think first, share second

Parents of a child with special needs never need to be reminded of everything they have to worry about.

The most prevalent concern is their child's future. Other challenges will come and go, but the future available to their son or daughter may forever haunt them until the day they leave this earth.

I refuse to believe that the best my son has to look forward to is a lonely life in his golden years. If I went around focusing on that, I'd have to medicate myself to numb the pain.

I do accept that my son will have a happy, fulfilling life. People like Hayden, and Hayden likes people. That will never change.

I wish that the other people-- the ones who don't think before they share depressing, unproductive thoughts-- kept their thoughts where no one else can hear them.
I am sharing mine because they're worth listening to.

You have a tough day? Vent. I do. It's healthy. But don't go around making definitive statements that circumstances will never change. It's one thing to raise awareness, and another to raise fear.

Do you really think society would have come this far if we focused on the latter?

We are all in a much more optimistic place than any generation before us. And our children have reason to be, too. In the meantime, while we spend our waking hours advocating, thinking, preparing, and so forth... I hope we all agree on the end goal.

Our children will have unprecedented opportunities.

the "c" word

We arrived at the principal's office on Thursday afternoon to resolve our questions regarding this new Multiply Disabled (MD) program.

He is a nice man. He stood as we entered his office, smiled, and extended his hand. The Child Study Team (CST) lead was there as well, and it wasn't until the start of our meeting that we learned the case manager was in fact joining us.

Communication. Information is useless without it.

So there we were assembled around the meeting table in the Principal's office, with Dan on my right.

I know the woman to my left (case manager) is on the defensive for feeling like I went over her head. Which I did.
I know the woman to her left (her superior) is all too aware of the fact that the principal shouldn't have to be involved in these types of discussions. Which he shouldn't be.
And I know the man to her left, is in agreement.

But when I've repeatedly asked our Case Manager the very same questions I posed to the Principal, her responses were vague and often contained, "I'm not necessarily privy to the same information on an administrative level."

And when I've repeatedly asked her superior, the CST lead, her responses were centered around staffing the MD program (which still doesn't tell me about the program itself), and often contained an impatient, pushy, and quite confusing summary of why this new program would supposedly meet Hayden's needs vs the current one.

I don't want us to ever be "those parents" that the school begins to resent (for lack of a better word). But the fact is before the CST was suddenly outsourced as of a couple years ago, due to budget cuts, we never experienced this sort of miscommunication. Not to mention the fact that the whole economic climate also contributed to our question of funding this MD program, and nearly made us suspicious of some sort of hidden agenda.

The Principal spoke first and maintained that the current Language Learning Disabled (LLD) class Hayden is in, in the morning, has been functioning as both an LLD and MD class. And that the LLD class is going to grow, and there would still be a need for an MD program.

In short, the administrators agreed there was an academic need for this MD classroom and money became available to create it. In the words of the principal, when we asked why the urgency (mid-year) we were now being told it was a simple opportunity "to strike while the iron was hot". To translate, it is realistic that there may be more fiscal cuts any given year. So if their central office is suddenly telling them they can budget the money now... spend it.

There are legitimate plans for the program to grow, and in the meantime they may combine with the LLD class for certain activities. So to calm one of my fears, no, this MD room is not an indefinite class of two. 

But when the only comfort that Hayden's case manager could previously offer us as far as the program growing, had something to do with the idea of a child possibly moving into the district at any give time? Well that's fascinating. We've been trying to sell, and buy, in this exact district for more than a year now. Our own Realtor told us that over a recent 12-month period, a whopping 13 homes sold in this immediate area. But hey who's to say that a bunch of kids won't suddenly move here and all of them be age-appropriate, and have the need for, this exact new program.

The fact is, I do appreciate where they are coming from (both the case manager and the CST lead). The case manager was simply hired by the district (less than one year ago), already the second new staff change since the recent budget slash, and forced to get up-to-speed on her own new case load in a very short amount of time. To add insult to injury, she's also working with a CST lead who was basically dragged back into this situation after already having one foot in retirement.

All this because our governor mandated the most drastic (needless to say, unprecedented) cuts, which basically forced the education administrators between a rock and a hard place. And all staff members were in danger of that chopping block, including the ones that were hired to accommodate children with special needs. "Politics" is as much a four-letter word as any of the others.

Clearly we are not oblivious to external circumstances, but obviously we can not just go about accepting whatever anyone suggests for our son. So when something unusual happens like an unexpected program popping up, mid-year no less, and every time we pose questions we are getting vague answers... we will never simply oblige. Truthfully I think the administrators should be more concerned if we did.

The woman who used to be our point person on the CST, prior to the "team" being outsourced (if you still want to use the word team), had her doctorate in child psychology. She was smart, caring, tough yet logical, and honestly just paid attention to all perspectives. She was our go-to for all things Hayden-related. Our first line of defense for seeking, or discussing, information. I only knew how unusual this was from the horror stories I'd learn from other parents of children with special needs, particularly within the community of those affected by fragile x. Each state has their own resources, some of their own laws, and certainly not every family is going to be so fortunate as to have the best team fall in their lap.

But when we were having our big-little meeting in the principal's office and the woman to my left finally chimes in to defend herself, I refuse to sit there like I don't know better. She is going to repeat the whole idea of not necessarily having all the information, vs the administrators (gesturing to the people to her left), and offering to define her role to me... no. She is not just a liaison. I know our resources and she best not suggest, especially right in front of these higher-ups, anything contrary.

I turned my head to address her directly and before I knew it my almost-shaking voice spoke (something to the effect of), "Actually, in the past our case manager was the person who held all this detailed information. So unless the role has changed, that is what we're accustomed to."

Fast-forward to the closing. We were all in agreement that H would continue to arrive to the LLD class in the morning for the remainder of this school year, and then a regular mainstream homeroom beginning in September. It is a big deal to us that he enter school and report to a room with other students (plural)... and have a sense of belonging... and have a typical place to put his bag and hang his coat.

Next week we will iron out a more detailed scheduled and sign on it, but it will look like the aforementioned. Then he will go to this MD room, but only during the morning when he's not in his individual therapies. The goal is to have the majority of his afternoon continue to be mainstream.

Oh... one other recent development...
camp.

The director from that day camp we're hoping H can attend, did go to the school to observe him. She was definitely optimistic upon meeting him so even though we have many more details to consider, I am trying to be optimistic as well.

She also told me a couple things I already know but will never tire of hearing: his teacher is fantastic, his personality is infectious... and that smile. 

exactly my point

I believe I mentioned something about the recent birthday party in my last post, for a boy in Hayden's (mainstream) kindergarten class. Dan and I were slightly concerned about the fact that it was a bowling party since the first time we tried that with him, it didn't go over very well. We took him bowling with my parents and he accepted wearing different shoes pretty well actually, but it's loud in there, a lot of people, lights etc, just an over-stimulating environment. Not to mention the waiting in between turns is not easy for H.

Well, at the birthday party his classmates were so happy to see him (the birthday boy even gave him a little hug), that we were optimistic this could go much better. Perhaps he would follow their lead and not be as affected by other factors.

Overall Hayden did very well, but he did become anxious and upset near the end of the first game. The break for a pizza lunch helped, but we could see H sort of having this internal struggle between wanting to be there but having a tough time handling it. A few of the other classmates were noticing, just glancing every now and then. Not mean or anything... they are somewhat accustomed to his occasional behaviors from school, so it's not different. But if I was in their shoes, I would notice too. Especially at that age.

There was a lesson for me in all of this aside from the fact that we need to keep including him, and the worst thing we could have done is kept H home just because we knew it might be difficult for him. So that wasn't even an option.

But the real learning experience...
I emailed some pictures to the birthday boy's mom. She sent a message back to thank me for sending them, and also replied, "I'm glad Hayden had a good time, [he] really likes him so if you want to ever get the boys together for a play date let me know."

I cried.

Granted I was just watching this episode of Parenthood where the character of the kid with autism has a play date with a classmate who is in a wheelchair... not to mention I'm nauseous with anxiousness over a meeting tomorrow... but still. This is exactly my point per my previous post. Hayden needs to be around other kids, and other kids do enjoy being around Hayden. They really do.

The first thing Hayden said to me when he woke up this morning, was, "Thank you for coming to my party"... as in valentine's party for the kindergarten class. Emphasis on the word class.

I hope I have something else positive to report on, following our meeting tomorrow to finally iron-out this MD program situation. We've been summoned to the principal's office to speak with him and a member of the CST.

I hope they've heard my point.

i don't even have asthma

So last Thursday we attended a (quite intimate) Meet & Greet at H's school, with the new MD program teacher. (If you're confused read the post from Tuesday, December 6th-- "Hayden, MD".)

She seems great. But there we are in a room with the current LLD teacher, the Vice Principal, the Child Study Team manager (or whatever her formal title is-- the one that H's case manager works with), one other parent, her case manager, and the new teacher.

Hardly the appropriate setting to ask questions, even though they kept asking if we had any. I finally blurted out, "if one of our boys is absent, is the other one just going to be in here by themself?"

I mean, when they told us they were beginning this new program, and explained that H is one of the students the have in mind for it, they left out the part about him being practically the only. The other student in the class has autism. He is verbal, but they're still working on encouraging his social skills. He also has some austistic habits such as licking his sleeve or arm, and the hand-flapping.

I looked up at the bulletin board and there was a whimsical character of some sort that says "Our Class". There are maybe five or six coordinating pieces around it-- one for the teacher and the others for the students names. Three pieces were blank, and then there was the teacher's name, Hayden's name, and the other boy. I felt sick. This ain't no mainstream public school classroom.
The following morning his current K teacher (bless her heart) called me to give me a heads-up that I'd probably hear from his case manager, very shortly, about a signature page to begin H's transition into this MD class. (Yes, when we asked the night before about when this will begin, they said, "tomorrow and/or Monday".)

So just to summarize... we heard about the program the end of last year. The only updates I ever got along the way, were in regard to the interview and hiring process. Not once did anyone explain why the introduction of the new program, and why such urgency. Next thing I know Hayden's AM teacher (LLD class) is asking us about dates for a Meet & Greet she was asked to coordinate. I was informed of a tentative date from her, before the Case Manager ever even called me.

Back to Friday morning and I am one heart palpitation shy of breathing out of a paper bag. I posted a sort of emergency feedback request in a closed fragile x group on facebook, and quickly gathered as much ammo as I could before my phone would ring and it would be the Case Manager.

When you are faced with a challenging situation, people will offer encouragement... tell you that you’re the best mom. Especially parents of children with special needs... that we are superheros. And our kids are so lucky to have us. And I have always been so uncomfortable with that because a parent has a tough job period. And I honestly don’t believe I deserve any more credit than the next parent, even though our circumstances may not be comparable.

But yes, sometimes we (parents of such children) come across other people, or are faced with certain situations, that require us to put this superhero cape on. For each of us, the letter on the back may be different. I do not imagine mine to be “M”, or “C”. It’s a big, bright, straight, strong “H”. Because I may be the one wearing it, but he’s the one giving me the strength.

Lately I keep having to put that damn cape on that I wish I never had to friggin wear in the first place (but I am at least forever thankful that my child has absolutely no idea when I wear one). I will admit that as I play this role of mom & the Advocate, I can picture that letter H & remember the encouraging words of those closest to me. That morning I told myself I will swallow that awful lump in my throat when I need to be my son’s voice, and I will not only be heard I will be listened to.

I never like to be that person who asks for encouragement— just a personal thing with myself. But that morning, I said to myself fine. I am a superhero. I’ll take it.

And I get on this call with her, and I still have zero understanding why she immediately wants to drive over a signature page to start this transition for Monday. Finally I said she could fax it over, but I would likely return it in his backpack after the weekend.

Still unsettled, I went into the weekend promising myself I would not think about this crap until Monday. Saturday H had a classmate's birthday party to go to, and when I saw the birthday boy go over to H and give him a hug because he was happy to see him... I felt like calling that Case Manager right there on the spot and giving her a piece of my mind.

But this morning arrived and I knew we would speak again. Turns out she meant to fax me a 'Consent to Amend the IEP Without a Meeting'... page. Absurd. As if I should just sign on something without even knowing what the hell I'm agreeing to.

She also faxed me a proposed transition schedule today. I don't even know how many conversations have taken place during the last week, but at least I finally feel like I'm being heard.

When H's Case Manager ended the call this afternoon by saying she's impressed with us, thankful for all the knowledge we've shared, & that I'm the one she has learned from... I know there's hope.

I refrained from pointing out this is only the beginning, but I'm thinking she figured out my motto by now: you do right by my guy I'll make sure every damn administrator in the whole district knows it. In writing. You do wrong by my guy...
that cape I was talking about can turn into a broomstick.

For now I am agreeing to a half hour daily transition pending consideration of my additional comments page, attached to the signature page. To pull a few clips to paraphrase:
"...we do not want Hayden to perceive the setting as isolating. Nor do we want other students to perceive his inclusion in the MD program as being isolated."
"The learning potential in an environment with such an ideal student-teacher ratio will be beneficial. However, we do not want any of his academic progress to cause his school experience to be counter-productive in other areas, such as the socialization he continues to benefit from in Kindergarten."
"Our expectations are to build up to a schedule that will be enough for Hadyen's academic instruction needs, but never the majority of his day."
"Hayden will not have the same benefit from replacing mainstream class-time with socialization-time only during lunch, recess, music, and other specials which are here & there."
"Overall, Hayden needs to spend an appropriate part of his day around peers who are going to teach him behaviors that are beneficial."

Our next Progress Meeting is February 23rd.

Haven't put the paperbag to my face yet, but I'll keep it nearby.

the pleasure is all mine

So Hayden has a pet fish now (it was a clever favor from a friend's birthday party) and its name is Drake.

After school today, I caught Hayden when he was just about to drop an apple in the little fish bowl. We have already explained to him on several occasions that he can not put his fingers or hands in there. (Day Two he dropped in an entire canister of fish flakes.)

Minutes later I brought Drake to a different room following H dropping a large sticker in his bowl, me having to take it out, and then H sticking his hand in there trying to catch the terrified goldfish.

His behavior sort of went downhill after that, and ultimately he ended up in a time-out for not listening to me. Oh, and for wiping his hand on the front of my shirt after I told him to take his hand out of Drake's bowl.

Hours later, I was putting laundry in the dryer and H came in the room and said something about "show me" and "house". Not sure what words were in between, but he was reaching for my hand to lead me.
I told him to hang on a minute, I went to put a new box of tissues in the bathroom, and then followed him to the living room.

He started fidgeting with something and I finally asked him what he wanted to show me. With that I looked around and realized the entire living room was clean.

I guess that was his way of saying sorry. I thanked him and told him I was very proud of him. Then he helped me put some of the laundry away in his room by sorting socks.

I thanked him some more and he said, "my pez-er."
My pleasure
Unbelievable this kid.