the internets? You know who you are, honey.

After listening to the trials and tribulations of advocating for speech therapy from the state she lives in, it started me thinking.

Here we are, all of us fighting for tiny slivers from this shrinking pie. This untenable situation forces parents to fight with the schools and their states for services, schools have to fight with their states for more funding, meanwhile states beg for more federal funds to pay for the appropriate services. Talk about a vicious cycle. The long and the short of it, no one is really getting all they need.

Bubble lady, our beloved speech therapist, mentioned one time about how most of the special ed dollars go to the highest needs kids. Is this fair? Yes, they are the highest needs kids! But, when it comes to the higher functioning kids, the ones who could really use more speech, or some additional OT just don't get it. The dollars are already gone. Does this mean that special kids are competing with other special kids for services? You bettcha. And, that sucks.

I feel for these people that have to say no. What a horrible job. They know, know with all their hearts, that early intervention is the way to go and will save untold bucks down the road. But, the bucks just ain't there. Should that stop a parent from fighting? Hell no. If a parent doesn't fight for their special needs kid then no one will.

The ones who say no, at least they are intellectually honest, but I have heard stories about condescension, real road blocking and laying the blame at the parent's feet by school or state officials! This is unconscionable. And, a signal that it is time to start documenting EVERYTHING and start thinking like a lawyer.

There is help out there. And, when I went looking, I was impressed with what I found.

The Disability Rights Advocates:

DRA is a non-profit legal center whose mission is to ensure dignity, equality, and opportunity for people with all types of disabilities throughout the United States and worldwide.

DRA's national advocacy work includes high-impact class action litigation on behalf of people with all types of disabilities, including mobility, hearing, vision, learning and psychological disabilities. Through negotiation and litigation, DRA has made thousands of facilities throughout the country accessible and has enforced access rights for millions of people with disabilities in many key areas of life, including access to technology, education, employment, transportation and health care.

The National Dissemination Center for Children with Disabilities:

We are the center that provides information to the nation on:

• disabilities in children and youth;
• programs and services for infants, children, and youth with disabilities;
• IDEA, the nation's special education law;
• No Child Left Behind, the nation's general education law; and
• research-based information on effective practices for children with disabilities.

Both these organizations have pages and pages of information, contacts, phone numbers and background. Way more than any special parent would ever have time to look through but the info is there waiting. I find relief in this fact. There are people out there, lawyer critters, that work on these sorts of issues every day. You, me, we; are not alone.

So, how much should you know backwards and forwards and commit to memory? Not much. Only as much as is relevant to your particular situation and the extent of your free gray matter. But, some of these terms and contacts may come in handy if you ever have to write that formal letter to the school or state. You don't have to be a lawyer to sound like one or know the law like one.

Transitions, outreach and what do the kids do after school?

I just got back from another one of those Special Education Advisory Committee meetings. Why are these meetings always held in the evening? I find it particularly ironic when we parents should be home, you know, parenting.

Anyway, it was another interesting meeting. Since we are just getting this committee up and running, tonight we elected a chair and banged through some housekeeping. But we did have some time at the end to bring up our individual issues of concern.

This is where all the administrators look kinda scared as a parent member begins to speak. I am afraid this is illustrative of the "defensive crouch" that many school districts exhibit concerning special needs issues.

One parent brought up the question of transitioning from elementary to middle to high school: what is the procedures and practices and how can we make it go smoother.

I thought this was a very good point. Transitions, whether they are throughout the day, from day to day or year to year, are big deals for all kids let alone kids with special needs. Our director of special services brought up examples of how these transitions were handled and all the hard work that staff does before hand to make it go smooth. And, the point of the discussion ended up being; the parents just don't know. They don't know what all is done, behind the scenes, to help facilitate a transition. And, that parents basically feel out of the loop.

This has been my experience too. I think that staff and administration are so nervous of "Special Parents" they tend to deal with them on a need to know basis. If the parent needs to know something legally or makes a point to ask they get the information but it isn't readily available. Now part of this is due to the wide range of needs for the children within a school district. It could be very difficult to make blanket procedural comments. But, my thought is: well then tell the parents that as well. More information for a parent is always better than not enough.

My pet concern is expanding communication channels to the community. Because of the "defensive crouch", the school district may think "no news in good news"; meaning no lawsuit or group of organized pissed off parents. I would like our school district to be proactive and reach out to the community with positive information about the programs and services offered. There are moving success stories that take place every single day and sharing these could greatly improve community perception of the program. This should not be ignored.

I pointed out that we are a small "high touch" community and that the school district should be singing it's praises more. We should be tooting our horn when appropriate and welcoming special needs family into the fold. I mentioned that if a family had a bad experience early on with the special ed program, chances are we have lost them for good. I would hope we could repair some of that lost goodwill and invest in more community involvement. I also feel that by being proud of how we take care of our special kids, we can emulate empathy and tolerance to the community at large.

Another parent brought up the issue of after school activities for special needs kids in middle and high school. Many of these kids may not be able to do sports or other activities after school as a typical kid. They are out of school early and what do they do? There was discussion of some sort of after school tutoring, reading time, game playing, or social time which could be available but of course the old funding bugaboo reared its head. Although, there may be various grant opportunities or mentoring possibilities that we can pursue.

All good stuff. Feel free to add your own.

Update: Shea's fine motor and Sensory issues

We had the long awaited meeting about Shea getting OT services through the school. He had recently been re-tested with the Peabody for fine motor skills and they also ran the Sensory Integration test too.

There weren't many real surprises; Shea has significant sensory integration issues. He is Hypo vs. Hyper meaning that he needs extra stimuli, big touch, heavy weight, lots of movement. This kind of makes sense because of his "low" lone issue in his face. But, the schools don't give services for Sensory Integration issues; our only chance was to have him qualify for fine motor.

It's all good information but the piece by piece conversation cataloging in detail all of Shea's "challenges" is always really hard to hear.

I wonder why they don't automatically start off with what the kid is good at but they didn't. I suppose they are trying to be economical with time and just jump right in but it always makes me pissed, defensive and depressed as I am sitting there.

So, after all that, Shea's fine motor skills did not test low enough for him to get services so basically the whole meeting was for naught. We did get to talk about a lot of uncomfortable things there were pretty upsetting for me though. Like how Shea is pretty aggressive and explosive on the playground; hitting and pushing.

Because of his hypo-sensitivity issues, they are going to try some new things. For example: they would like to put a big pad out in the playground up against the fence. This would be a "bounce off" area where it will be ok to push, and hit and run into it at high speed. Great. Something tells me that will be a popular area among the boys of the class whether they have "sensory issues" or not. They also suggested a big, thick nylon rope for tug-o-war.

I brought up the sibling issue again. Molly is Shea's prime role model on everything and I know that how they play together is effecting how is playing with the other kids. I had suggested before that Molly could come to the class for a visit so that their interactions could be observed and maybe some gentle suggestions could be made. By someone other than me. I've tried, believe me. I am the broken record but if a counselor or Shea's teacher could talk with Molly and give her some advise I think it would go a long way.

That suggest sort of went flat last year and no one seemed to have the time. But, at this latest meeting, Shea's teacher suggested for Molly to come visit during recess and that she would talk to her. I think we will try that.

The potty training came up again, of course. Apparently they are having no success at school and not really even trying. In P-4, they don't really encourage kids to go potty together so he is getting no role model action there. Last year in P-3 they did but now they are big kids and it is a privacy issue. They also don't want to stigmatize him or make it obvious to the other kids which could be bad or embarrassing down the road. I guess they are right.

So, we are in the same place we have always been but a meeting like this seems to suck the optimism right out of the room. There is something about having all these challenges painted out one by one before your eyes that is very disconcerting.

I know they are doing their best and they like Shea and want to see him succeed. I do value their input and appreciate the time they spend. But, it does point out how rigid this system is, how the bell curve rules and being inside or outside the standard deviation is the prime discussion point.

I like the suggestions of different kinds of play or something new to try. You know, real life stuff. But, when someone shoves a sheet of paper with numbers all over it, I tend to go blank and get irritated. This is my son! Not a data group!

"You know, this doesn't mean anything to me. Please don't waste your time going through all these numbers because it doesn't mean anything. Let's just talk about Shea." I suppose I was rude. I don't really blame them, this is the pool they swim in.

Sheeple factory: when public school just isn't cutting it

As a self professed bleeding heart liberal, public education is near and dear to me. There has never been a public school bond measure or levy that I have voted "no" on whether I had kids at the time or not.

We were in West Seattle when we found out that our kid wasn't necessarily assured a place at the neighborhood school and may very well be bussed across town for Kindergarten. Alarm bells went off for both of us; perhaps explaining the exodus to Vashon Island by the time Molly was 2 and Shea was just a wish and a prayer. We chose Vashon for the excellent public schools; often times described as "quasi-private".

Now that I have been at this a while, I realize that public schools although legally supposed to serve all children, don't always. How can they when education funding has been cut left and right? It's abysmal really and pains me to acknowledge this.

I met a woman recently who had a son who is on the autistic spectrum and was dealing with many of the same food allergies that Shea is facing. We chatted gluten-free products and recipes and then jumped into the fray.

"How is it going at school?" I asked. She got a pinched, frustrated look on her face and replied, "Not well. They were very concerned with wanting him to just hang up his coat then sit down and shut up. He couldn't draw or cut paper the way he wanted to. It was very frustrating."

"Was?" I think. She told me they decided to pull him from the public school system and do home schooling which so far had been working fine for them. I asked about her 2nd child, a typically developing girl, "No, we won't send her to public school either."

This exchange has really stuck with me. First, no matter how you feel about public education, you make educational choices individually for each kid. If one thing is not working, you try something else. But, I was sad. One bad experience with an overwhelmed Kindergarten teacher chased this family away from our public school. Sometimes that's all it takes.

I see it as the bell curve. The majority of the kids get served pretty well, although that is always debatable. The kids that happen to be on the edges? Not so much. If your kid is on the edges, that can be a very frustrating place to be.

It reminds me of this trend to create "gifted programs" or "accelerated learning" in elementary schools. It seems parents just love hanging this sort of tag on their kid. We went through a period here, where there was a lot of pressure to start tracking and testing as early as Pre-K! We already had testing at 3rd grade to divvy the kids up for math in 4th & 5th grades but now they were pushing for more! The whole shebang! Let's test their little personalities right out the door and label them at 6!

Needless to say, I was really, really, REALLY against it. This is a big topic but in a nutshell; testing is not and shouldn't be the prime designation on determining a child's skills and attributes. Can't we let the kids just be kids for a while instead of shuttling them off into a category? "Here Johnny, you belong in the smart class! Bobby you belong in the below average class!" Does anyone else see the self fulfilling prophesies this much be creating? Not to mention the self-inflicted stresses labeling can cause.

I remember one of the arguments to pursue a gifted program was to give the smart kids appropriate work to do. By all means, go for it. Teach to the highest skills in the class and watch some of the others come up too. Create more opportunities for individualized instruction so that each kid can reach as far as they can. Give the teachers more professional development so they can recognize and work with a child who is gifted. All of the above probably just equate to more money needed; lower class sizes and more investment in our teacher's training. Don't hold your breath.

Maybe the new administration will take a long, sober look at No Child Left Behind and see if there is anything salvageable there. We can only hope.

School: when it isn't going well, Part 2

Communication is obviously the key to any relationship. So, when my non-verbal kid started school, one of my biggest worries was he wasn't going to be able to tell me if he didn't like it. Or if he had a problem with a teacher or another kid. I still worry about stuff like that but because Shea is in a Developmental Preschool you would think that the teacher would be sensitive to that issue.

Lesson learned; even though it should be true doesn't mean that it always ends up that way.

I found out Shea was having some problems in school by accident. His teacher described his usual classroom behavior as: anxious, stressed, threatening, angry and that he was "attacking" other students. These characteristics were described in a multiple choice questionnaire that the UW CHDD wanted his teacher to fill out before our full neuro-developmental screen last Spring.

When I got it back from the teacher, I was stunned. There was no explanation attached, no note saying please call if I had any questions, etc. It just seemed odd. I barely recognized my kid from her description.

I sort of sat on it for a while but grew more and more upset and concerned. I gave copies to our private specialists which is when my head popped off my body! Both, OT and Speech Pathologist were equally concerned with the behaviors described and asked for more detail. The UW CHDD was surprised and quizzical about the teacher's questionnaire because it didn't seem to jive with what they were seeing from Shea either.

I figured it was time to ask the teacher directly but I always wonder about the best way to approach a teacher on delicate issues. In writing? So that you can edit, re-edit and make sure you do not offend plus document the issue all in one fell swoop? Or in person, face to face? Over the phone? What really is the best way to do it? I still don't know.

In this case, I called the teacher and asked her point blank. I didn't go very well. She was defensive and dismissive. I suggested it was time to have the IEP review, she suggested bringing in administration staff. Oh boy! This sure mushroomed fast.

So much of life is posturing, this situation was no different. I remember going to the meeting with Jake and there were 6 or 7 to our 2. It would be pretty normal to feel intimidated or out numbered in a situation like that. Oh, and it was plenty uncomfortable but I have a trick to share. Bring a tape recorder. It doesn't really even have to work although if things get really contentious, I bet you would be glad to have the conversation documented. At the beginning of the meeting, quietly whip out the recorder, hit play and set it down in the middle of the meeting table and watch the mood change.

Another good strategy is to go to the meeting with suggestions, so you aren't just complaining but offering solutions too. My suggestions were; I wanted a different teacher for Shea the next year and I wanted consistent communication from his current teacher for the remaining of the year. I suggested that I would put a spiral notebook in his backpack and if any of this "angry, threatening" behavior occurred they were to document the situation in context so that I could reinforce appropriate behavior at home. The administration did not like me dictating his placement but they made sure it happened.

And, what ever happened to all that weird, scary behavior that I had never seen before? The teacher never mentioned or documented any additional occurrences. Am I to guess it sort of just "went away"? Good question.

Underneath is all, I think the teacher and Shea just didn't click. Maybe he was a lot more work than the other kids or they didn't particularly like each other. I am realistic. This will happen. But, any teacher still needs to hold to appropriate standards and practices. If they don't, it your right and responsibility as the parent to call them on it.

Call it parental advocacy. Call it squeaky wheel. Call it what you want but no one else will do it for your kid. After all, you are the expert on your child, sometimes you have to be aggressive.

IEP or Individual Education Plan

I will admit right out of the gate that I HATE standardized testing. I have been a strong critic of "No Child Left Behind" from the beginning and not only because it is an unfunded mandate.

I believe that standardization forces teachers to teach to the test. It also forces kids to learn only what the test asks. I think it stunts creativity and alternative forms of learning for both teachers and students. And, I worry that kids that do not test well view themselves as dumb or unintelligent just because of a test score. I wish with all my heart we could go back to a more well rounded curriculum and that teachers were encouraged to bring their own creativity and interests to lesson plans instead of having their job performance linked to how well the kids pass a standardized test. Alas, I fear that the genie is out of the bottle on this.

So, what does this have to do with Shea? Well, when a child with special needs turns 3, the school district makes their formal assessment about need. A whole fleet of standardized tests are given which determine what services will be provided through the school district. They use these tests as a starting point to determine the IEP for the child. By the way, this entire round of testing happens again at age 6 as the child moves into Elementary School.

I admit I probably had a pretty bad attitude as I headed into this testing when Shea turned 3. First, all the testing is verbal. How do you do accurate standardized tests on a non verbal child? Good question but no easy answer. There was a lot of paperwork, checklists and questionnaires for the parents to fill out. The teachers and specialists were very supportive and wonderful, I just didn't have any idea what was coming or how I would react.

A meeting was scheduled to talk about all the testing and Shea's needs. I didn't really realize how hard it would be to sit and hear the results; the tests determined his language at 9 month old, that his IQ landed below average, etc. I remember pretty much crying through the whole thing; I just kept going through tissue after tissue.

My husband was home with Shea during that meeting and silly me, I went alone. Big mistake! DO NOT go alone to an IEP meeting, especially the first one! Everyone, no matter how tough, will need a support person that first time around.

I remember one of the specialists asking me what had happened that made me so upset. Not her words exactly but that was basically the gist. I said, "I guess, I had promised myself that I wouldn't freak out until Shea turned 3. Now, he is 3 and there is no way for me to deny it anymore." In a word, I was freaking out and the future seemed very dark and scary. They all just sort of sat there looking at me with compassionate, somewhat embarrassed looks on their faces.

It was true. I had tried to stay light, breezy and not over react. I set Shea turning 3 as a threshold for my full scale worry. Well, when it hit; it was fast and furious.

My husband was much more taciturn. He knew that Shea was intelligent and that he would be fine. Was he sad? Yes. Was he concerned? Yes. But, he wasn't a puddle like I was. It's nice to have a rock in the family and he is mine. Love you, honey. XOX

Looking back, I think it took a good month to just come out of that depression fog. I had good friends and support but I needed an expert. I realized that the school would never be able to give Shea the sort of intensive therapy that he would need. They just can't afford it. But, how does one go about choosing a therapist? Hopefully, you have a good friend that can refer you to one, and I want to send out a shout out and a blessing to Sally for helping us find ours.