A family's story

Posts tagged ‘Special Needs’

End of the School Year

Those of you who come around here often know my boys struggle with transition. It does not come easily for them, and it takes a lot of work and preparation in order to get them through some of the bigger ones. We have been prepping for the end of the school year for a while now..and we’re still not quite “there” yet. But we have to be…soon…because on Tuesday my boys will be done with 3rd and 1st grade.

I must admit, every year since my boys have been in school, I cry on the last day. I can’t quite explain it, but it’s an emotional response to my boys moving up and onward. Maybe the transition preparation is as much for me, as it is for them. 

I know that I am going to have tears streaming down my cheeks on Tuesday as I send them off for their last days. Both Tate and Jake have made progress and gains this year. Jake is doing math, people. Math.Something clicked this year, and he is finally able to do simple math without breaking down or turning into a puddle. He is reading chapter books. CHAPTERS!

Tate has made social connections to the peers in his class. He talks about his friends. He has even had a crush! He has spontaneously mentioned activities that have gone on in the classroom. He has told us about his day. And it is not a script. Six months ago, that wasn’t happening!!

So, you’ll have to excuse me on Tuesday as I wipe the tears from my eyes…tears that release the relief that we’ve made it–successfully–through another school year. 

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Heavy

I met with Jake’s teacher and resource teacher today. They are seeing the same regression that we’re seeing at home. The inattention. The lack of focus. The copious amounts of impulsive behavior. The loss of independence. The loss of our “Jake”. In the 2 weeks since he’s been on the new medication he has lost so much. Yes, the tics have stopped being so pronounced, but he’s anxious, perseverative, and impulsive. Off the record, there are rumblings of a self-contained classroom next year if he doesn’t start improving. Self-contained. 

All of the glorious progress that we saw from last February until the end of this January seems to have vanished. *POOF* Jake is requiring constant input from his teachers. He is melting into puddles on the floor and in his chair because the work is too hard. It’s just too much. He’s falling back on the old pattern of depending on his old friend rather than branching out and playing with the boys. He’s requiring more help with self help chores at home. He needs constant reassurance and his anxiety is through the roof.

We all know he is capable of achieving great things. He is making such strides. Or was. I have to get him off of this medication. It is ruining his life. Literally. He knows he is out of control. He keeps talking about his brain going crazy…and he has been writing so many notes of apology to me, Hubz, Tate and Cole when he’s impulsive and inadvertently hurts one of us. It’s breaking my heart.

It all feels so heavy. All of this. The worrying. The parenting of a special needs child. Of two special needs children. The calls to the doctor. The shuffling kids from therapy to therapy. The insurance EOB’s that pour in. The expenses. The knowledge that my children are different, wait, that their neurology is so different and that they just don’t fit quite right into the standardized world.

And as heavy as it feels, I know I am not alone. I know there are other parents out there struggling with “the weight”. I do find comfort in knowing that there are others out there who understand..and who understand that when I say “this sucks” and “it’s not fair”…they know that it’s just my way of processing through the hurt of seeing my children struggle. So, even with this heaviness within me, I will pick myself up, and keep moving…because I have these beautiful children who deserve no less. And I will hang on to the hope that I’ve seen before..that my heart knows is out there for a better day.

 

 

Fitting In

Yesterday Tate had his first soccer game. He is playing on a VIP team with the local AYSO. The program, as some may know, partners special-needs children with a buddy, someone aged 10 and up, who helps them up and down the field. But, kids like Tate get to play, have fun, and have success with a sport. It’s not therapy. And they get to fit in.

As we got Tate dressed at home, his anxiety started to rise. Hubz and I were excited to help him get into his bright green and blue uniform. Tate didn’t want any part of it. He kept trying to take it off. We compromised. He got to wear his beloved Spiderman shirt underneath his jersey, with the promise that once the game was over, he could peel off the jersey and just wear Spidey. Then we had to ask our sock-averse child to put on soccer socks…itchy, squeezy, hot, soccer socks that are about 2 sizes too big, but were the smallest ones available. He kept asking to take them off, insisting that they were “squicky”. I quickly threw his shin guards on OVER the socks. In the VIP league, they are allowed to do this–thank GOD!

He wanted his stimmy stick. We couldn’t find it. He chose to vocal stim. We piled into the car. He asked me about 5 times if it was ok to wear Spiderman after the game. I assured him that it was. He asked if the game could be over now…and I told him no. First, practice, then game, THEN Spidey. He stopped and shut his door. The entire ride up to the field he scripted. A lot. Whine-script-whine-script. Hubz and I got a Dunkin Donuts coffee as a pre-emptive treat, as the PTSD from our foray into rookie-league baseball was kicking in.

When we arrived at the field, the VIP green jerseys (shirts–not quite sure what they call it in soccer lingo. I need to learn, I guess.) were sprinkling the field. The buddies were mostly wearing green tie-dye. We wandered aimlessly into the revelry. I found a coach and asked where we should be. She directed us to the little field where Tate’s team was assembling. She explained that because it is Tate’s first year, and he hasn’t had any official soccer experience, he is on the “basic” team. These children require 2 aides on the field. They do about 20 minutes of practice time, and then they play as close to a game as possible. At the end, they try to line them up and have them do the “high-five” that the regular AYSO teams do.

On our way over, we saw Tate’s school social worker’s family. Her son plays on the mid-level team. She was one of the first people to recommend this program to us last year, as something fun for Tate to do, and she wasn’t even his social worker yet! We ran into another family from our school. Their daughter has been playing VIP soccer for 5 years and loves it, she’s also mid-level. We chatted and then scurried our kids to their respective fields.

Tate was introduced to his coach, a friendly, gentle college student who is in her second year of coaching the VIP program. She got down on his level, established eye contact, and he gave her his attention. She introduced him to his buddies, W & C. W is the older son of the family we know from school. C is a new volunteer, and both boys were a great match for Tate. Tate loves hanging with boys..and seems to respond well to male role models/aides. They ran up and down the field with Tate. They were patient while he insisted on picking up the ball and placing it “just so” in front of the goal so he could kick it in. They reminded him that it was a foot sport, not a hand sport. They smiled and waited while he came back to the sideline after every goal to get a high-five from me. Every. Time. I showed Tate how to give his buddies high-fives…and that seemed to work to keep him on the field and off of the side-line.

After about 20 minutes, the coaches got Tate and his beginner-level peers in a big circle to do warm ups. The head coach asked if they were ready to follow directions. Tate and one other boy said, “yes”. I smiled. They started to do their warm-ups. Tate got right into the action. He kept up with the coaches. After an exercise was done, he’d ask his buddies for high-fives. They gave him one, each. Each child got to pick a card with a warm up exercise. Tate chose a red card that indicated doing arm circles. And arm circles he did. Big ones. With loads of swooshing. Most of the other children on his team were in their own worlds…but Tate, Tate was in the thick of it. He was with people who understand…he fit in.

The coach came over to explain that they were going to start their game. She asked if we had any questions. We didn’t really.  I said I was amazed by how Tate’s anxiety had plummeted since we got there. I remarked that he seemed comfortable with his teammates and his buddies. She said he was not anxious at all, and that he was into it. With that, she ran to the middle of the field to start the game.

While the kids started to organize themselves on the field, I looked around at the parents who had kids in the beginner group. It was apparent that they had all been around during (at least) the spring season. Everyone was catching up, asking questions about activities/therapies/doctor appointments/procedures over the summer. I felt like a fly on the wall…no one was shy or hiding what they and their children did over the summer. I wasn’t involved in the conversations, but I wasn’t excluded, necessarily. The parents all said hi and then went about their catching up. Let me stop here and just say. Wow. I will never, ever (ok, at least for the time being) complain about the 30+ hours of therapy we did. That is nothing compared to what some of these families do. And we see progress. Some of these families are still looking for “the thing” that will help their child walk/talk/connect. I was humbled. 

Thinking about how blessed I am, how WE are, I turned my attention to the field. I watched as my son, the boy, who, in a typical setting would have melted on the sideline and couldn’t have been coaxed onto the field, ran up and down the field. He scored goals. He became a ball hog. He was giving out high-fives like a politician running for re-election. He was in his element. He was with people who made him feel comfortable and like a part of the team. There was no sign of his anxiety. No one staring at his differentness. He was happy. He was smiling. He fit in.

 

Editor’s Note: I would like to thank our social worker and Alysia for sharing their experiences with this program. I would have never imagined how welcome we felt. How for the first time in, like, forever, our son felt like he was with “his people” and had fun just playing with a bunch of kids. Kids like him, or not…but who understood that for those 60 minutes, how wonderful it was to put aside the anxiety/obstacles/quirks and play a game of soccer for fun.

 

 

Preparation

My older boys start school 3 weeks from today. Before I do my celebratory cartwheels down the block, I have a lot of preparation to do for our foray into the 2012-13 school year. A lot. At these times, as my anxiety starts to rise while I make and revise my list of “Things to Do”, I wonder if families of “typical” children have as much stress…it’s something I would have asked my mom, but well…yeah….

Don’t get me wrong…I am certain that every family has a certain amount of stress that comes about with the beginning of a new school year. New teachers, new classes, more demands on children in terms of expectations, etc. I know everyone has that “Eleventh Hour” stress of “will-we-get-it-all-done-in-time”. But is there the utter feeling of panic ?

Monday is the district-wide residency event. Every year we have to prove where we live. We need not one, not two, but THREE  identifying documents. I have those set aside for our big day. That day, once we prove that we are, indeed, living well within district lines, they will hand me 2 envelopes. In the envelopes will be my boys’ teacher assignments. There are 3 sections of third grade at our school. Just about everyone that I have talked to wants the same teacher. That teacher happens to be Jake’s math tutor. I wrote a letter to our principal last spring, detailing the ways in which Jake learns/struggles/benefits in school (this supports getting his math tutor as a teacher). I talked to his IEP team about his placement. I have everything crossed from my toes to my eyes. Please, oh please, let us get this teacher. Jake is comfortable with her, she “gets” Jake, she pushes him enough, but not too much, and she is all about working with the resource teacher to enhance the learning experience.

Once I get the envelopes (and yes, I totally feel like we’re going to the Academy Awards…but without the red carpet…the fun, awesome “swag”, and the pre-and post-parties), I will be sending a message to Tate’s teacher regarding his schedule. The district wouldn’t meet with us at the end of last school year to work out a schedule for this year to accommodate ABA because schedules aren’t final until August. Ugh. I want to find out what classes and therapies he has when, and when I can pull him for the day during the week so we can do ABA. I am currently developing an ulcer over this.

Tuesday afternoon we get the official results and report from Jake’s evaluation. I will barely have enough time to digest what’s going on with my kiddo before I’m on the phone with Jake’s regular ed teacher and resource teacher (she at least will stay the same this year) to discuss and figure out if we need to meet again to adjust his IEP. I am fairly certain we will, because, well, they want to pull him back to a half hour of speech services (from his 60 minutes in grade 2), and well, his primary qualification for special ed is speech/language. I know…right??? The doctor informed us during our parent meeting that she totally disagrees with that and will word her report as such. (SCORE!) I hope that we can negotiate it for Jake.

Tate’s therapists are reading a social story with him right now. It is about his new school. He is doing ok with it. He knows the school, as it is the one that Jake attends. We have that in our favor.  I want to bring him to the school next week for a little walk through. We don’t need to go into his classroom, but I want to have him walk the halls, see the gym (which he hates thanks to all of the events we have attempted to attend there over the past 3 years), see the cafeteria, the library, and do the walk to the classroom. I’ll let him play on the playground, and walk in the parking lot. He can sit on the benches outside and check out the flag pole. His ABA therapists are totally game. Just have to make sure that the school is.

The more I read about special needs parenting and advocating, the more I realize that I need to put together packets of info for the teachers. Sooo, I am working on getting these together for the boys’ teachers. It’s the least I can do to help foster a mutually beneficial experience for everyone…but it’s just another thing that needs to get done to help my boys succeed.

We are starting the school year evening and bedtime routines next week, as well. I am going to try to get them to pick out their clothes the night before. I want to instill a reading time before bed, since no one wants to read when they get home from school. I am also hoping that limiting tv time right before bed..or within a half hour, helps a bit with readying their bodies for sleep. It will take a couple of weeks to get this established, so we have to start early.

Even though I get a certain “high” from school supply shopping, this hasn’t been done…I need to do that, too. I have discovered that none of the males in my household like this particular adventure. I have tried to pick up a few things when I go to the store, but Tate is quite adamant that school supplies are stinky and gross, so he’s had a couple of those I’m-laying-on-the-ground-and-writhing-until-you-let-us-leave moments. It was great. Especially when Cole joined in the “fun”. The supplies this year, at least, seem reasonable, and I won’t have to try to find a 25-pack of “white paper lunch bags”. What the what?! Yes, last  year I had to supply a package of 25 “white paper lunch bags”. I have absolutely ZERO idea what those were used for in the classroom. ZERO. Never saw those 25 bags again (Party-City, by the way, carries them…) Oh, and we had to buy a package of 2-gallon sized Ziploc bags for Tate’s classroom. Uhhh…thankfully my neighbor was able to give me some insight–Walmart (shudder).

So, we have all this prep work, in addition to trying to arrange some outside therapies, ABA therapy, Jake’s swimming, religious education, and possibly tae kwon do. Of course, I have the added worry about how anxiety will affect the boys, and whether they’ll be able to attend in class, and focus on homework once they’re home, and juggle their therapy and schoolwork, all while trying to allow them to be “kids” as well.

I wish it were as simple as packing up a backpack, buying a pair of new sneakers, giving my kid a few bucks on his lunch card, and sending him off to school with a kiss. But, alas, that is not our world. It takes a lot of preparation…a lot.

 

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