A family's story

Posts tagged ‘Things that are hard’

Ensuring a Good Fit


Somehow, and I’m not exactly sure how we have gotten “here”, Tate is finishing up fifth grade, and we are prepping for middle school. Sixth grade. We are trying to determine how to make middle school successful for him.

We had our IEP meeting. We discussed his strengths. We discussed the challenges he faces. We agreed that his placement is the best option at this point in our district. While I understand the placement, I’d be remiss if I didn’t state that I worry that he won’t be challenged academically. He is more intelligent than those standardized tests indicate, that’s for sure. When he gets bored his “maladaptive” behaviors begin…he’s good about communicating non-verbally when the situation isn’t right. I will be monitoring the situation very closely next year, not hesitating to call meetings as needed to keep him on track.

Currently I’m frustrated that it took 6 months for the district to allow our BCBA to come observe the classroom and give some feedback as to what might help Tate. It is also exasperating that no one truly seems to understand that autistics have sensory needs that need to be anticipated and intervention needs to happen prior to a meltdown, not as a reactionary solution after the behavior occurs.

The hard truth is that there really isn’t any program in our district that is a great fit for Tate. We know that the general education setting, even with a 1:1 aide would be too difficult. The instructional program pulls back on adult support, and Tate requires many adult prompts to stay on task and to function in the classroom. Hence, he will be in a restrictive classroom of kids in grades 6-8 who require significant adult intervention. It also has a life-skills slant to it.

I visited the classroom where he’ll be in the fall. The observation itself went smoothly. The teacher is vibrant. She’s respectful. She has fun with her students. Most importantly, she treated each student as a PERSON. Even in my brief observation, it was obvious that the students each bring their own set of learning issues to the classroom. She was able to differentiate her approach towards the students. I was keenly aware of the respect she showed her students. She wanted to be there with them.

Unlike a fitting room with a new pair of jeans, I can’t try each one on for size and comfort. This is somewhat like a stitch fix order. We are making an educated guess at the fit, and when it comes down to it, we hope it fits like a glove..or maybe will work with slight tailoring. Fingers crossed.

Upside to this is that nothing is ever permanent. We can always call another meeting…but in the meantime, I hope I’m not lopping off a huge chunk of length for him that causes Tate to be confined to something that won’t work well in the long run.

Ah, the challenge of parenthood….always wondering if the decision is the best one.

Not without a Fight

This week the interwebz were abuzz with the whole DSM-V changes and autism hearings in DC. When media covers “the plight” of parents of special needs kids, they should focus on the insurance hullabaloo that we parents face. This frustrating, red-tape tango-ing, bureaucratic baloney that stresses us out. If we find something that works for our child, helps him or her succeed in life, why do they have to put a limit on it? A cap? This, this insurance baloney is the “burden” we have to deal with. This part of it is what makes parenting so damn hard. For as long as I can recall, there has been a rumbling, an effort, an objective out there, somewhere, for improved health insurance. Insurance reform is a hot topic. Currently, insurance coverage is a big deal in our house, as well.  Hubz carries some good coverage. We pay a lot for it, more than I think is necessary, but that’s another topic for another day. We’ve never really had to worry about a procedure, evaluation, or therapy not being covered. I know how blessed we are. Because of our plan, Tate’s therapies aren’t capped at “x visits per year”. Instead, we pay a slightly higher deductible and have slightly higher out of pocket maximums, but he is able to see his therapists regularly, and we never have to budget out the visits.

The plan has decent coverage of ABA therapy. We’re some of the lucky ones–I know some plans won’t cover it at all. ABA has been successful in helping Tate learn skills that he otherwise wouldn’t have learned. He has benefited from the one-on-one setting, at our home. He has breezed through several programs. He is mastering programs that we were weary about him being able to handle. He is moving mountains every day.

Getting ABA covered wasn’t easy. They made us jump through numerous hoops. I was on the phone several hours. Hubz was emailing and talking to HR representatives. At first we were denied coverage because the autism diagnosis hadn’t cleared. Then we were denied because the doctor didn’t write specific hours as a prescription. Then, it was denied because the plan stated therapy could only be delivered by a BCBA…not a behavior specialist (someone studying for their BCBA). Hubz got them to change the plan to include behavior specialists, because the reality is that BCBA’s are completely outnumbered. Then he was denied because it was a full moon. (I jest…I jest..) But, he was denied a few extra times…or the therapist was denied a few times due to some coding issue. Eventually, after several stressful days, weeks, months, we got Tate paired with an ABA therapy team. SUCCESS!!

However…however….the plan only covers ABA therapy until age 7. AGE SEVEN. Because, apparently, in health-insurance-land, where puppy dogs and rainbows rule, autistic children suddenly no longer have deficits in language, social skills, fine motor, gross motor, visual motor, and play skills once they hit age seven. For those who are counting, Tate turns the magical age of 7 in April 2013. We have 4 months of therapy left. FOUR FREAKING MONTHS. Hubz started emailing and leaving messages for HR reps back in October, at the 6 month mark. We’re trying to start the process for getting an exception. See,when we started out on the ABA journey, the HR rep that Hubz spoke to told him that the plan only covers to age 7, but individual exceptions can be made…and if our son was still progressing and benefiting from ABA, they could make an exception if we filled out the appropriate paperwork, and had his therapists and director of therapy fill out proper paperwork. And, I’m sure, his neuropsychologist. So, we’ve started the hoop jumping…again.

The original HR rep was no longer with the company. He got passed along to someone else…someone who when we started out trying to get ABA covered for Tate, passed Hubz around like a hot potato. This HR rep doesn’t answer emails. Doesn’t answer phone messages. It’s getting pretty ugly. Hubz has followed up twice now…to no avail. He is leaving one more email and one more message, letting the HR rep that the director will be involved ASAP. This is just ridiculous.

We fought too long and too hard to get Tate into ABA therapy. He has come so far…progressed in so many areas…developed skills that we were told were not likely…in just 18 months. Our son is amazing, nothing short of that. Ahhh-may-zing. He works his butt off. He is in therapy several hours a week to learn skills that come naturally to all of his NT peers. Yet, he doesn’t complain. He goes to every session. He fights it, at times, but he gets it done. And in getting it done, Tate has blossomed. He has functional speech. He is starting to play WITH people. He is starting to respond to non-immediate-family statements and questions. He is expressing feelings occasionally. His anxiety has decreased in some areas of his life.

It shouldn’t be this hard…keeping my son in a therapy that is helping him succeed. I am anxious. I am nervous that we’ll be told “no”. I am worried that he’ll regress. I am beside myself with guilt that we didn’t get him diagnosed earlier..and started in ABA at a younger age…But I can’t let that slow me down. I will channel all of the angst, anxiety, frustration and anger to fight with every. freaking. ounce I’ve got to at least say we didn’t go down without a good last stand. My son, my intelligent, witty, fun-loving son deserves no less. We will fight with all we’ve got to get our kid the help he needs, nay, deserves, in order to succeed in life.


Embracing the “Different”

Jake and Tate are anything but typical. Some days that is hard to accept. Other days, it is a treasure that Hubz and I share. It can be rewarding and challenging and heartbreaking and hopeful all at the same time. As we move forward in our adventure of life, and as we gain more traction in this “different” path, I find that I don’t fight the “different” as much as I used to. I’m not saying that I always like it…or that I have stopped wishing (at times) that things were different for my boys…but I have found a peace with the “different.” A perfect example of my peace was an experience shopping this past weekend.

I broke free from the family on Sunday evening in order to take advantage of a pretty good sale at a local toy shop. The shop was having a 25% off the entire store sale…and there were a few items there that I wanted to snag for the boys for Christmas presents. Hubz gladly sent me on my way.

I walked up to the store and steeled myself. It’s small. Toys line the walls, the floor, and every nook and cranny in-between. It is often too warm in there. And dry. With the exceptional sale, it was also quite crowded. (Even with it being the third day of the promotion during the last two business hours, several parents were rushing in to purchase goodies for their little ones.) Oh, what I do for my boys, I thought as I walked into the store. I inhaled deeply..and was assaulted by a scent of piney-peppermint. God only knows what that was coming from in the store.

I scuttled over to the wall of science toys. I was searching for a marble roller coaster.  The 10-year-old in me was giddy with excitement. Look at that circuit board! And that marble roller coaster! And the experiment kits!! Make your own gooey candy! Make your own bouncy ball! Create your own weather! (I’m not sure how that one works, truth be told, but whatever.) I paused in front of the Tin-can robot. I ached to buy it for Jake. However, I knew it would be a waste–too much planning and focus required with that one. Instead, I threw it in my basket for our 10-year-old nephew. Cuz would like it. I picked up some Laser Pegs. The set I chose was a “Mega Bug” set–and could be configured nine different ways. The age on the box says “5+”. They had some set out for “kids” to try. I played with them. They were fun. Tate would like the fact that they light up when connected. Who cares if he never makes the mega bug…or dune buggy…or motorcycle…he’ll have fun watching the pegs light up as he plugs them into one another..they are so colorful.

I finally found the marble roller coaster set, which was my entire reason for making the trip. It said ages 6+ on the box. I looked at it…and my heart sunk. There just was no way that Tate could build that without having a meltdown. It was way too complicated for him. Too complicated for even Jake to build. Hubz and I would have to do the building, and the boys would roll the marble. Tate would rip the legs off to stim. I know him. It would happen at some point. Hubz and I would have to put it back together. Damn. Sigh. But wait…there was a set for 4+ that just might work. I called Hubz. I explained that they had a marble set for 4+…and it was very colorful..and looked like something that could be done without too much help. It was less intricate…less bendy and loopy. Less motor planning and organization would be needed to accomplish this one. I heard the disappointment in Hubz’s voice. It paralleled my own. But…if this was something that the boys could do..on their own…without our help…it would give them a feeling of success. Of accomplishment. So, without any more hesitation, I put away the box for age 6+ and picked up the box for 4+.

I meandered past some puzzles. They were 100 or more pieces. I snickered. Tate is just mastering 24 piece puzzles. Jake can handle bigger ones, but 100+ pieces would be too much for him. Both boys like the finished product, but the mess of several pieces laying scattered on the floor or table demanding to be placed in a proper position would just be too much. Right now, anyway. So I kept walking.

I found myself face-to-face with the “Wall of Legos”. The store had many sets…some of which can be found at Target or Walmart…and others which cannot. Jake had a SpongeBob SquarePants Super Hero set on his list. It’s a small set…something quite easy to assemble. He had been begging for it all weekend. It was perfect. I put it in my basket. I found another set for Tate. One that has a race car, a police car, but most importantly, a stop light. A particular stop light with a gray stick base, and 3 black blocks with the red, yellow and green opaque “button” legos for the lights. Tate loved the prior stoplight we had to death. I had to super glue that thing back together when he bit part of the block apart. Sensory seeking boy of mine…oh yes. I threw that one into my basket as well.

I rounded out the shopping trip with a plush, red, space-themed angry bird. That was also on Jake’s list. It will fit nicely with his budding collection. A bonus of those birds is that all three boys play with them–together. I will buy anything that encourages my children to play together. I got into line. The very long line. I texted Hubz to let him know I was in line, but that it would be a while. He assured me that there were no worries. So I stood patiently. The store’s owner came around with water bottles. I gladly partook of one, as I felt my throat closing from the dry, recycled air in there.

As I waited in line, the woman in front of me made some small talk. (Apparently we were the only two people shopping that night who did not bring a friend or spouse.) She asked if she could see what I had in my basket. Ever the people pleaser, I allowed her to check out the goodies. She asked about the Laser Pegs. I told her that I thought they’d be fun…and that my son would love them because they lit up…and that I didn’t expect him to necessarily follow the directions..and that’s ok. She looked a little puzzled..and then blurted out, “you know, that’s the right kind of spirit. If it makes them happy, who cares, right?” I fervently shook my head “yes”. (She actually bought one for each of her children when she got to the front of the line…guess I persuaded her.)

My line-buddy then took a look at the marble coaster. She inquired about the recipient. I told her it was for my 6 year old. She raised her eyebrow..but didn’t say a word. She made some small talk about kids and their various interests..and then proceeded to say that at least it wasn’t a DS game. (Hated to break it to her, but he’s getting one of those, too…) In the past I would have probably been embarrassed…or a little ashamed…or felt I had to explain the why behind the slightly below age-level toy/game/etc. But that day in the store?? I just smiled and said that I knew my son would absolutely love spinning the marble through the tubes and down the slides…and that his happiness would be contagious.

In that moment, I realized I had embraced the “different” in my kids. They are who they are…”different” and all. They love me, including my quirks and oddities (of which I have, ohhhh, a few), and I love them, too. Hubz and I may not be building “master” level Lego sets with our boys…yet. And that’s ok. We may avoid complex games with several steps and pieces…and that’s ok, too. We may buy things that are designed for children younger than our sons, but we know that the toys and games that we are buying will bring our kids happiness and joy…and embracing that?! That is what parenting is all about.


Falling apart, coming together

Yesterday was not one of our best days at the House of Hope. I woke up with my list of things to do running through my head. I was hoping that Tate’s ABA director would get back to me about his IEP meeting (which was scheduled for this morning). I was, indeed, frazzled. I checked my email on my phone at breakfast. She had finally emailed me. She wasn’t going to call into the meeting, but wanted to see the draft of the IEP so she could comment. I had asked a few other times if she wanted to see it. She never got back to me. I got wrapped up in getting the hard copy that I had scanned and then sent to her office. The computer flashed the blue screen of death at me mid-scan, so I had to start all over. All 24 pages. Cole was getting into mischief and mayhem (per usual). I was doing laundry because Tate had uncharacteristically wet the bed. Yeah..it wasn’t a good day.

I ran to Kohl’s to pick up some pants for Tate. The only pants I can get him to wear are from their Jumping Beans line. The other day, for the first time ever, he told me he liked those pants best because “they are soft, Mommy.” He patted them with his hands for extra measure. Hallelujah for communication!! Knowing that he likes these pants, I could go buy more and he’d actually not fight me in the morning!! Luckily he’s still small enough to fit into the “little boys” wear. I grabbed a few different colors, got Cole a fire truck shirt, and we checked out.

Once in the car, I looked down at my phone. I had it on silent. I had a message and an appointment icon staring back at me. Ohnoholycrap! I had totally, utterly forgotten about a room parent meeting I had set up for 9 am. CRAP! I sent out a quick message to apologize, and ask when other availability would be. While I beat myself up about it, I listened to the voice mail. It was Jake’s teacher. She wanted to tell me about something that had happened that morning. She asked that I call and page her so she could explain. Pit.in.bottom.of.stomach.

I called the school. I was trembling. She got on the phone and we discussed the “new” routine for Jake. See, he loves, loves, loves animals. LOVES. Some may say he’s obsessed. The science unit that they are covering right now is all about animals, habitats, etc. I swear it was written expressly for Jake. In the unit, his teacher is combining the science and reading curriculum. Typically, he would go to his resource teacher for reading, but because this is motivating for him, we had worked out a plan where he’d spend 30 minutes with his classroom doing science/reading and then the other 30 minutes with his resource teacher, to work on the fundamentals of reading, so that she could help him with comprehension and fluency. Yesterday was the second day of this unit, and Jake fell apart. Completely.

He curled himself into a ball. He kept repeating that he couldn’t do the work. His teacher persevered. She said he loves animals. Maybe just look at the pictures and tell her what he thought. He said he couldn’t look. He started to squeak. She said that he could work with his partner. He scrunched his face and buried it in his hands. This went on for 25 minutes. His teacher gently encouraging (while also trying to teach the rest of the class), Jake melting down. It became time for him to go to his resource room. It took him 10 minutes to get there. He’d sob, stop, baby-step…sob, stop, baby-step. His teacher called the social worker.

When he got to resource, he sat in a ball. She offered him a drink of water. He grunted. She offered a snack, he went to get it, and then started to slam cabinets. The change in routine had completely thrown him into oblivion. His brain, as he said, “was going crazy”. He wasn’t sure how to handle this change. The social worker arrived. She asked him if he wanted to go to her office. He nodded. They talked about change and how it’s hard on the way to her office. Once there, she talked to him about breathing strategies. About going to the bathroom to take a break when school seemed like too much. About how to tell his teacher when it’s “too much”. She wanted to shift his focus from being overwhelmed. She took him to the book fair. They looked at books. He kept going back to a Pokemon book. She bought it for him. He calmed down. He returned to class. His resource teacher got him to read more of the science text. When he transitioned into his regular classroom again, his teacher got him to write sentences. He was calm and focused. He was ok.

I thanked his teacher, and then sent emails to the resource teacher and his social worker, thanking them for their kindness and help during the day. I offered to reimburse the social worker for the book. She said not to worry…she had some coupons. I was reeling a bit from the news that our son, the one who just a week ago we sat around a table and discussed how fantastically he has handled third grade so far, was struggling so greatly. It was the change in routine. We know that. The social stories that the social worker used helped him. They were reinforced by his resource and regular ed teacher later in the day. I talked about it at home. He was able to talk about it, and he let us know he didn’t like how he acted, and that he was sorry. We all assured him that it is ok to get frustrated, but to work through it…to tell us how he’s feeling, so that we can help him.

He is so fortunate to have such a terrific team.  When he is falling apart, we come together to support him and help him pick up the pieces. Everyone is working together to help him succeed. He sees that. He knows it. He wrote a thank you letter today for his social worker. He knows that she went above and beyond for him. He appreciates that. He hugged his teacher and thanked her for her help. He high-fived his resource teacher. He hugged me and thanked me for being proud of him.

He’s figuring it out…and he’s got all of us there for him during the process.

It’s Not Fair

Chances are, if you have a child in elementary school, you’ve heard this refrain more than you’d like to admit. Currently, it’s in the Top 10 Phrases Used at the Hope Household. Jake uses it. Often. Appropriately. Annoyingly. Tate has used it once or twice.

After the week we had, I want to use it, too. Now, as a full-fledged adult, I am well aware that life is not fair. Doesn’t mean I don’t want to grumble about it now and then…

On Wednesday, Jake had lacrosse practice and then had to work his bakesale. The bakesale was held during his school’s open house. I pulled him from practice early so that he could work. We arrived to mass chaos at the bakesale/book fair/open house. (Now you know why Jake and I were the only 2 from our family to go.)

Hubz had to miss out on Jake’s excitement. His pride in showing off his work in his classroom. His mad skills at the bakesale. (A future salesman, perhaps.) His happiness as he participated with his peers and friends in a very typical right of passage. It’s not fair!

On Thursday, it was Tate’s turn for Open House. Jake had practice, so Hubz stayed at the park with Cole, while I took Tate to his school. He was all out of sorts.
I-I-I need Ms. J to take me to school on the bus. No school, Mommy. I explained, again, that we were going to say hi to his teacher and see his artwork, and then we’d go home.
Noooo. I don’t think so. I stay here, Mommy. (Here was the car. I tried to explain that the rules say he can’t stay in the car by himself. Luckily, since rules are the end-all-be-all,he came with me.)

We walked into the school. His ears turned bright red. We walked down the hall towards his classroom, and he tried to elope. I persuaded him to come with me. We got to his classroom and he planted his feet firmly on the ground. He would not budge. I started to deflate. He couldn’t handle this. Still. Sigh.

We agreed that he’d sit by his locker while I went into the classroom. His teacher talked about how much he has improved, showed me his journals, and we talked about his prowess with the iPad. He’s teaching his teacher and aides how to use it! She went to check on him while I looked at his artwork and listened (as my heart broke into several pieces) to the other students proudly showing their parents all of their masterpieces. It’s not fair!

Other children can tolerate the out-of-routine visit to the school. But not my son. It was painful for him to be there. At night. School is closed at night, Mommy. It is…but it isn’t always. Next time maybe a social story will help. Maybe it won’t. Just stinks that Tate was too disregulated to enjoy it. (Once we were in the car, he was a different kid…proudly showing me his letters, numbers, and words in his journals.)

Last night was Friday. Jake’s school was hosting Springo-Bingo…a family bingo night/fundraiser. It’s loud. It’s hot. It’s overcrowded. It’s at school–at night. Needless to say, we didn’t go. I did offer to take Jake, but he decided to stay home and watch a movie with his brothers. It’s not fair! I wish we could participate as a family. We. Just. Can’t.

To top it off, Tate had a major meltdown last night. He wanted to vacuum, but I was on the phone. Then he insisted upon garbage on the fan. Ugh. For months, now, Tate has asked us for garbage on the fan. We. Have. NO. IDEA. What. That. Means. None. Zip. Zero. I went through my usual attempts to guess. I was stumped. My sister, C, had stopped by, too. That change in routine was also too much.

The Leap Frog letters on the fridge whizzed past me. Tate was shouting. Crying. Pleading. Garbage on the fan?! No, Mommy, no! Here comes an “M”. Then an “A”. Then a “T”. Seriously. Then random letters came and pelted me in the back. I was trying to ignore it…per our ABA team. My sister was getting anxious. I was ready to cry.

That’s enough! I took Tate into the living room. We sat in the oversized chair. I hugged him. Squeezed him. Whispered softly in his ear. The anxiety plummeted. He relaxed. He melted into me. He whispered. Please, I watch Umizoomi? Yes…and so, he went into the family room and watched his show.

It’s not fair….even a simple visit from my sister is not simple.

Today, Saturday, it is raining. Cold. Feels like early March. We are inside. Tate is enjoying himself. He’s playing with the tablet…watching Imagination Movers and Playdoh commercials. He’s playing–a little–with Cole. They are content. So, well, this seems fair. I’m going to enjoy it.

Why Does He Do That?

I know that Tate, who appears outwardly typical in appearance, just, well, isn’t. His brain works in mysterious ways.

When our Tater Tot is excited, he flaps and volume control goes out the window. When he’s anxious, he paces, he flaps, he pulls his underwear waistband, he emits some odd sounds…a mix between a hum and a pained cry. So, yeah, not “typical”.

We walk the fine line that so many who live with Autism do…the one between encouraging more socially acceptable behaviors and allowing your child/brother/nephew/grandson just be himself.

Our family knows that this is Tate. It’s who he is, and how he reacts. We all, 2.5 y.o. Cole included, know how to talk Tate down from his anxiety. We all know which stims work best when…and we are starting to decode his scripts…even Jake, who has language issues himself, knows that Tate’s scripts mean something.

I have been preparing myself for the inevitable. The questions from kids in the neighborhood, at church, at the store, at the park….why does he do THAT? However, last night, as my boys frolicked in the Summer-ness outside, I felt blindsided.

We were outside with two neighbor families. The one family has a daughter Jake’s age, and 2 sons, each a year behind my two younger boys. The other family has a 3 y.o. daughter and infant son. The kids had been chasing each other through the yards and the cul-de-sac out front. They were all having so much fun. And Tate? He was keeping up, having fun and, loving being in the thick of things.

Somehow we ended up in our neighbor’s back yard. They have a small playset (since it’s only their 3 y.o. who plays out there currently), which has one toddler swing and a regular swing. The older neighbor girl, the one Jake’s age, began to swing on it. Cole was in the toddler swing.

Tate ran toward us. He made a beeline for the regular swing. He started to flap. I could see the anxiety catch up with him. Between the 7 kids roaming around, and Tate’s desire to swing on the unavailable swing, his inability to cope became obvious. He lost his words, and the emotions took over. He flapped. He paced. He made that noise.

Me: It’s ok, Tater. You can have a turn soon. She’ll let you swing when she’s done.
Tate: hruuuahhhuuuh. I’m fine. Huuurrmm. Huuurrmm. (Flap, flap, flap)
Me: Settle down, sweetie. It’s ok. (I reached out and gave a deep pressure hug.)
Tate: I’m fine (his script) (Flap, flap, flap)
A: Mrs. Hope, why does he do that?
Me: The flapping?
A: Yes. Why?
Me: (hoping the panic didn’t show on my face) Well, A, Tate reacts to anxiety differently than we do. Like, when we get excited, or really, really want something, but aren’t sure we’ll get it and we just wring our hands or think things quietly in our heads, well, Tate shows that feeling with his hands and feet. We might feel that way, but we do it inside, where Tate puts it out there.
A: Ohhhhh…
Me: It’s not bad or anything…just a different way of handling his emotions.
A: Yeah, I guess. (Gets off the swing.) Hey, bud, you can use this now.
Me: Thanks, A.
A: Sure. He really wants it more than I do….

Aaaannndddd, exhale. I am very lucky that one of my first explanations was to a girl who is (1) very mature for her age, and (2) fairly understanding of younger kids. I am sure she had more questions for her mom later, but she was content with my explanation for the time being…

Now to refine my explanation for future questions, looks, and judgements…

By the way, while we discuss Autism in our house, we really haven’t said much to other kids. Tate has never asked, and if I tell him, I don’t know how much sinks in. Jake asked once, but then he was like, oh, that’s Tater.

Our friends know, but never ask if we want to talk to their kids about it…and I never know if I should bust into a lesson about neuro-diversity.

Sometimes this parenting gig is hard!

Report Cards

No one should have to cry after reading her son’s report card. #specialneeds #autism #ADHD
– my tweet on Saturday morning

Our boys brought home their report cards on Friday. Along with report cards, we get our trimester progress reports on IEP’s. It’s such a thrilling painful time when these come home.

Tate’s report card was good. He’s handling the workload well, and he is progressing through the differentiated curriculum at the right pace. He seems to be on track for several of his IEP goals, and when I was a little surprised about his not having started on a few, I reached out to his specialists. (Waiting to hear back…)

Jake’s report card made me cry. He’s a “joy to have in class”. He is “trying really hard”. He is “working at his potential”. But. Always a “but”. He is struggling….he is making progress towards several of the objectives that 2nd graders are taught, but he is behind most of his peers. He is talking out in class. He is unable to work independently. Sighhhhh.

Jake’s latest scores in reading bought him some more support. I was notified on Friday that the team thinks it is in his best interest to do the reading intervention with the resource teacher. So, they pulled him out of lab and small group, and he’ll do that work with her,where she can tailor it more specifically to his needs. (At least they told me before they implemented it this time…and sent home an addendum to his IEP.)

I realize that his IEP was implemented in January…but little has been started, so there is little progress to report. Boo! And my fantasies of Jake mastering his IEP goals with panache and speed are shattered, as reality presents itslef in black and white.

I ache when I think of how my boys struggle every day in school. It shouldn’t be this hard…should it?? Some of it is sensory, some of it is attention, and some of it is processing. So many hurdles to overcome…

Today, I am disappointed with myself for being so upset over these reports. They aren’t horrid, just not great, either. And we all want greatness for our kids, do we not.

What’s the problem?

Being a card-carrying member of the “Parents of Kids with Autism” club, I know what the textbook definition is of neurotypical. I know that my second born child is not neurotypical. My third born definitely is neurotypical. Our first born?? Not quite sure…is there a middle/kinda-sorta NT??

Jake is a great kid. Hubz and I are so lucky. From the beginning, aside from not sleeping through the night until 6 months, Jake was so easy. He listened. Sure, he tested boundaries, but after one or two reminders, he did what we expected. He was slightly delayed with some motor skills, mostly gross motor, and had speech/language delays, but wasn’t that far behind peers. He had friends, and was happy.

The year and a half prior to kindergarten he was evaluated by the district, and he qualified for 60 minutes of speech therapy a week. He enjoyed the games and seemed to be making some progress.

Once he started kindergarten he struggled with pre-reading and math. He had trouble answering questions about stories. He didn’t want to read much. He began to fall behind. He wouldn’t play with the boys in his class much, preferring to play with the girls, or sit alone and look at books. I was so preoccupied with Tate and Cole, who was an infant, that I wonder if I missed something important….

First grade proved to be more of the same…except that he started a reading-intervention program, and things began to click with words, spelling, and reading. He was re-evaluated, and also qualified for OT to help with his endurance and ability to cope with frustration. He showed some sensory-avoiding behaviors. We began to ask about ADHD…he could be so easily distracted and became inattentive. Again, I got wrapped up in all things Tate…and didn’t strongly pursue action for Jake.

When second grade started, I was on the phone with his teacher 10 days into the school year. It took until the first week of October to get a domain meeting. I got rating scales to complete in early November.  At parent-teacher conferences we talked about what a great kid he is, and his teacher told us how much his peers enjoy him. Our meeting with the IEP team is January 9th. I am on pins and needles. What is going on with my beautiful boy?

As we get closer, I get more nervous…more anxious. We have already gotten one Autism diagnosis…is another one on the way? Is it merely a learning disability coupled with ADHD? I know he’s immature. I know he is low-average. The waiting is so hard. Numerous scenarios fly through my head. Luckily I am busy enough that I don’t have time to dwell on it all the time…but when it creeps in, I get that all-too-familiar pit in my stomach. My “gut” is telling me something. I want to run…I want to scream…but I don’t. I will wait. I will listen and ask questions. I will get my son help.

I hate the days in limbo. They are lonely and isolating. They cause fear and guilt and uneasiness. I just want to know….

Here We Go…Again

In the 8 years of parenthood that Hubz and I have under our belts, we have come to realize that our “gut” is a good predictor..and gives us our best judgements. God’s gift to us is that “gut feeling”. It can save us…or riddle us with guilt when we don’t pay attention. At times we have tried to will away the “gut” feeling…only to be smacked upside the head with the reality that, no, our “gut” was right.

When Jake was 15 months, I began to ask the pediatrician if Jake’s speech was an issue. He was hard to understand…and had limited words…but he did understand what we were saying. The doc said it was fine…but my “gut” thought maybe not. Sure enough, a couple years later his daycare teacher suggested speech screening and he qualified for speech services through the school district.

Take Tate and his developmental delays. We started to feel that nervousness in our “gut” when he was about 15 months old. Something wasn’t quite right. He was a little different than his peers. Too clingy. Too fussy. Too removed. At 18 months, the delays were more prominent. No consistent words. Easily upset. Unable to understand basic commands.

In December 2007, the director of daycare called me…at work. There were “concerns”. Urgent? No…not really. About Tate? Well, yes, but with Jake, too. She wanted both parents there. We planned on meeting on a Friday morning. I hung up. Stunned. Hurt. My kids? BOTH of them? We were definitely concerned about Tate…but Jake?! Really??

That meeting was the first time we heard the term Autism thrown around with Tate’s name. No!!! Tate couldn’t be Autistic. Bile swirled up…I swallowed it down. He made eye-contact. He interacted with people. He didn’t always shy away from touch…ah, but while I tried to reason it away, my “gut” had been suspecting it.

Jake, we were told, was not always able to follow directions. He had difficulty with some gross motor..and fine motor skills. His speech/language was causing some communication issues. He was highly dependent upon the teacher. And he was stubborn. Jake could do things…on his time. If he didn’t want to do it, he wouldn’t. To us, it felt like she was saying that Jake was a brat. Ugh.

That daycare meeting prompted me to contact Early Intervention. Tate qualified for speech. He didn’t do much at the eval…and much was based on the parent interview…in which Hubz and I weren’t very honest with ourselves..or our “gut”. A few months later, he was reevaluated, and they determined OT and Developmental therapy were needed.

We got so wrapped up in Tate and Tate’s struggles that Jake just kind of muddled along. Upon turning 3, Tate moved from EI to the Early Childhood preschool program in the school district. He had pervasive develpmental delay…and in the school district, because he was so young, he was eligible for services due to Develpmental Delay. In the evaluations, no one ever mentioned Autism…and we never asked. Tate’s teachers, who were all special education specialists, flagged Tate’s behaviors. I was called, a few different times, and told that his issues seemed to be “neurological”. NOW I know they meant AUTISM.

Jake fumbled through kindergarten…and the last month we were brought up to speed on HIS areas of concern. My “gut” started to churn..but I pushed it aside. Surely I would not have TWO kids with significant issues… He did summer school. I got mired down with my mom’s terminal cancer to spend too much time worrying about some math and reading struggles.

First grade began, and Jake was visibly more immature than his peers. He continued to struggle. My “gut” was saying that something wasn’t right…His eligibility for special services was up, so they reevaluated him. His speech/language deficits were more severe. He was in a LOW range for expressive and receptive speech. His pragmatic speech lagged. He needed reading intervention. And OT. He struggled greatly with math.

Toward the end of first grade I voiced my concerns with Jake and ADHD. His teacher brought him before the team of specialists because of his math, attention issues, and dependence on her for so much. At some point the school psychologist observed him. I got the psychologist’s notes for my file, but they didn’t say anything. He qualified for summer school, again. My “gut” was still uneasy

In early September I called Jake’s secondgrade teacher. She and I discussed where he was at in regards to school and peers. They had already met as a team. A domain meeting was scheduled for October 4. At the meeting we all agreed that SOMETHING more was going on than just speech/language delay. They were going to do a more comprehensive evaluation. I was reassured by the school psychologist that they didn’t think it was what we are dealing with in terms of Tate.

Hubz and I are convinced that another diagnosis is coming our way. Our “gut”is telling us that there is something there…we hope it is ADHD…maybe a learning disability…I really don’t know what I’ll do if it’s something on the spectrum. I am trying not to go there…but Jake does have some quirks…and, well, it runs in families…and is more prevalent in boys…

Today, today I find myself closer to the hard place….feeling scared and a bit overwhelmed. We just filled out several rating scales. It’s so hard to be upbeat and optimistic when you fill out paperwork and can see your child’s areas of weakness laid out before you…in black and white.

And my “gut” is uneasy again….

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