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Give Up

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Photo credit: imelda

This has been the year from heck, educationally speaking.

Thank God for our Assistant Principal. Not only is he adopted himself, he also has an incredible ability to empathize with trauma kids and understand kids with special needs.

If only the IEP team members were all so gifted.

Several times this year, I requested meetings to discuss our boy’s classroom behavior (which is unconventional but explainable when one takes the time to see through his eyes). His Autism Spectrum Disorder has begun to shine through with amazing beauty—or a vengeance, depending upon your perspective.

I requested a one-to-one behavioral aide, which he’s had in the past but never with this particular school. The aide gave him an extra layer of self-control by monitoring the situation for triggers, then reminding him to focus.

We’re lining up for lunch. Other children will be close to you and may touch you. This is okay. You’re perfectly safe.

or

Sitting quietly during testing is important. You’ll need to focus. No chirping, squeaking or other noises. I’ll give you a check mark for every minute you are silent.

This didn’t always work and we went through several aides before finding the right fit, but by the end of first grade we were able to phase out the aide. In fifth, he regressed. We weren’t at physical-aggression-because-I’m-angry level anymore, but his self-management went out the window by the end of September.

There is much to be said for personality match when pairing a teacher with a special needs child. We had stellar matches for him in third and fourth grade; I credit his teachers for the incredible leaps he made both in social and educational arenas.

The fifth grade teacher is a GREAT teacher. Neurotypical kids probably adore her.

But she’s not a personality match for my son, and he’s not a match for her. No one is at fault; it’s just the way things are.

Part of the struggle, I believe, is a simple lack of exposure. Maybe she’s never had a Spectrum kid in her classroom.

Thanks to trial and error, the fourth grade teacher found that putting him in a desk by himself—in the corner with fewest articles on the walls—helped him focus. He began participating more fully in spite of the separation she perceived as potentially problematic.

I suggested (and the school psychologist agreed) that the fifth grade teacher should do the same. Until then, she’d kept her classroom desks in groups of four or five. One of the daily points of contention happened when another child touched his things (inevitable at close range, because his desk tended to overflow). The teacher disagreed with the tactic but said she would comply with the group consensus.

Arriving in the classroom to drop off supplies about a week later, I found that she had placed his desk alone, as asked, but IN THE MIDDLE OF THE ROOM, allowing for three-hundred-sixty degrees of incoming stimulation. Anyone with experience would never consider the middle of the room a viable spot for a kid with ASD.

Our boy is focused on the end result. Consequential forethought is rare; he almost never thinks about how his choices may affect others.

For instance: a friend told him that when he stamps his foot, his shoes light up. He neglected to provide a demonstration. Our guy thought about those lights all day. His impulse control held fast until about thirty minutes prior to pickup. He couldn’t take it anymore. The light-up-shoes called his name.

He ran up and stamped the kid’s foot.

The teacher wrote me a note, stating he had “viciously kicked” another child. Write-up, suspension.

He came home with a packet of papers to complete. He sat in a chair all day and worked (and got almost everything correct).

For this kid, suspension = joy.

He can learn and do his work with no distractions.

About two weeks later, our girl was home sick. Boy wanted to stay home as well. No fever, so off he went.

I sent a note to the teacher and left a message for the assistant principal, letting them know he may be out of sorts or pretend to be ill because he really wanted to be at home.

Thirty minutes into the school day, he pulled a chair out from under another child. He truly didn’t think about whether the child would be hurt (thankfully not); he just figured that if stamping a kid’s foot sent him home, this should also do the trick.

After a phone conference with the Assistant Principal, we agreed on after-school suspension for several days, to prevent a rash of must-find-a-way-to-get-suspended behaviors.

Again, I called a meeting, explaining (for the millionth-ish time) my request for a one-to-one behavioral aide. An aide could help him process the situation. Could see—as I often must—the potential issues and prevent a problem.

For instance, the behavioral aide would have noted he left his desk and immediately required him to sit back down. He would have never made it halfway across the room in the first place, much less had the opportunity to pull out the kid’s chair.

The aide could walk him to-and-from class, preventing the spark of hallway chaos from lighting his trigger fuse. Might recognize hyper-stimulation and ameliorate his angst before it ballooned into behaviors.

The IEP team, in spite of my pleas, turned down my request because

he’s not failing.

In fact, he’s doing quite well.

He’s “unable to focus,” he “refuses to participate” and “doesn’t follow along with the class,” yet his grades are above average.

And because we must keep him in the “least restrictive environment” for his needs, this precludes the need for a behavioral aide.

When they announced the reason, I stared in shock.

You’re telling me that he constantly distracts the class, he’s not able to focus or self-manage, he doesn’t know the material, he can’t get along with others and he’s a problem that must be solved, but you won’t allow me to procure a one-to-one aide because his grades are too good.

Yes, that’s exactly what they were saying.

And so,

I Give Up.

Not on my kid, and not on his education.

And I’m sure as heck not telling him this:

I give up stressing about his classroom behavior.

 

Sometimes, the only thing left to do is give it up.

Because

you have to let go of what’s in your hands before you can pick up anything else.

And because sometimes,

moving on to the next thing is more important. 

I’m Going In…Part 2

I didn’t get what I wanted last week.

(Click on the “last week” link to go back to Part 1.)

I marched into the meeting armed with a thick file of psychological testing, neurological testing, notes I’ve taken through the last five years and a box of thirty-odd adoptive parenting books. I wanted to show the team we’ve done due diligence and our homework. Our daughter’s in-home therapist accompanied me.

A few days prior to the meeting, one of the lead therapists in the assessment company spent several hours on the phone learning about our situation. I’m sure she’s also thinking of the financial gain of a new client but she seemed very dedicated to helping our girl get what she needs. She even offered to join the meeting by phone. However, the night before the meeting she called to let me know the community services rep told her not to call. I thought it was a little strange; using every resource seemed like a good move to me, but I figured this wasn’t the rep’s first rodeo. She must have her reasons.

As the meeting started, I explained our situation, laid out the path we’ve taken to try to find answers and explained why we feel having an assessment (which is a large expense) would be helpful for our daughter. Several companies nationwide in the U.S. provide the service; some appear to have better results than others and many are very far away. This company is our closest option and has received great feedback from former clients.

The meeting facilitator asked for additional information about the company. I began handing out the company brochures as the community service rep spoke up. “Unfortunately, no one from the company was available to join us for this meeting, so we don’t have additional information.”

Wait, what?!

Mid-reach over the big oak table with a brochure, I locked eyes with the rep.

“Actually, she was available. She called me last night stating that you told her not to call in.”

The rep flushed, then said, “Well. Yes. I did. I have to say, the behavior discussed here is nothing like the sweet young lady who sat in my office.”

For half an hour. She saw my daughter for thirty minutes. She thought I was making this up?

The facilitator’s eyes flicked back and forth between us, possibly concerned I’d jump across the table.

I gritted my teeth and

sat down on my inner WWF wrestler* alter-ego,

who really wanted to pound the rep.

*Her name is Tai-Chi-Mama and she wears a cape. 

Our girl’s therapist told the group she’s familiar with the program and thinks this partnership would be very helpful. Unfortunately, she was a young newcomer and many of the team members were…seasoned. Although they were mildly interested, her words held no sway with the group.

Another team member spoke up just then, explaining that she’s seen excellent results from the assessment with some of her own young clients. I’m not sure why she didn’t say anything earlier; maybe she was waiting to see if I needed help. Her testimony turned the tide from good-luck-getting-that-approved to we’re interested but not sold. 

I still didn’t get what I wanted.

The facilitator told me I’d need to go back to our adoption district and request the funding in a process that can take up to two months (color me not thrilled) by going through the social work team (double not thrilled).

When we adopted, the head social worker in the original district was horrible and the director wasn’t much better. If you’ve been reading a while, you’ve probably seen a few of those painful posts. Telling me I’d need to work with them again was tantamount to directing me to attempt firewalking.

I left the meeting somewhat discouraged. Thankfully, the meeting facilitator offered to call ahead to the social worker. Since the request came from the team, the social worker couldn’t completely shut me down.

Let’s stop here for a quick sing-along: 
You can’t always get what you want
You can’t always get what you want
You can’t always get what you want
But if you try sometimes well you might find
You get what you need

Today, I got what I needed.

The social worker called. She said,

We’ve had trouble building trust with a lot of our older families because of what happened in the past with other social workers. I want to let you know that things are very different now. I’m here to help you and I want to get your daughter what she needs. I’ve sent you information about the process and some paperwork to get it started. Oh, and let me tell you about a few other resources that may be helpful…

Several of the options she suggested weren’t even on my radar. And to think, if we’d been approved in the beginning, I would have never talked with her.

Sometimes, we think we aren’t getting what we want.

Maybe we aren’t.

And maybe, just maybe, not getting what we want is…good.

Diagnosis Redemption

Climb High

Climb High Photo Credit: Casey Alexander

 

When our children came to live with us, we learned about despair. Loss. Grief.

Theirs, not ours.

Our son, then five, woke up screaming between 3 and 4 am. Every morning.

I dragged my laptop (and myself) into his room each time, sending email and running searches. As long as I sat in the room—near the bed but not touching him—with lights on, he slept. Or appeared to sleep; if I left my assigned location, he screamed again.

We couldn’t touch him.

The rare exception was during the screaming fits, when he clung to me like an underfed, sleep-deprived monkey.

He never looked anyone directly in the eye.

He scooted himself underneath any cave-like spot. At our church, they learned to leave him there until he came out on his own. A children’s church volunteer sported a nasty shin-bruise after getting too close.

His first reaction when feeling threatened: lash out, duck under or climb high.

Boy, could that kid climb. High and fast. Still can, actually.

No bad people can get you if you’re thirty feet up a tree. 

He couldn’t wear any clothing with texture. Soft cotton, no tags. Couldn’t eat mashed potatoes without gagging. Anything soft or mushy? No way.

I told the social worker about my concerns. Could this be Autism?

If you’ve read many of my earlier posts, you probably know…our SW was a real gem. (Yes, that’s sarcasm.) She suggested that if we couldn’t handle the children’s issues, social services would kindly remove them from our care.

Threats of removal were, in fact, her only response to my requests that our situation be evaluated for additional training and support as a Therapeutic Foster Home.

At five, he knew only a few letters of the alphabet and exhibited delays in speech and gross motor skills. I contacted the local Children’s hospital about therapy. Ah, the waiting list.

He was so afraid of the other children in his Kindergarten class. Unfortunately, when threatened, his stunted social ability limited him to only a few options: fists, feet and head.

Finally, after six months of driving to the school almost every day to sit in his classroom (the Principal allowed me to stay, considering our situation), the SW approved psychological testing.

This concession came only after multiple attacks on other children in his class and several foiled attempts to escape the school caused the principal to recommend he attend only half-days.

The doctor spent about 45 minutes with him and pronounced his diagnosis as ADHD.

I listed the issues we’d seen in the last six months. “Do you think he could be on the spectrum?”

Nope.

Just traumatized. He’ll be fine in a few months. 

Finally, spots opened up in speech and occupational therapy. The therapists agreed with me. ADHD might be part of the problem, but wasn’t the whole story.

A few months before the adoption finalized (and over a year after they came to live with us), I received their full history.

He spoke about ten words when he was three years old. Most of his communication was nonverbal. His behavior was out of control. No one could work with him. 

For the next four years, every moment became therapy. We worked on speech, motor skills, interacting with others.

During the school year, they attended our local elementary school (with an IEP). He spent part of his day in the Special Education program. In summer, I homeschooled the two of them, reviewing previous learning and adding more skills. We took time for play and breaks, but most days they spent at least an hour on math and reading.

Beginning second grade, he read on a Kindergarten level. He won a book during our library’s reading program, The Family Secret. I knew the reading level was far beyond him, but the graphic novel nature of the book fascinated him. He became obsessed with the World Wars.

At my aunt and uncle’s house, he discovered war documentaries, mostly in black and white. His obsession expanded to include almost any war. In the bookstore, he begged for coffee-table size books about conflicts in Vietnam and Korea.

And his reading ability exploded. Now in 4th grade, his reading level borders between 5th and 6th grade. He draws elaborate representations of planes, ships and tanks. His attention to detail is unbelievable.

He hears music in his head and recently discovered Beethoven. He’s asking for piano lessons this summer, specifically so he can learn to play the 5th. My mom gave us a set of classical CDs; he vacillates between Tchaikovsky,  Schubert and Bach during the day. At bedtime, it has to be Beethoven. And if someone is rude enough to talk during the first movement, we get a rewound encore.

But his social skills are still far behind what they should be. He doesn’t “get” why certain things are inappropriate. He still can’t choke down certain foods or wear irritating clothing.

Once again, I asked his counselor.

Could he be on the Autism Spectrum?

And this counselor, too, who sees him once every two weeks for forty minutes, said, “I think he’s just OCD. And maybe a little eccentric.”

Right. Because “eccentric” is a word we use for nine year old boys. 

Finally, I talked him into psych testing. I am not a professional, but I live with the kid. If he’s not ASD, I’m crazy. (Which is likely still the case…)

After the first part, I met with the counselor.

He appeared a bit gobsmacked.

I don’t want to jump the gun, but it appears he could possibly be on the spectrum, based on preliminary testing.

No, really?

A second round, including feedback from his teachers. I asked him to call me with the results.

His secretary called instead; I think he’s mad at me. She was hesitant.

So, his tests show that your son has ADHD.

I almost laughed out loud in frustration.

And he has Autism. 

THANK. GOD.

Finally, a diagnosis.

I AM THRILLED.

Now, some of you may question my sanity. Several of my friends have ASD kids and aren’t very happy about the problems ASD brings.

However, for the last several years, I’ve been working more or less alone (as far as therapists and counselors), coaxing therapists into doing things that help kids with Autism even though “he’s not Autistic.”

Finding ways to help him learn.

Explaining to people that he “needs a little extra” when it comes to understanding others—especially other children.

PLEASE: Don’t corner him. Don’t force him. Don’t scare him. Don’t misunderstand him.

Last summer, he went to a basketball day camp and spent most of the week on the bench (I found out after the fact; he wasn’t forthcoming because he thought he’d be in trouble for acting out). They didn’t give him space to calm himself when he was agitated, which meant he ended up acting crazy.

They saw his ramped-up reactions as misbehavior, when he was just scared and overstimulated. Not their fault either; they’re not trained for special needs. But if we’d had a diagnosis, it might have changed their perception of his actions.

This summer, with the diagnosis, he qualifies to attend a camp for kids on the spectrum, with counselors trained to help him have the most fun possible. If he needs a minute, he can have a minute. No benching. SO. COOL.

And yes, I feel a little bit “told ya so.” I want to call that (no longer working) social worker and give her a piece of my mind.

Sure, lady, he’s just fine. He needs no special accommodations. It’s all in my head. I’m just being hypervigilant. 

And when it comes to my kids, I’ll be hypervigilant to my dying day.

Because after the start they had, they need all the help they can get.

And Hubby and I plan to make that happen.

We can’t wait to see how high he climbs.

 

 

This Weekend’s All About YOU!

I need your Blog.

Or someone else’s. I’m not picky.

Hubby (aka “Mr. Incredible”) has once again promised me a couple solid days of reading and writing. (I think he saw my eye start to tic.) So, I’m off to my happy place and I’m looking for great blog recommendations.

It could be anything (seriously, I’ll read ANYthing…well, except vampire sex scenes or 50 Shades fan fiction…heave…), but especially if you’ve come across a really funny (or hey, not funny) adoption or special needs post in your recent jaunts through blogland, I’d love to check it out.

Please also feel free to promote your blog here. Tell us why you’re AWESOME. Blogging is all about connecting, right? Maybe someone will think, “wow, my new BBF*!” as they read your comment.

*Blog Buddy Forever

Your turn. Annnnnnnnnd…GO.

Adoption = Hanging in There

Today, Hubby and I have been married for 14 years.

We’ve survived deaths of grandparents, friends and a parent

We’ve celebrated births of nieces, nephews and friends’ children

We’ve learned that sometimes the best things in life AREN’T free (but free is super)

We’ve persevered through an almost-divorce (so glad we stuck it out)

We’ve endured two years of HellonEarth and almost two more years of the ups and downs of special needs

We’ve adventured in the mountains and in the sand, in the snow and in the heat, with two happy kids

We’ve experienced some really spectacular star gazing

We’ve enjoyed many snuggled-up conversations in our cozy porch swing

And

We’ve done all of it together

 

 

Fooling around with colors and fonts, per Blogging 101 assignment. Emotions were not assigned.

Adoption= Anxiety Attack

For many moms, the First Day of School is a welcome relief. For moms of special needs kids (adopted or not), the First Day provides relief, but is also a little scary..and is a lot more cause for nail-biting.

I was truly happy to spend time with my kiddos for the last three months, swimming, playing and summer-home-schooling (we focused on math and language arts and they read more than 40 books). I will be just as elated to send them on their way to our really excellent public elementary school on Tuesday.

I’ll also be a nervous wreck. Here’s why:

Three years ago:

The girl frequently Duck-and-Covered under her desk like a child of the 1950s nuclear scare, cried in a corner of the playground and intentionally created a rats-nest-of-insanity on her head by  scrubbing her hands through her hair until she looked like Johnny Depp’s Edward Scissorhands.  The school counselor was very concerned.

The boy escaped school three times, had no fear of his teacher or the in-school behavioral aide sent by social services, and decked another child twice his size–he punched her right in the face. (The teacher, behavioral aide AND her father later told me she was the class bully and deserved it, but still…) The school counselor wasn’t the only one who was very concerned.

Two years ago:

The girl gave up the possibility of nuclear attack and sported a cute new boy-short haircut that was insanely difficult to muss. She did much better behaviorally, but I re-taught her everything in the evenings, as she didn’t absorb  information well at school. If not for the social concerns, we probably would have considered homeschooling.

The boy screamed at his teacher, poured glue on his desk, rolled around in the floor and generally disrupted the class. Again, he escaped the school several times. He scared away three behavioral aides who were (apparently) trained professionals. If not for a very understanding principal, we probably would have considered military school.

Last year:

We held the girl back, and it was just what she needed; she did great in school. Oh, and she fabricated a story (looking for attention from her teacher) that resulted in a Social Services surprise visit to our home…but that’s a story for another post. Thankfully, one of the social workers was very familiar with our situation and our girl’s attachment issues.

The boy made what he calls “A-One-Hundred” when he was focused, and failing grades when he wasn’t. Behaviorally, he had mostly minor problems and slight altercations with other kids, but we were still in the principal’s office a couple times a month and had several notes home per week. Thankfully, we had teachers who cared very much about his success. While they didn’t overlook his behavioral issues, they worked with us to help him grow socially and academically.

This year:

We met both their teachers today. I sent them back into the boy’s classroom for a few minutes while I spoke with the girl’s teacher. He popped back into the doorway to ask, “May I please ask Mrs. L if I can read some of her books?”  The other teacher was impressed. So was I. Impressed and hopeful. Cautiously optimistic.

Oh please oh please oh please oh please… Please let this year be better. Please, please, please let it be the year they find that they love school–or at least that they love learning.

The year they make friends, real friends. The year they find peace. The year they gain confidence. The year they are happy.

And maybe, just maybe, the year I can grow out my nails.

Adoption = Advocacy (Chapter 3: How to Open a Can of Whoop-***)

“You have to consider the source,” opined our social worker. “I mean, the parents didn’t finish school, and obviously their IQs were not…great…so, you really can’t expect much out of these kids. If they graduate high school, you should be celebrating. They will probably never make Cs, much less As and Bs. Lower your expectations and everyone will be happier.”

Our less-than-stellar social worker made this statement when I voiced my concerns about our foster kids’ lack of academic progress. Yes, REALLY.

It’s a prime example of why we should have had a liaison. Unfortunately, we didn’t know enough to ask for one.

Learn from our mistake…even if DSS says, “Sure, you can work directly with us,” find someone to fight for you and the child. You don’t have to go through the expense of an agency–there are non-profits and even court-appointed guardians willing to help. Google “liaison for foster families” and you’ll get “About 368,000 results (0.32 seconds).

If you’re hard-headed (or naive) like me and plan to be your own advocate, prepare yourself for battling burned out/soon-retiring social workers, having sleepless nights and finding steel-gray hairs multiplying on your noggin like rabbits on Cialis.

(I must note here, not all DSS workers are awful. After 1.5 years, a new social worker took over our file. I’m pretty sure she was an angel. I’m also sure that if we’d had her from the beginning, our 2-year adoption process would have taken closer to 6 months, but that’s another story.)

For MONTHS, I petitioned (read: nagged) DSS. The kids needed extra help, for the following reasons:

1. The background paperwork noted that when he was 3 years of age, our 5 year old foster son utilized only ten words; all other communication was non-verbal. Although he’d made progress in two years, his vocabulary was still very limited. He screamed a lot.

2. Our foster daughter, 7, could barely read three-letter words and could not do simple math.

3. Our foster son, 5, could not read ANYTHING and did not even know the entire alphabet. I tried the “let’s think of a word for each letter” approach and found that he did, in fact, know multiple curse words for each of the letters A, B, D, F and G.

4. Both kiddos were failing (Kindergarten and First Grade) across the board. The girl was unable to do the work or focus; the boy’s behavior and inability to focus prevented any learning.

We felt these were legitimate concerns. Our social worker was not inclined to agree.

Something had to change, and it wasn’t our opinion that every kid should have a chance to excel.

At that point, I was clueless. No idea what services were available. Who to ask. Where to look. Google became my best friend. Here’s what I learned from GTE (Google, Trial & Error).

If your adopted or foster child is having trouble in school, he or she probably needs an IEP, or Individualized Education Program, as soon as possible.

Do not pass go, do not collect stipend dollars–march your frazzle directly to the school office and ask what the IEP process is. (It usually takes at least a month to get the ball rolling. You can give that ball a bounce by having a psych/educational evaluation done by an outside professional. Ask your pediatrician to recommend a child psychologist.)

After multiple DSS absences during IEP meetings, the frustrated school principal began faxing paperwork to the social worker. I pestered the mess out of DSS until they faxed the papers back. Both children were approved for IEP and began receiving extra help in reading and math. Results were not immediate, but we began to see steady changes. 2.5 years later, we see HUGE improvement in both academic and behavioral areas.

Don’t be afraid to advocate for your child. Even if you haven’t adopted them yet (and even if that’s not in the plan), YOU are still the one adult who can make a difference. The social worker does not see the child in day-to-day activity. She’s not directly involved in homework frustrations. Not getting “the look” from a very concerned teacher. Not dealing with the irate bus driver. Not driving to school, yet again, because your foster daughter punched some kid in the face.

YOU are the one saving this kid from disaster. Put on your grownup panties (or boxers) and DO IT.

To recap:

  1. Get a liaison.
  2. Don’t let DSS bully you. Feel free to bully DSS. In some cases, it’s the only way to get what your child needs.
  3. GET AN IEP. GET AN IEP. GET AN IEP. Foster kids are under-served by the system and their school careers are interrupted, usually many times. Very few won’t need an IEP.
  4. Be proactive. Don’t wait for the teacher’s concerned note. If your child is having problems academically or behaviorally, get help. Now.
  5. Bring out Mama (or Papa) Bear. No need to be afraid. Everyone should have the child’s best interest in mind. If they don’t, REMIND THEM.

Also, never let anyone talk you into lowering your expectations (unless you expect them to make A+ on everything…in which case, you just need to stop smoking the proverbial crack).

Foster kids fully receive and believe the message that they are “LESS”…less capable, less wanted, less intelligent, less loved. Expect their best from them and show them how to attain personal success. Be careful not to inadvertently communicate that you expect perfection. Keep in mind, improvement = success.

And if your social worker suggests that low IQ is hereditary, perhaps it would be okay to ask about their parents’ intelligence quotient.

“Wow. If parental IQ determines the child’s ability and intelligence, then your parents must have been REALLY stupid.”

That’s what I should have said.

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