Letting Go of Special Needs Parenting

The 10-year old girl with the top hat and glasses slides up to the podium. Forgetting to adjust the microphone, she leans down and loudly exclaims: “Do you know which president’s real name is Thomas? That’s right, it’s Woodrowwwwwww Wilson!” The comment sounds more like the introduction for a Chicago Bulls basketball player than a 4th grader giving a speech on the 28th president of the United States.

The audience giggles and my friend leans in close to whisper, “She is a riot!”

I smile big and roll my eyes as I watch my daughter yuk it up in front of roughly fifty parents and her classmates, only looking slightly nervous.

Of the thirty students giving speeches this morning, my daughter is the only one to perform it like a stand up comedy routine. She rehearsed her delivery to ensure a few laughs.

I hear the audience chuckle again as she tells them that Wilson accomplished a little more than just being a father to three girls. I know the speech verbatim as we practiced it for two straight weeks. As it often happens when I watch her “perform,” a slew of other phrases pop into my head:

She will most likely have learning problems like dyslexia.”

“We are hopeful that she may live a normal life.”

“You need to prepare yourself for a long road ahead.”

These aren’t phrases out of a carefully written speech; instead they are prognoses from a slew of medical experts about my daughter when we weren’t sure how to help her as a struggling toddler with significant developmental delays.

As she passed the first year mark, I knew something was wrong. She did not possess any words and seemed extremely high-strung and frustrated. She was an early walker at 11 months, but she quickly transitioned to walking only on her toes. I often watched her play with her toys in odd ways and she did not seem interested in other children. The rise of autism was all over the news, and of course I was scanning the Internet trying to figure out what was wrong with my baby.

Doctors could not pinpoint what was actually wrong with my her, and we received a slew of mis-diagnoses: apraxia, dyspraxia, Sensory Processing Disorder, PDD-NOS, Asperger’s. The list was long yet never seemed to fit.

Over the course of the next four years, my daughter participated in a range of therapies, including speech, occupational therapy, physical therapy, social skills classes, developmental therapy and more. We saw progress, but our lead case manager prepared us that she would most likely need an aide when she started kindergarten.

“Whatever it takes,” I responded, but I felt dejected and helpless, like  we were on a hamster wheel running to nowhere.

I sought solace by building friendships with other parents of children with special needs, other people who understood what we were going through on a daily basis. We compared therapists and shared books. We celebrated successes and offered shoulders to cry on when it was a trying day. We discussed how to deal with our “typical” children and our fears of what lay ahead.

What is it like to raise a child with special needs? Sesame Street writer Emily Perl Kingsley, mom to a son with Downs Syndrome, equated it to planning a vacation but the destination gets changed suddenly.

When you’re going to have a baby, it’s like planning a fabulous vacation trip—to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

That is what special needs parenting is like. Except I was fine not going to Italy, but I sure wanted to know where I was! I wanted answers. I needed to know where we were in my daughter’s journey so I did not feel so in the dark.

When she was almost five, we saw an orthopaedic surgeon to assess her legs since therapy was not helping. He told us our daughter had a minor case of cerebral palsy.  In his opinion, although it did not show up on her MRI, she had experienced trauma in the womb that caused a neurological issue forcing her lower leg muscles to not function properly and  interrupting communication with the brain to other regions. This, coupled with some tight tendons, caused her to be a constant, extreme toe walker (think all the way up on your toes, not just the balls of your feet). He also explained that of course her development was delayed. Could you imagine trying to spend your life balanced on your tippy toes and then process information?

While the news was a shock, I was relieved at the same time. The peg finally fit in the hole. CP often causes issues with speech and fine motor skills, but it was non-progressive, which is why we were seeing her developmental skills improve, albeit slowly.

We decided to aggressively pursue treatment for my daughter’s toe walking, which seemed to be a major issue for her both in developing motor skills and her confidence. The doctor would cut her Achilles tendons, elongate them, and then re-attach them in order to allow her to walk on her flat feet without pain. It was bittersweet when the doctor came out to tell us that she had one of the most severe cases he had ever seen, but felt it was successful.

Immediately after the surgery, she began to flourish in leaps and bounds. With a more centered core, it was easier for her to find words and process information for conversation. Her spatial awareness improved. Her sensory needs reduced and she expressed a desire to learn to read. She became more confident and easier to deal with since she could now communicate her wants and needs.

On her first day of kindergarten, she walked through the door on her flat feet and without an aide. Although she was still behind her peer group and required additional support in a few areas, she had surpassed all expectations.

The rush of clapping brings me back to the library, where I see my daughter’s braces-filled smile as she nods to the crowd, acknowledging the applause. My husband and I look at each other, grateful to see her exceed our expectations yet again.

After the last speech, the kids assemble for photos, and my daughter joins three of her friends, arms around each other, smiling for the iPhones snapping pictures at a rapid pace. It is hard to imagine her as a crotchety three-year old that could not even say, “More milk.”

Five years after her surgery, nine years after our first appointment to assess her development, my daughter no longer has what the State would deem “special needs.” She reads at an above average level and excels at math. Our time allocated for additional therapy is now used for horseback lessons and theater class. Kindness and compassion have replaced frustration when I describe her every day attitude.

Yet, sometimes, it is hard to let go of the past, the life I lived as a special needs parent. It’s hard not to worry each time she doesn’t understand a piece of homework or struggles to find the right words. It’s hard not to obsess over any small idiosyncrasy or awkwardness. It’s a struggle to accept that her differences have now become her strengths instead of her handicap.

I know I am one of the lucky ones. It is unusual for a child with severe developmental delays to be so heavily impacted by a surgery or even years of therapies. For most, it is a life-long struggle.

I know we are lucky, and I am grateful for this. And although I wish my daughter’s beginning was less complicated, I am thankful for what I have learned, such as:

Opening up my eyes to the beauty of different.

Understanding that I am my child’s best advocate — and sometimes even highly educated, well-meaning professionals are wrong. Always believe you child can do more than what you are told.

Accepting that it is okay to take help.

Celebrating my daughter’s milestones on her schedule. Little things are always big reasons to celebrate.

Struggling can bring your entire family together, and can impact the kindness and compassion of all your children.

But most importantly, I learned to celebrate my daughter for who she is, and not worry as much about what she has.

My journey with my daughter hasn’t changed. I will still advocate on her behalf and continue to ensure she has all the resources to succeed in this life; however, I am slowly accepting that our path is headed in a different direction. We may be leaving Holland and headed to Italy.

There is a line in my daughter’s speech that she delivered with impeccable precision and compassion: “President Wilson struggled in school in his early years. His teachers thought he may have dyslexia, but he eventually overcame it.”

May similar words be spoken about my daughter one day as well.

Author note: Special needs parenting is hard. In no way do I want to portray that most kids can outgrow their developmental delays or diagnoses. This is only a reflective essay regarding my experience with my daughter. 

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The “Firsts” that Come with the Tween Years

In motherhood, there are so many “firsts” that take your breath away. That first time your baby laughs. The first steps a toddler takes to your outstretched arms. The first time your son takes the school bus or your daughter learns how to ride a bike. When I reflect on these moments my heart feels full.

As our kids grow, the “firsts” come less frequently and the time stretched between them lengthen. Instead of celebrating a new milestone, the goal becomes surviving another Monday shuttling your kids to piano, soccer, the library and Tae Kwan Do while serving something edible for dinner in a Tupperware container that is BPA-free, of course. #winning.

And then, out of nowhere, another first occurs. Except this time it doesn’t involve the potty, or school, or sleeping through the night in her very first big girl bed. Instead, it’s the first time your child rips your heart out, tears it to shreds, stomps all over it, and kicks it to the side for good measure.

We worry about what a child will become

Let me explain.

Last night, I shared with my daughter what I thought would be some great news. She was asked to take a placement test for accelerated math. Exciting, right?

My daughter felt differently. She did not want to take this test, and felt that the class would be too difficult for her. She felt challenged enough, and did not want the additional work. Of course I explained to her that she could do anything she put her mind to, and that we could discuss the options after she took the test, but she would have none of it. I continued my lecture. She held her ground.

That’s when she said it.

“I do not want to talk to YOU about this. I do not want to talk to you EVER,” she said flatly.

Ouch.

I know. I couldn’t believe it either. I was shocked, dumbfounded, stunned. I felt like she just slapped me across the face. I asked her if she was sure if she meant it and she nodded her head in the affirmative.

I then told her very maturely, “Well, that can be arranged.” I rose up from my seat, turned on my heel with my head up high and marched myself right out of the room.

It took me about 17 steps before I could feel the tears well up in my eyes as I started the dinner dishes. This was not the relationship I have worked so hard to maintain with my daughters. This was not supposed to happen to me. Maybe other moms who didn’t work so hard at communication, but not me. I was focused on being open and honest with my girls, I used understanding tones and tried not to yell (a lot), I worked hard at being the compassionate mother who “gets it.” Although I ran my house in a sort of dictator-like fashion, my husband and I always worked hard at listening to our kids and ensuring they felt like their opinions mattered.

But we went off the rails. She just gave me the proverbial middle finger and I did the equivalent of the teenage door slam. It may not have been as dramatic as the “I hate you’s” or other verbal barbs that young girls spear throw at their mothers, but to me, well let’s just say it rattled my cage.

I know what you are thinking. This isn’t that big of a deal, and it really isn’t. But it did mark a major milestone in our house. This was the first time one of my daughters openly challenged me about a life decision. It was the first time that she lashed out in a way that was not a tantrum. It was the first time that she strategically struck me in the jugular — she hit me exactly where she knew it would hurt. And it did.

A few minutes later I called my husband. Knowing that I was exhausted from a busy weekend, I told him what happened in between saying things like, “I know I am just being sensitive” and “I think I’m just tired.” He (thankfully) agreed that while neither of us thought she completely understood what she was saying, we also needed to teach her a lesson. We both feel that it’s important to ensure our children understand that both words and actions matter, so we devised a plan.

It was simple. If she did not want to talk to me, I would simply follow her wishes. I would ignore her until she apologized (without prompting) even if that meant she did not go to bed or to school the next day. She launched the first cannon, but I was going to win the war, or at least this particular battle.

I immediately put my plan into action. I walked right by her as she sat on the couch with her sisters playing Minecraft and ignored her. Although she didn’t even look up, I felt like my attitude spoke volumes. I went up to my room and ignored the heck out of her for approximately 18 minutes.

That’s when I heard my youngest ask for her turn on the iPad, and a few seconds later there was a knock on my door.

“Mom, I’m really sorry I said I didn’t want to talk to you anymore. I didn’t mean it,” my daughter softly said to me.

As I tried to tell her that I only wished she saw all the intelligence and talent and beauty in herself that her teachers and friends and father and I can see, the tears started flowing uncontrollably out of my eyes.

And that’s when another milestone happened. My daughter rushed over to me, threw her arms around my neck, and for the first time, she put MY heart back together.

As we held each other silently for what simultaneously felt like an instant and an eternity, I knew our relationship changed. In one moment, we both saw each other at our worst and then at our best. I was still her mommy — the one who kissed her forehead each night and made sure her blankie was within reach — but I also had to accept she was growing up.

She wanted some power and control over her life, and in her own way, she was asking me to hand it over. And in order to not lose her, in order to keep her close, I had to oblige. “I want you to take the test, but the ultimate decision on whether you participate in the class will be up to you; however, you’ll have to discuss it with Dad and I, and meet the teacher.”

“That sounds fair, Mom. I’m good with that,” she said. And then, as if to remind me that she still needed me, she kissed me on the cheek and skipped out of my room. My heart felt full again.

I am not so naive to believe that this won’t be the first of many “challenges” I have with my tweenage daughter and I know that that the issues ahead of us will grow in size and scope. However, I am hopeful that we both learned a little bit more about each other, and we remember more about putting the pieces back together than tearing them apart.

And I need to get my big girl panties on, because this is going to be one heck of a ride.

Did you enjoy this post or the things you read on Playdates on Fridays? Please make sure you like and share on Facebook and Twitter to make sure no one else misses a playdate! Or feel free to sign up for email notifications of new posts to the right. I never sell or spam, and only post one to two times a week, unless my kids drive me extra crazy, in which I may have a bonus post just to keep my sanity in check. Thanks for visiting.

 

 

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