Guest Post On ASD In My World

When I started my blog I was uncomfortable writing about my life.

It felt so revealing.

I felt so out there.

Most of my life I have spent concealed and to myself.

But I knew I wanted to write and fueled by the adage “write what you know” I put aside my fears and starting sharing my experience parenting a child with Aspergers. Then a funny thing happened, fellow bloggers reached out to me and started commenting on my posts. Oh my, I remember that first “like.” It felt so good! And I started following their blogs and commenting on what they wrote and this incredible online community opened up to me.

It’s satisfying to be part of a group of individuals who open up their lives and their hearts, who reach out to others with offers of support and friendship. That’s the kind of community I like to be a part of. And when Felipa from ASD In My World asked me to do a guest post, to write for her a letter to a mother expecting her second child, I felt like yet another writing goal had come true. I like that.

Please check out my first ever guest post here and Felipa’s blog. We met a week before she delivered her second baby. I am so glad she has continued writing and I am in awe that she does… sleep deprived and all. It took until my baby was 16 before I was rested enough to string a sentence together!

June 30th, The Day My Family Was Complete

There are four years between my kids.

My husband Neal and I joke there were “severe negotiations” going on during that time.

He wanted one child. I wanted two.

I guess you could say I prevailed. But I don’t look at it that way and neither does Neal. In the years since our second child was born we have come to understand more and more why marriage is called a partnership. We work to help each other achieve our goals, our dreams, and together, make the life we have imagined.

Since I can remember I always wanted to be a mother and have two children, a boy and a girl.

I just have and I have been so fortunate the man I have loved for 27 years, who has been my husband for almost 23 of those years was selfless enough to put aside what he thought he wanted and let me have what I wanted. It is my sincerest desire that he can say that I too have done that for him.

The birth of our daughter Meg, just a few minutes after midnight on June 30th, seventeen years ago completed our family and the years spent watching our two children grow has been the most awesome experience of my life. And when Neal says he feels the same way, well, I simply cannot imagine anything more rewarding. I just can’t.

Now let me tell you more of why Neal was, and justifiably, anxious about having a second child.

Our son, Ted, has Aspergers.

Now, I wrote that and it doesn’t sound so bad. Aspergers. Okay. My point?

When I got pregnant we didn’t know Teddy had Aspergers. We just knew something was happening with our child. He was, well, different.

He was challenging.

He was puzzling.

He wore me out.

I even changed my mind about being a stay-at-home mom, and after 32 months home, went back to work.

Why?

Because it was easier.

Working full-time was easier than staying home with Teddy.

There, I said it.

I also believed that I had not done very well as a mother. That conclusion was gut-wrenching because as I said earlier, I always wanted to be a mom and I felt like I had failed and I believed that a preschool, with teachers who knew more than I did about child development, would do a better job.

Yet, despite Teddy’s behavioral challenges and my insecurities, deep inside me, in that place that speaks louder than logic, was the very strong desire for another child.

Kinda crazy, huh?

See why Neal had concerns.

We talked. We talked about everything we were feeling. And as we talked, despite all our worries about Teddy, I still wanted baby #2. And he understood.

So we got pregnant.

By mid-November 1994 we were expecting another child and by January Teddy’s preschool was reporting that he was not adjusting at all. The story I most clearly remember was how daily, after they set up the lunch table, 3-year-old Teddy would find his lunch box, move it to a table in the far corner of the classroom and eat with his back to the class. When asked about this he said,

I just want to eat in peace.

Four months of Teddy being in a university run preschool program taught me I was not crazy and his teachers, three loving, caring women I was fortunate enough to have care for my child, convinced me I was not a terrible mother.

And suddenly the reprieve I got from going back to work was over. We began our journey for a diagnosis.

We spent from February 1995 until the week before the baby was due trying to get a diagnosis. It’s not a fast process. You get a referral, make an appointment, wait weeks for the appointment, go to the appointment, they look at your kid, write down some notes, you schedule a follow-up appointment, wait more weeks and then go back to hear their conclusions. We went through this process twice.

The first psychologist’s conclusion was Teddy had ADHD. I listened. I looked at the report and the treatment suggestions. I said nothing. I then went out and bought books on ADHD and read them. My conclusion, “Close but not there.”

So we started the process over again with Psychologist #2 and his conclusion was “Teddy is really smart and needs to go to Montessori School.” I sat there and smiled at him and on the inside I felt my self-confidence as a mother grow. “What an idiot,” I could hear myself saying.

This was one week before our due date. We packed up and left the guy’s office and gave up on having a diagnosis before the baby.

We switched our attention to the four of us. As soon as the baby was born I was going on maternity leave and Teddy would be back home with me. I was looking forward to not worrying about Teddy. Ironic that I put him in preschool because I worried about him being with me, and after I did, I worried about him not being with me. Welcome to motherhood.

Then, while at work on the afternoon of June 29th I started not feeling right and called Neal to have him pick me up after work. I didn’t want to take the Fraternity Row bus across campus like I normally did to pick up Teddy at the university preschool. At 4:35, five minutes after I got off work, when I would have been on the bus, I was with Neal in the car, driving the same route as the bus, when right in front of the university bookstore, my water broke.

To this day I laugh at the idea of being on the Fraternity Row bus, with a bunch of 19 and 20-year-old college guys and me, this hugely pregnant old lady (I was 30 after all), my feet in a puddle, and how they would have moved away from me so fast and with a “never seen her before in my life” look on all their faces.

It was with a smile fueled by that story that we picked Teddy up at daycare on Thursday, June 29, 1995. The last day of preschool for him as an undiagnosed child with autism. The rest of that day and into the night was an awesome adventure. He has been a good big brother, trying and troublesome at times, but the relationship that my two children have formed is solid and based on a deep love, understanding and appreciation for each other.

My family is complete and it all worked out, as it always does.

A very pregnant Teddy

June 29. Neal kept Teddy busy baking a birthday cake for the baby while I labored.

June 30. 12:17 a.m. Meg was born at a Birthing Center with a midwife. Teddy was there with my mother as his coach. While I delivered Meg I watched as Teddy’s face lit up like a Christmas tree and with a voice full of wonderment, he exclaimed, “IT’S A BAY-BEE”

Teddy and Meg 45 minutes after her birth.

We came home when Meg was 4 hours old. This is Teddy, my mom and his cake the morning of his sister’s birthday.

Teddy enjoying his cake and his sister.

A Notebook And Human Capital Management

Moms keep their children’s stuff.

That’s what we do.

A lot of the stuff we keep looks like this…

Artwork is fun to keep and looks so nice on the refrigerator. We are always, and rightfully so, proud of our kids and what they do. Surrounding ourselves in their wonderfulness is one of the extremely pleasant parts of parenting.

But as the parent of a special needs child there is a lot of other stuff I kept as well and some of it looks like this…

This notebook isn’t nearly as colorful and it didn’t decorate my refrigerator. Instead, it stayed on my desk. But it too speaks of what my child did and more significantly is a reminder of what he overcame. For in this particular notebook the entire record of my son Teddy’s Kindergarten through Third Grade experience is kept.

This notebook is a tool I use as a Human Capital Manager, Special Needs Division.

That’s right.

I am in Human Capital Management.

All mothers are.

And let me tell you, (not that you didn’t already know) HCM is one tough field.

I am responsible, to a large degree, for the outcome of another human being. And when I was assigned to the Special Needs Division, the demands placed on me were increased while the possibility of my child being a self-sufficient adult were decreased.

This is a serious business.

It isn’t for the dilettante or the faint of heart.

And while the duration of most job assignments are measured in weeks or quarters, a HCM’s assignment is measured in decades – multiple decades.

The fallacy of remuneration equaling import is quite apparent. For my role in Human Capital Management, although thought to be an unpaid position (I will get into that in another post) is critical to our economy. Although the contribution goes mostly unrecognized.

Looking strictly at dollars, if I am a successful Human Capital Manager, in the course of my career, I can make an impact that could be worth HUNDREDS OF THOUSANDS OF DOLLARS. For there are two primary outcomes for most children - they can be a tax payer or a tax recipient. If my efforts in the Special Needs Division result in my child successfully overcoming the numerous obstacles before him and he can live independently he will become a tax payer. If this happens, I will have contributed to adding what he could pay in taxes throughout his working life, which, with the rising age of retirement, could be pushing nearly 50 years. Thus my efforts could add substantially to the income column of the government’s spreadsheet rather than adding to the expense column. That’s HUGE.

How is that not valued?

Mothering, HCM, is a vocation that requires unrelenting commitment and in the Special Needs Divisions there are pressures from every direction. I became the artery from which all of my child’s support systems flowed.

I managed doctors, therapists, teachers and school administrators.

I became researcher, scientist, psychologist, teacher, lawyer, secretary, nurse and advocate.

I didn’t read fiction. Instead, on my bedside table was a stack of books about Aspergers, Autism, child behavior, nutrition and sensory integration.

And I constantly thought about what I could be doing to help my son grow up to live his life the way he wanted.

Today I  introduce you to a tool that was invaluable to me. It kept me straight while Teddy was in school and it has helped me write almost every single post about educating Teddy. It is my binder and I recommend to everyone, if they haven’t already, to put one together today. The organization it forced upon me was very valuable in that I always, on a moment’s notice, could put my hands on anything relating to Teddy, his testing, his schooling, whatever. It is a necessary tool in your HCM toolbox.

STEP ONE: When Teddy began Kindergarten I purchased a 3 inch binder, section dividers and a box of paper protectors. Whenever anything came home from school I filed it in this notebook.

These are the sections I made…

STEP TWO: Since IDEA was our playbook, I placed a full copy of the law in the front section. It grounded me. It helped me to remember what I always had on my side. Sadly, I had to refer to this section more times that I wished I had to. But I sure was glad I had it when we needed it. Mothers just a little older than me didn’t have such a law. Click here for a Special Education overview.

STEP THREE: The second section contained Evaluations. I placed copies of every evaluation that had ever been done on Teddy. You know how many there are!

STEP FOUR: Here’s a photo of the Kindergarten section. On the left is the second page of the Social Story I wrote for Teddy just before he started school. You can read it here. On the right is the first page of Teddy’s first IEP.

In addition to IEP’s, I kept teacher’s notes. In this photo you can see the Checklist that came home daily. Multiple page protectors hold those.

STEP FIVE: When a new school year started I made a new section. As first grade grew more difficult, my documentation became more extensive. You can read about the details of first grade here. I can not stress enough how important it is to sit down and record what is happening. It was not fun to list all of Teddy’s infractions but it was the only to address his challenges.

Talk to you kids and then listen to what they tell you. Listening and taking the necessary action sends such a strong message of support . Actions really do speak louder than words.

Every report card and every note home went into the notebook. The hand written note on the right is from Teddy’s third grade EC teacher. You can read the entirety of the letter here.

Remember the first section with the IDEA law? Well, here is the IDEA lawsuit we had to file in February 2000 when Teddy was in 3rd grade. You can read about it here. This notebook, the timelines I made, the notes from the teachers, were given to our attorney and helped bring about a positive settlement that changed forever the course of Teddy’s education.

STEP SIX: Finally, in the front and back pockets I kept miscellaneous notes and reading material. This is a copy of Newsweek’s cover story on Autism dated July 31, 2000.

My only regret, and so I recommend this to you is, if your child is on medication to include a section for that as well. My notes about his medicine are very sketchy. Had I enforced the same standard in that record keeping I would have had a more complete accounting of that eight year history.

While I Couldn’t Write

“We haven’t told the others yet,” my coworker said to me yesterday. “They aren’t going to take it as well as you did.”

“As well as I did…” Her words lingered in the air as I felt my mouth fill with what I wanted to say. And it all was very negative.

“Not yet.” I told myself. “Say nothing.”

I got up to get a glass of water.

But mostly I got up to get away. Continue reading

Ableism And The Pink Plastic Flamingos

 

While running errands, my daughter Meg asked if we could go to Target. On another recent trip there she had seen some pink plastic flamingos in the dollar aisle and wanted to buy one.

“They are perfect for the backyard,” she said, rather liking the tackiness of them. “Besides,” she added, “they represent what mankind so often does… wipe out a species then make their likeness out of plastic.”

She’s 17 going on 37.

So, off to Target and straight to the dollar aisle we went. She found them immediately and her face, fresh and enthusiastic, lit up.

She picked out one of the flamingos, wrapped, appropriately, in plastic, looked it over and put it back.

“That one only has one eye,” she said.

Then she paused. After a moment, she bent back down and picked up the very same plastic flamingo she had just returned to the shelf.

“No. I want this one. I’m not going to discriminate against him because he has one eye. That’s just how he is and I like him. He is just as good as the others and I want to give him a home. That’s ableism.” She proclaimed.

Then she asked, “Can we get two so he’ll have a friend?”

And I looked at my child, my sensitive, thoughtful, sweet child and said,

“Absolutely my dear.”

It was a “just imagine” moment as I stood there looking at Meg and her pink plastic flamingos in the dollar aisle at Target. She has lived her entire life with a brother with Aspergers… she turned five months old on the day he was diagnosed. I would be lying if I didn’t say she has suffered on occasion. She has. She has been on the receiving end of his rages. She’s has had to compromise. She has had to bend. She has had to leap ahead four years and be the older, wiser sibling. She has gone to counseling to help her deal with the complex emotions and stresses such a position creates. Yet she has empathy. She has compassion towards him and others with special needs.

Just imagine a world were people had a similar understanding of the differences amongst us and this knowledge spread a Meg-style love and tolerance. A world were we naturally, instinctively include and provide support for those with differences, rather than avoiding them and putting them back on the shelf.

Just imagine…

Charlotte