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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When Our Parenting Insecurities Get the Best of Us

I was recently on the soccer fields waiting to pick up my daughters when a mom started chatting with me. She asked who my children were, and after I pointed them out she excitedly told me how great my daughters and the other two girls in the group were doing with the larger group of boys. I then of course asked who her son was and as soon as she pointed him out she began to ramble  on about how he wasn’t having a good practice today and they weren’t sure if soccer was his thing and he had a growth spurt recently so he wasn’t as coordinated as the other boys and he wasn’t as fast.  I could barely keep up with all the things she was saying, and I got the distinct impression she thought I had been watching how poorly her son was playing on the soccer field (which is a big laugh since I don’t know much about the game!)

What did I see? A cute kid kicking the ball back and forth with other cute little kids. He looked the same as everyone else.

I thought about that mom again when I took two of my three girls on a bike ride to the park. I ran into a mom I had met previously who has an adorable little girl. I smiled as I watched her chase her brother around the playground squealing his name. I turned to my new friend and asked how old she was. This is the answer I got:

Untitled design-2“She’s almost three but she has a speech delay so that’s probably why you may think she’s younger. We’re working on it but I know she’s hard to understand and I’m concerned with her going to school soon because other kids don’t understand her and I don’t want them to make fun of her although she’s made so much progress and…..” she went on and on.

I finally interrupted her to let her know that she didn’t need to explain anything to me because first, I couldn’t even tell that her daughter had a speech delay; but second, I got it. In fact, at one time I was her.

It’s funny how sometimes you can change the course of your own history in your head, but one small conversation can jolt your memory back to another time. I feel like my persona today is that I am very open about my parenting style and resolute in advocating in the best interest of my children, particularly when it came to raising my twins and the developmental challenges they both faced, one a little more severe than the other. Despite appearing like typical kids now, we have spent hours with physical, speech and occupational therapists to get them to this point. And although my mantra has always been that sharing my story could help someone else, in the beginning — when my daughters were under three — I did the same thing this sweet mom did. I was all about the preemptive strikes with other parents, assuring them that I was aware my kids were not the same as others.

Like when we went to our first two-year old Mommy and me class and my kids were not talking yet, couldn’t sit still, and spent more time gnawing on the books and blocks then interacting with the other kids. I made sure to let the other moms know that my girls were preemies and still catching up, because of course in my mind, all the other kids were behaving exactly as they should.

Or the time a grandmother stopped me in the grocery store and started chatting with my duo and I quickly told her that they had speech delays — because the fact that they were just staring wide-eyed at her face meant she could tell they didn’t have a vast vocabulary yet.

And the time a mom told me how cute it was that my daughter walked on her toes like a ballerina and I blurted out that I had already tested her for autism. That one was really smooth.

Let’s face it and call a spade a spade. I was embarrassed. I was embarrassed and insecure that my kids weren’t like everyone else’s, so I tried to make sure other parents knew that I was aware that my girls were different. Because yes, it was all about me, and although I wasn’t sure if they were judging my kid I certainly didn’t want them to judge me. So not my finest hour, and it is painful to admit this now.

But fortunately I’ve grown a lot since that time, and in fact, I think dealing with my kids’ developmental delays back then really prepared me for when things got more challenging later on with educational issues, team sports or even social interactions. And I recognize it in other parents now — that painful conversation you have with strangers because you are feeling insecure and in some cases, a little embarrassed.

Does this mean we don’t love our kids? Absolutely not. Does this mean we need to get a grip on our own insecurities? Absolutely. But how do we do that?

I had to realize that it is never my kids’ job to make me look good as a parent. It is never my kids’ responsibility to do things on the “typical” developmental schedule. It is not my kids’ duty to be the best at school, at sports, on the playground. The only job my girls have is to become the best people they can be — and my job is to help get them there.

When you let that fear of judgement go — essentially making it not about you — then you can actually start enjoying your child’s activities and their progress, or sometimes even be content at their pure joy in participating in an activity– even when they suck at it.

As the mom of two pretty competitive soccer players, my husband and I have worked hard to tone down our pre-game, during the game, and post-game coaching of our daughters. We took to heart what researchers Bruce Brown and Rob Miller discovered when they asked college athletes what their parents said that made them feel great when they played sports:

College athletes were asked what their parents said that made them feel great, that amplified their joy during and after a ballgame. Their overwhelming response:

“I love to watch you play.”

This also rings true for those of us who know we are not the parents of a future NFL pro or an Olympic athlete, and especially for those of us whose kids struggle at life just a little bit more than others…for those of us whose children’s achievements come in different forms, such as graduating from therapy, making their one basket in a season or learning a new life skill — even if it takes them a little longer than everyone else.

I love to watch you play. No matter what it is. So powerful and so liberating.

When you know your kid may not be the best on the team, instead of saying that you know he isn’t as athletic as the other kids we should just respond with: “That’s my son, and boy does he love to play!” When you meet someone new at the park with your developmentally challenged daughter and they ask how old she is, your first comment should be: “She’s three and I love to watch her whip around the playground!” And when a sweet grandmother comes up to you at the grocery store and starts talking in your daughters’ faces about how cute they are, the only response should be: “I know. Aren’t they delicious?”

Because our kids don’t need to be explained — and we have to stop worrying that we will be judged, even when judgement might be happening. They need to be celebrated. Every single one of them.

And I’m starting with mine.

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We started horseback riding lessons for my daughter to combat a mild case of CP in her lower extremities. Now she is a beautiful rider.

Team Fleming

Team Fleming trying to look tough

 

 

 

Are You Advocating or Annoying?

One of the best pieces of advice I ever received was when my kids were very little: “No one will advocate on behalf of your child like you can. But don’t be a jerk about it.”

Sage words of wisdom.

I kept this in mind a lot as I went through two different state’s special services programs for my daughter ensuring she received the therapies she needed both at home and at school. It was easy to justify my assertiveness, questions and at times, demands.

To really succeed, she needed the right teachers, the right classroom dynamics, and the right therapies. I stayed on top of everything like a hawk and was relentless in ensuring she received the services that were allocated to her. Yes, I was a little obsessive-crazy about it, but I always tried to do it with a smile.

Fortunately, I think most people are extremely understanding when you have extenuating circumstances that apply to your child. But sometimes you just want the best for your kid regardless of what the circumstances are.

Take teachers. We all know that in each grade there are the coveted teachers, and the ones that are just okay. Most schools have a policy against requesting a specific teacher, but you can fill out this little form that allows you to write about your child’s strengths and weaknesses, which is code for trying to match it up to the teacher you want. For example, “I need a teacher who will make my little Mary follow the rules but with a loving, encouraging hand.” This sort of statement would correlate with a teacher who is stern, yet warm and fuzzy.

A good friend of mine — who also happens to be a teacher — disagrees with me on this every year. Her perspective is that the system should work on behalf of your child, and it is good for kids to have all different sorts of teachers. I always say that’s a load of proverbial crap (we really are good friends!).

In this case, the squeaky wheel gets the oil and I have always been over the moon with our teachers. She has felt just so-so about most of them. We’re both comfortable with our choices, but I’m the one that has to walk into school each time wondering if I’m labeled as “that mom”. The annoying mom that is constantly in their faces asking for more with the hope that there is always another parent more annoying than I am.

And while I think you should always advocate for your child when it comes to their education, what happens when it rolls over to other things, such as sports teams, extracurricular activities, or even making friends? When do you step in and when do you let it ride?

We had an interesting experience recently when one of our daughters tried out for a team. We thought she did great, but obviously we know we are biased.  She initially was placed on the second team, which does not play as strong of competition as the first. Our daughter was fine with it, but we had doubts.

After discussing it, and because we are new to this area and organization, we sent an e-mail to the director asking if he could explain the difference between the two teams so we could have a better idea of what her experience would be like the coming year. Honestly, that was all we asked.

Within an hour, she was moved up to the first team (which had an open spot). Can you say awkward? I feel quite certain that most of the parents believed she earned her spot on that team, but I’m also pretty sure some of the parents felt like we got her moved because we cried sour grapes. We’ll probably never know what went on behind the scenes, and now we have to feel confident in the fact that advocating was in her best interest.

I think advocating is definitely in the eyes of the beholder. For example, a few years back the school district we were in was re-districting the elementary schools. A set of parents banned together and caused a ruckus at a few of the school board meetings to ensure that their neighborhood would not be affected. Because all of the elementary schools in our district were quite good, I could not quite understand the distress considering most of the students impacted would be going to school with their neighborhood friends, but the parents were adamant that they remain at their chosen school. And guess what? They won.

Unfortunately, I think too many times as parents we realize that by stepping in and speaking up, you do get the benefit of something better for your son or daughter. But at what cost?

At the end of the day, I do believe the following about advocating for your children:

+ The squeaky wheel gets the oil. Making your opinion and desires known will at the minimum ensure you have a leg to stand on if a situation goes awry, and sometimes you may even get what you asked for.

+ Sometimes even the best [teachers, coaches, therapists, parents] just need to know you’re paying attention. Since I just moved, I tried to give our new teachers some time to get to know my kids. The girls settled in great, but I was disappointed that some issues we had discussed up front weren’t addressed a few months into the burn. After setting up a few meetings and discussing it, I was thrilled to see the changes that were made and how great the teachers responded. I could have remained bitter and disappointed, but instead we’re ending the year extremely satisfied with their progress.

+ Respect is better than threats. I’ve found that when I’m unhappy with a situation, it’s always better to go into a discussion that first identifies where the other person is coming from. No one wants to be bullied, and normally everyone wants to work in the best interest of your child.

Photo by Jon Collier

Photo by Jon Collier

 

+ Be realistic. Advocating is doing what’s in the best interest of your child, not getting your child out of sticky situations. You’re not doing anyone any favors by trying to get your child’s grade changed if they didn’t study for a test or turn in an assignment. And I don’t think it’s in their best interest if they don’t own up to mistakes they may have made.

+ Pick and choose your battles.  There are some things I am relentless about, such as the girls’ education; others, I try to ride it out and realize that maybe I should keep my big mouth shut, which is much more difficult for me than it sounds. When I get myself all riled up about something minor, that’s when I call up a good friend to get some perspective and try desperately to sleep on it.

That being said, in our house we live by the “will I regret this next year knowing I could have changed the outcome if I spoke up” rule. If we think something will truly bother us a year from now, we at least have a discussion about it.

Sometimes no means no.  In the case of my daughter and her try out, we had already decided that she would play on the second team regardless of the director’s response. And recently we decided not to “appeal” a placement decision on behalf of one of our daughter’s based on advice from her teacher, which was extremely disappointing to our kid. Learning to accept rejection is an important life lesson, and although I always want my kid to have the best, it’s also important for them to understand that they don’t always get what they want.

What kind of mom are you? Do you constantly advocate or sit back and see how it will turn out? Are you scared that you are “that annoying mom” or do you believe in speaking up without hesitation? Let me know in the comments below!

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