Why My Daughter Learning To Walk Was So Incredible

I hate running.  I didn’t mind it so much when I played soccer and I forgot I was technically running, but I really despise it when there is nothing to do but run. I try to listen to music but I inevitably find myself stopping on the side of the road, choreographing, and singing to show tunes instead of increasing my heart rate. I should see someone for my unresolved Broadway dreams. I tried in college. It was a good way to counteract all the Wisconsin cheese bread I was eating. My roommate would take me for a spin.

“Just to the mailbox, Leah. You can do it,” she would cheer, her red hair flying in front of me. “You can do it.”

“I mean, we could… or we could stop at the Union and get some ice cream first?”

Running really wasn’t my calling. Which is why it was so surprising one afternoon when I said to my husband randomly, “I will be right back, I need to to go outside.” I threw on a pair of sneakers and temporarily gave myself a time-out from adulting. I just started walking down the street. I resembled an Edward Scissorhands-like figure bumbling down the center of the road, arms extended, no phone, no keys, no sports bra. And because my brain thinks in stories, I found myself Forrest Gump style, suddenly running. I wasn’t tired. I wasn’t bored. I was outside — by myself.

When I clocked it later, I ran more than two miles. And there was a hill. Yes, I was impressed too. I tried to recreate it later that week, but realized the first time was simply an aberration as I just looked at the hill, turned around, and walked home belting “Climb Every Mountain.”

When I returned home, I tried to identify just what it was I was running from. And there it sat — the walker. The fire-engine red, metal contraption I had picked up a month ago to help my daughter learn to walk. She had just received a rare diagnosis of cri-du-chat syndrome, a disorder that is found in 1 in 50,000 births. We aren’t sure if she will ever walk or talk.

At first, I was excited about bringing it home; this would be the tool to help prove the geneticist wrong. The knee height orthotics were beginning to allow her to pull up, but Jordan’s body could not seem to handle its own weight to maintain walking. This contraption was the great solution. However, each time she saw it, she would cry hysterically. I knew I was supposed to push her, but I also knew we both preferred our kitchen dance parties. My husband was much better at working with Jordan; I focused my attention on reorganizing her therapy schedule. I would watch the neighborhood children, half her age, run through the backyard while I measured the distance of our kitchen to see if it could accommodate a wheelchair.

This milestone was far too painful for me. I was not the only one who was frustrated. Our fearless therapists were pulling out all the stops to get her to try. Was her hypotonia not allowing her body to hold her weight because she has so much low tone? Did she cognitively comprehend the motor planning required to take a step? Was her constant wailing during physical therapy a result of fatigue, pain, or frustration? Jordan spent hours with her team, supporting her with hula hoops, banging on drums, and supporting her body with weighted tools.

Courtesy of Leah Moore

On one particularly difficult afternoon, our family trainer came to visit with her dog, Fozzie. The team was interested in trying a new technique and recognized Jordan’s fascination with Fozzie. She was drawn to his fluffy fur and thought he was utterly delightful. It helped that Fozzie was trained and knew exactly what girls like Jordan needed: motivation. The desire to pet Fozzie was enough to get Jordan moving.

Jordan taking her first supported steps will always be for me what An Affair To Remember is for my mother: it doesn’t matter what I am doing, I will always tear up when I think about that day when my two-and-a-half-year-old daughter, who wasn’t supposed to walk, started walking.

A few weeks later, I found myself in a quiet moment.

“I will be right back, I need to to go outside,” I called to my husband.

I strolled down the sidewalk. My thoughts were inundated with pride for my daughter. She checked off the first box on her “won’t be able to do” list. I started to pick up my pace.

If my daughter can learn to walk, I surely can make it to the mailbox.

Courtesy of Leah Moore

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As A Parent Of A Chronically Ill Child, I Wish People Would Stop Saying This

There have been so many situations in my life where, on reflection, I wish I had said something else; or, with hindsight, I realized that what I thought was an empathic comment actually missed the mark. Because the truth is, unless you’ve been in a situation, and lived it, it’s so tough to be able to imagine the reality of it.

As Oprah Winfrey said, “The struggle of my life created empathy – I could relate.” Experience equips us. Conversations with others having those experiences also help: hearing what has helped to them during a difficult time, or – as is sometimes the case – the very opposite.

Don’t get me wrong… sometimes the corkers people come out with are what gives the light relief in a moment of darkness: “They said WHAT?!! You. Are. Joking!”

But, despite the good intentions, if you’re in a vulnerable place, a poorly-judged comment can also nudge you a little further down a dark slope, and unfortunately the person’s original intent isn’t going to be visible to you when you’re in the shadow.

I’ve been on a pretty slippy parenting path since my twins (one of whom has a life-threatening incurable medical condition) arrived nearly 5 years ago. And I have to say, I’ve heard some absolute crackers in that time! So I thought I’d take my personal experience, looking from the inside out of this particular bubble, and compile a short list of some of the gems that have been said to me, that I would advise you to avoid.

1. “But he doesn’t look sick?”

Ummm, he is…? I would love for ALL the doctors and tests to be wrong, but they’re not, and I don’t even know how to reply to this question: “Erm, I’m not making it up…?” My energy is way too low for this kind of unconstructive conversation.

2. “They might grow out of it.”

Are you a renowned specialist in this exact area? I get that you’re trying to be hopeful, but, again, this conversation – with me trying to convince you I’m not naïve to listen to health professionals – is only going to mentally and emotionally exhaust me.

3. “Did you not breastfeed him?”

Just … no. Don’t do this.

4. “At least you have him for a while.”

This has been said to me TWICE. Two people thought that saying this to me would be a positive thing to say. PLEASE don’t flippantly mention the possibility of a chronically ill child’s death, a thought the parent will already be haunted – plagued – by.

5. Please don’t bring up God.

Honestly, I don’t want to be told how he moves in mysterious ways, and only gives challenges to those strong enough to deal with them, and on and on. This will make me feel all the rage. Parents of kids with additional needs are strong because they weren’t given a choice; my child isn’t going through trauma because I have good coping mechanisms that the universe wanted to test.

6. “Oh, my [healthy kid] is just like that too.”

This is a sensitive one: I know you’re trying to relate, and connect, and share your own load, and that you’re probably in a tough place too, because this parenting gig is hard. But, if I’m talking about something my kid’s having to go through that is genuinely extreme, so extreme that it could only be something a chronically ill child would have to suffer through, this just makes me feel that their struggle – and mine – is so off your radar it’s not even on it. I feel so utterly invisible in these moments.

And as for what to do, rather than not do: If you’re hanging with your friend who, on top of all the bonkers stuff that goes with parenting, has another mammoth child-related layer on top, please listen. You don’t have to question, or try to think of something to make her feel better, or have a response, or insightful wisdom — just be the ears your friend desperately needs. Simply letting her know you’re there if she needs you, and that you see her, is worth more than you can ever imagine.

 

We are Scary Mommies, millions of unique women, united by motherhood. We are scary, and we are proud. But Scary Mommies are more than “just” mothers; we are partners (and ex-partners,) daughters, sisters, friends… and we need a space to talk about things other than the kids. So check out our Scary Mommy It’s Personal Facebook page. And if your kids are out of diapers and daycare, our Scary Mommy Tweens & Teens Facebook page is here to help parents survive the tween and teen years (aka, the scariest of them all).

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Being A Parent Is Hard — Being A Special Needs Parent Is Harder

Being a parent is hard. Being a special needs parent is harder.

Comparing the two is like comparing apples to oranges. Or monster trucks to Mini Coopers. While they are both “in the same vein” they are really not that much alike when you step back and look at them.

While you worry about which kindergarten teacher your son will have, I have to worry about what kind of classroom my son will have to go in to best meet his needs and abilities.

While you get excited to get your daughter off the school bus every afternoon, I have to make sure there is an aide on the bus so my son doesn’t get bullied and knows when to get off.

While you are busy asking your kid how their day went, I am celebrating the fact that my son can finally tell me how his day went after 6 years of speech therapy.

While you are able to give both of your kids equal attention, my neurotypical child tends to get the short end of the stick because my other child needs more of our attention and has exhausted us.

While you get to make spur of the moment play dates to the local park, I have to have notice of that plan so I can prepare my son and me to go — snacks, talk to him about it before, and an excuse to leave if things don’t work out.

While you enjoy a date night with your husband while the neighborhood high schooler watches your kids, I can only rely on a few trusted caregivers to watch mine because not just anyone can deal with any behaviors that might come up while we are out.

While both of your children get to do typical kid stuff this summer (laugh, swim, go on vacation), I have to worry about if we’ll get to go further than an hour away or be able to swim in a pool without the added safety worries.

While you are attending town soccer practices and boy or girl scout meetings with your child, I am attending IEP meetings and sitting in on yet another evaluation that could change the course of my child’s life.

While you get to talk to other moms about the new local hair salon or place to eat dinner, I have to explain to the rest of the group why my son is walking the perimeter of the playground instead of playing on the climbing apparatus.

While you have to teach your child to be kind, compassionate and to stand up for others, I have to teach my child all of those things and also how to defend himself from bullies that 8 out of 10 times will target him over other kids because of his special needs.

While you get to casually shop at Target and talk to the sweet elderly woman that waves at your son in the cart, I have to explain to her that my son has autism and that he is having a meltdown because the store didn’t have his favorite snack I told him we were going to buy.

While you are out having dinner with your best friend, I will be at home again because my son had a rough day and I just need to be here instead and my needs always come dead last.

While you cry at night sometimes because your kid told you he hated you, I cry at night often because I worry about whether or not I’m doing enough to help my son live his best life.

While you are bragging about the new milestone that you child has hit, I have to explain why my son is almost two years behind in some areas of his development.

While you worry about how much you are going to spend on your daughter’s prom, I have to worry about if my child will ever get asked to go to his.

While you worry about your child getting a good job or going to a good college, I have to worry about if my child will ever be able to hold steady employment or live on his own.

I don’t say these things to make you feel sorry for me or my child. Nor to make it sound like you don’t have hard days as a mother. I am not trying to compare the two or play the “poor me” card. I’m trying to give you insight into what it is like for us special needs parents. We live with these things everyday.

Every. Day.

We will for the rest of our lives. Many of us will see amazing things out of our children in our lifetime, and a great deal of us will learn more compassion and appreciation for these special little people that we were gifted than any other parent on the planet.

But, that doesn’t mean it’s easy. It’s isolating, exhausting, amazing, and inspiring.

My son is my hero. I don’t say that lightly or as some kind of cheesy euphemism. He is my HERO! Nobody has fought as hard as he has to be where he is at, crushed expectations that were placed on him from the time he was born, or opened the hearts of so many people in just the six years he’s been on the planet.

He’s a miniature version of me with boy parts and a special thing called autism. He is doing second grade math and first grade reading while still in kindergarten. He is the best big brother and has brown eyes you can get lost in. He’s my sweetest love. My firstborn little fighter. I love him more than any part of myself and to the sun and back again.

I love him for who he is and for who he is going to be. But, it’s hard. And I’m done trying to explain that to people that will never “get it.”

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How Having A Neurodivergent Child Has Changed My Parenting

My dream of becoming a mom started with baby dolls. I had names picked out and throughout school, I took every child development class I could get my hands on. I read parenting books, babysat neighborhood kids, and even began working on a degree in child development. I was an expert.

In my 20’s, I began to have my children. A few things didn’t go exactly how I planned but it was a smooth road. I breastfed, cloth diapered and made sure they had the recommended tummy time exercise. My oldest daughter was toilet trained at 18 months, we learned our ABC’s, and I applauded as my kids met every goal and milestone on time or earlier. School began and of course they were “A” students with spectacular behavior. I was perfect.

After my divorce, my perfect parenting continued just how I planned until a monkey wrench was thrown into my well oiled machine. I was unexpectedly pregnant. It was a dark time of unemployment, depression and poverty. It was an emotionally draining pregnancy and my planned out life became a mess. We hung on despite it all and a little 5 pound baby boy was born in August. I was scared, but I was a master by this point. I could do this with my eyes closed.

I knew something was wrong at home when his urine was orange, so we immediately went back to the hospital we had just came from. It was discovered that he wasn’t able to suck correctly. We spent a week dealing with a poor performing pancreas and blood sugar checks after every feed but we were able to work around it with special bottles and a state of the art breast pump. It was just a little bump but I could make it work. Pumping did not work however and I was devastated when my son began formula feeding. The changes continued from there and it was just the beginning.

He slowly approached milestones and seemed to have his own set of rules. As he grew from baby to toddler to preschooler, his differences grew. He was the most energetic person I had ever met. He was so energetic that he physically hurt himself from his behavior. He jumped off furniture, knocked books off of shelves and broke countless household items from rough play or pure destruction. As my older children continued to be awarded with Honor Roll and dazzle the crowd, my son failed to reflect my expertise. I didn’t understand. I fell off my parenting high horse and the fall was long, hard and painful. I had gotten it all wrong.

I learned that everything that I had thought to be important was actually irrelevant. My organic breastfeeding days were gone and I had a child that had sensory sensitivities. My concern over vegetables and sugar went out the window as my son resisted eating and would vomit if he didn’t like the flavor. I fed him anything he could tolerate. He was so active that he was physically incapable of sitting down long enough to eat so I resorted to strapping him into his high chair and putting him in front of the TV to eat.

He didn’t play with toys like other children. He smashed through the house like a raging tornado and I was certain would never toilet train. His speech was so distorted that I (his perfect mother) struggled to understand his few words and he was unpredictable around other children and animals. He required constant supervision far more than my other children. Inconsolable meltdowns became normal in our household, both his and mine, and my perfect parenting practices fell apart one after the other.

I was assured by other parents that he was “just a boy” and he would “grow out of it.” But as time went on, more red flags popped up and he continued to struggle to interact well with the world around him. Other children refused to play with him because of his impulsivity and he left a path of exhausted child care providers. He started preschool at 4 and I will never forget the look on his teacher’s face when I picked him up from school on the first day. I decided to take him to a psychiatrist.

The process of testing began as well as therapy and intervention. He began speech at school and his teacher gave him small goals such as sitting on the circle time carpet for 30 seconds. I had always been the parent with the “A” students so I had barely talked to my children’s teachers beyond a conference once a year. Now suddenly, I was talking to a teacher every day.

I had decided years ago that I wouldn’t medicate my children, but after a full school year in preschool with zero progress and a constant 1:1 behavior aide, I knew that we had to do something. We began to explore medication and other treatment options. Our household catered to his needs. We bought a sturdy living room set that could withstand his jumps and he began taking melatonin to help him sleep regularly. I learned to stop taking the lead and instead follow his. I learned to play by his rules.

I learned to stop trying to make him conform and instead, I conformed. The school granted an IEP and he continued working with an aide. I built a strong relationship with his teacher, therapists and psychiatrist. I reached out to local parent support groups and I joined online support groups. I let go and I finally started to learn how to parent the right way.

He is now six and I am learning more each day. He plays with his ears or flaps his hands when he is concentrating and clothing tags are like a cactus. We give transition warnings before any changes are made and he has a full book shelf for his collection of household items. His weighted blanket helps put him to sleep and I am certain that we have watched The Sandlot as a family at least 3,000 times. We are all learning.

Today was an awful morning so I cried on the way to school while his favorite song played on the radio so he couldn’t hear me. His hair hasn’t been brushed in two days and his shirt wasn’t buttoned but today was the first day he buckled his own seat belt. He had ice cream on his face but at least he ate. I’ve grown tired of his favorite song but he smiled when I looked in the rearview mirror. I’m growing.

I never thought I would be the mom to give her child cold hot dogs for breakfast, but here I am. I never thought I would be the mom to not care about academic success, but here I am. I’ve learned what is truly important. I have learned to follow instead of lead. I have learned that it’s not a competition. None of it is. I have learned that my children’s’ success is not the result of my parenting but rather their hard work. I have learned that “success” is different for everyone. I have learned that I really have no idea what I’m doing but I’m just guessing and hoping I made the right choice. I have learned to let go of the reins and to allow my children to grow in their own way, in their own time.

My son is growing more each day. He has a bumpy road ahead of him with different treatment options, accommodations and medical advice. I’m not sure what the future holds for us but I do know that I will be right there with him, on the sidelines, cheering him on as he succeeds in his own race, in his own way. I am so proud of his hard work and determination and I will always be there every step of the way.

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What I Realized When We Received Our Son’s DYRK1A Diagnosis

It’s a day I will never forget, and it seems like just yesterday I got that call.

My day started out like it normally did at 6:30 am, hitting the snooze a handful of times before waking up. I silently walked into the kitchen to make coffee while the boys slept, made breakfast, threw on some gym clothes, and then woke the boys up to get them ready.

A seemingly uneventful morning.

Put the kids in the car and headed to base where our oldest went to VPK, Voluntary Pre-K, from 8:30 am to noon. Usually I went home right after to work out but today I took up an invite to my friend’s house. Which was a decision I am glad I made.

As we were sitting on her black leather couch, sipping coffee, and chatting away while Jaxson played, I got a phone call. It was from an Alabama number so I knew it was our genetics team.

“We got his genetic test results back … we have an answer” she said. I was ecstatic, relieved: we finally had an answer. She then went on to say that the testing revealed that he has what they call DYRK1A Syndrome … wait, what? She continued to say that it was an extremely rare diagnosis, and that they weren’t expecting it to be that at all.

My relief and joy started to fade, and grief began to creep in.

I quickly grabbed a notepad and pen from my friend as she started to describe the features and symptoms of DYRK1A Syndrome. The more I heard the more I feared.

It got to the point that grief completely took over. One might wonder why was I so sad about this diagnosis? I finally got answers! Well, who wishes their child to have a disability? It meant that our child would have many challenges thrown his way as he got older. We were hoping his delays were something he would eventually grow out of as he aged.

We, as parents, want our children to succeed in the world.

I made a follow-up appointment with the genetics team to discuss what they knew, and silently hung up the phone. I am so happy that I took up coffee with my friend that day — that wasn’t a moment to be alone for.

I cried, and I cried.

Went to pick up our oldest from school and made my way back home, where I continued to cry.

I was finally able to get a hold of my husband that evening; he was away for military training at the time. We discussed the results and vowed we would do everything in our power to help our son overcome these obstacles.

To live the best life he could live because his diagnosis doesn’t define him. He can and he will.

Since that day, I’ve met a wonderful new family through our DYRK1A Support group. They are all welcoming and it’s nice to know that there is someone out there who gets it, who truly understands it.

To anyone facing a similar diagnosis, I want to give you some advice: It is okay to have mixed feelings, and most importantly it is okay to seek support.

You are NOT alone.

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Why We Won’t Be Friends

It seems like we should be friends, doesn’t it? We live in the same neighborhood, our kids are the same age, and we even had on the same top last week. It was fun bumping into each other while we were walking our dogs. We share the same views on so many things, and I haven’t laughed that hard in a long time.

You seemed surprised when I bolted after you suggested meeting up for regular walks. I’m sorry if I seemed rude.

It really would be great to go on regular walks with you and for our sons to play together and have fun like you also suggested. You’re smart, compassionate and a great mom. But we won’t be friends, and here’s why: your kid is neurotypical and my kid is not.

I know you’d be angry if you heard that spoken out loud and I would never come right out and say it. You’d think I wasn’t giving you a chance to show that you’re a decent, non-judgmental person. But I already know you are. I see how you encourage your children to help other kids. I know where that anonymous donation to the youth center came from. You’re amazing and it makes me happy to know that people like you still exist.

But we won’t be friends. As great as you are and as much as you’re teaching your son about compassion, he’s still a kid. And as much as I’m trying to help my son navigate the world, he’s still That Kid. There are too many differences that separate our kids, and those same differences make our friendship a no-go.

It’s hard enough for me to understand all of my son’s challenges. It’s almost impossible for someone not living in the special needs world to get it. Intellectually, you’d understand. But the mama in you would not. The second my son would start melting down, every instinct in you would kick in to get your kids as far away as possible. I hear you. It’s scary. But whether you realized it or not, you’d look at me differently the next time you saw me, wondering where this chaos came from and why I can’t fix it. I’m used to these looks from strangers, but I don’t want to see them from a friend.

And on my side, I’d understand intellectually that your son isn’t being rude to my son. He’s just too young to know how to handle the concept of difference with anything but brutal honesty. But I’d still feel sad when your son hurt my son. In my mind I’d know it’s not your fault just as you’d know my son’s actions aren’t mine. But our hearts belong to our children. That hurt would be between us when I saw you next.

Please don’t think I don’t appreciate the gift of friendship. I do, and I count myself lucky to have incredible people in my life. I’ve got my childhood and college besties with decades of shared memories that kids could never unravel. I’ve got my group of special needs mamas, and I tell you with no exaggeration that I don’t know where I’d be without them. Being in the trenches together forges some unbreakable bonds.

In theory, our friendship could be a lovely lesson in differences and a teaching moment for our kids. In reality, it’s too much to expect young children to handle something even adults struggle with. It doesn’t seem right, I know. But I’ve been through this rodeo before and I already know how it plays out. Maybe when our lives aren’t so centered around children, when the kids are older and settled, it could work. But for now, I bid you farewell, my almost-friend.

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This Is Was The Greatest Gift On Our Son’s Journey With Speech Therapy

My son Anders has been in speech therapy since he was 2. Trying to teach a child how to speak is much harder than I ever imagined. I always just took my basic skills for granted, like knowing how to walk or go to the bathroom—props to my mom and dad.

Anders is now in second grade and will be nine in June. He’s bright and studious, but his speech articulation is on a three-year-old level. Picture yourself four-and-a-half feet tall in a 70-pound bod, smart as can be, but when your words come out, nobody can understand them except those closest to you.

This summer, a friend of mine—who had good intentions—hurt my feelings. On a play date, she blurted out: “What are you going to do about Anders?” I was caught off-guard. “What do you mean?” I asked. I thought it could be a number of things … his picky eating, his sometimes impulsive and anti-social behavior. “His speech,” she said. “I can’t understand a single thing he’s saying! You need to exhaust every resource, have him in therapy every day if that’s what it takes!”

Her words stung. My husband and I had tried so many different things. First off, I knew daily therapy wasn’t the answer. Not only is that expensive, but there’s no way Anders—or likely any kid—would be on board with that much therapy. For therapy to work, they must be willing participants. But she was right about one thing: He still couldn’t be understood. Why was it taking so long?

We had already ruled out cognitive issues, but I wanted to determine if there was some other physical reason for his articulation disorder, one that a specialist in the past had missed. In a matter of weeks, we had appointments with the pediatrician, the dentist, the ENT, the audiologist and the allergist. Anders even went to the hospital for a CT Scan to see if his tonsils or adenoids were bearing down on the back of his tongue and impeding speech. I actually wished that were the problem, that one surgery would fix everything. But that wasn’t the case. All those appointments, all those co-pays, and we had no new answers. The only track it seems, is speech therapy, a journey we’ve been on for nearly seven years.

When Anders was 2, I remember entering his class and being amazed by the other kids’ ability to speak and articulate. “Hello Anders’ mom! I am Olivia. I am two, and I just went potty!” At the same age, Anders would say, “I Nah-Nah (Anders) an I wan BabaTruh (and I want firetruck).”

In the state of Alabama at the time, I applied for Early Intervention, a free speech therapy program for kids under three. He qualified, but every time the therapist came to our house for a session, he refused to participate. He was stubborn and combative. So I tried a different therapist, a private one under our insurance. A few times a week I carted Anders and his baby brother, William, to the next county over for the appointment. I remember one session in particular. Anders was sitting in front of the mirror trying yet failing to get out a “k” sound, when William started clucking from his car carrier in the corner, making a perfect sound from the back of his throat.

We moved to Orlando and our county had a free speech program at the public school for kids 3 and up. Sessions were two days a week during the school day, and since I worked 25 miles away, I hired my housekeeper to pick Anders up from daycare and drive him to speech therapy and back. The speech therapist canceled at least one session every week for one reason or another. There was little I could do—she was a veteran teacher and I wasn’t paying for services—so I tried supplementing with a private therapist. Anders didn’t like the new place nor the change to his routine. The therapist, a young professional in her 20s, held up a flash card of a pink pig and asked Anders to name it. He answered sarcastically, “A boo gaffe (blue giraffe).” $80 a session, down the drain.

We moved to Louisiana in time for Anders to start first grade. I called our new health insurance, and the lady at the 1-800 number said in an annoyingly cheerful voice that a speech therapist in our network was located “nearby in Baton Rouge.” I was exasperated. “Nearby in Baton Rouge!? I have to drive 70 minutes through road construction, over the country’s largest swamp, and through gridlock traffic over the Mississippi River! And do you know how long speech therapy sessions are for a child his age? Only 30 minutes!”

We enrolled Anders in a highly rated public school where he could get free speech therapy services. At Woodvale, he has thrived. He loves the routine and structure, and at a public school with such a mix of kids, he doesn’t feel like the odd man out. He’s gained confidence and excels academically, but his speech progress remains slow.

My friend’s comment last summer did encourage me to seek more help for Anders. I check him out of school every week for private speech therapy at a rate of $78 per 40-minute session. Every time I swipe my credit card, I think about the families who cannot afford this. At our school, the speech therapists can only work on articulation, so the private therapist works on strengthening the muscles in his tongue and around his mouth. We are also adding occupational therapy to strengthen his core muscles and his overall posture. If his body feels uncentered and uncoordinated, perhaps it’s harder for him to target the muscles in his mouth, to properly place his teeth and his tongue where they need to be in order to make the right sounds.

Speech has impacted more than Anders’ ability to communicate. While he was born stubborn as a mule with a type-A personality, I believe his extreme desire for control is because he can’t control his speech. He’s a picky eater, and refuses to try new foods. His weak mouth muscles could make him intimidated by certain textures; he’s unsure how foods will feel in his mouth and how his tongue and jaws will maneuver them.

The hardest of all (for me) is that it’s difficult for Anders to make friends. While he’s an introvert and a little socially awkward, when he does want to engage in friendships, his peers can’t understand him. Sometimes my heart breaks for him. When I see the looks other kids give him I want to shout. HE’S NOT STUPID! He has so many funny and interesting things to say. Why can’t you understand him like I can?

But then one day, the greatest gift came to me unexpectedly. It was Halloween and we dropped in on a new friend. The boys ran off to play, and before following them out of the room, their dad turned to me. “You know, I sounded just like Anders and was in speech therapy until 8th grade,” he said. “I turned out all right. You’d never know now, would you?”

His words were crystal clear, a beautiful song of hope.

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6 Practical Tips For IEP Meetings

IEP meetings are important times to bring your child’s team members together to discuss progress and make changes when necessary. They can also be overwhelming, frustrating and stressful. Here are just a few of my tips that help lead to smooth meetings.

1. Document everything, and bring all the documents.

If you don’t already have a place that all documents from the school and independent providers go, get one now. Some people use a binder or folder for this purpose. Personally I scan everything into my computer and store it on Google Drive and then keep the paper copies in an accordion file folder. Whatever system you use, EVERYTHING should go into it and then be brought into the meeting. I have referenced e-mails from private therapist’s school visits in meetings and I was happy they were in my accordion folder (because, honestly, I have a terrible memory).

The other half of this tip is to document everything, and I mean EVERYTHING (sense a theme?). If a conversation can be done via e-mail instead of by phone, I do it by e-mail because I then have a copy to reference. Plus, the minute I get on the phone, my kids all “need” me inevitably. I’m not saying phone conversations don’t have a place, but often things are more clear in e-mail — plus you can go back to it later. I also send a summary e-mail to the administrators/ teachers at the IEP meetings afterwards. It’s just a couple sentence summary of what I thought happened and any action steps for myself or them.

2. Do everything you can ahead of time.

Last spring, the team sent me the draft goals for the next year and I really wanted to add a speech articulation goal. I’m a people pleaser and don’t like to “bother” people so I figured I’d bring it up at a meeting. My husband urged me to e-mail them now. I eventually did and it turned out the team had been considering an articulation goal (and had already done the testing for a baseline) but decided it was too many goals. They went ahead and wrote and sent over the goal.

In the meeting, the speech therapist thanked me for mentioning it ahead of time. She said it was easier to write the goal in her office than at a meeting. This had never really occurred to me but I now try to iron out any known issues before the meeting.

3. Bring someone else with you.

I think it’s always helpful at any major meeting (educational, health, or other) to have a second person. They may see different points or issues at the meeting and will help you remember what happened. Of course, chose your person wisely. Many people choose to bring an educational advocate or a spouse. I bring my mother-in-law. This is obviously not the choice for everyone, but my mother-in-law used to be a special education teacher and administrator, so she is good at making sure a goal is measurable and an accommodation is acceptable.

4. Speak special education language.

It’s important to be able to understand the terminology that will be used in the meeting and in the paperwork. A great place to start is by reviewing this Special Education Dictionary. You don’t need to memorize it but familiarizing yourself with the terms is useful. If there is any terminology I don’t understand, I jot it down and then ask when the person speaking ends.

5. Take care of yourself.

This one seems obvious enough, but I’m a “hot mess mom” so I’m frantically flat ironing my hair and then sneaking out before my twins schmutz my shirt. I have riffled through my car looking for my emergency almonds having forgotten to eat breakfast at pretty much every meeting and then there was the time I forgot to pee. The meeting was at 8:30 so it was a hustle out of the house.  The kids were up at some crazily early hour so I’d been chugging coffee for hours. I did my put on the heels and cute top and sneak out of the house and arrived at the meeting. I’m a compulsively early person so I was early. Really early, because when I get anxious I get earlier. So as I sat in my car digging for almonds I realized I really had to pee. I knew the receptionist at the school was going to give me grief about getting there early because she never lets me in before 8:29 and I really didn’t want to admit to being there at 8:10. The good part about being really early is I actually drove home, peed and drove back.  Moral of the story: eat breakfast, drink a sensible amount of coffee, don’t stress, be overly early — and definitely don’t forget to pee.

6. Know your rights.

You do not have to sign anything at the meeting.  If you’re sure it is correct, then sign it at the meeting but do not feel pressured to. You can take it home, discuss it with your family, ponder it in the shower, and then sign it.  A great resource for any questions about the legal side of the IEP process is WrightLaw and hiring an educational advocate (or attorney) is another option. My husband’s knee jerk reaction whenever the school worries me (they’ve never actually said no to anything) is that he wants to threaten to sue them. Why he has this reaction will need to be a different blog post, but I do not recommend telling a district this. However, it is still very important to know what rights you have just in case you need to use them.

What’s next?

Good luck at your IEP meeting!  Stay calm, don’t sign anything you aren’t comfortable with, and don’t forget to pee beforehand.

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How More Intervention Meant More Freedom For My Son

Sometimes, as paradoxical as it sounds, more intervention means more freedom.

When my son, Charlie, was three, I walked into his special needs preschool one breezy spring afternoon to pick him up after his physical therapy as per usual. Except nothing about this moment was usual. When I rounded the corner to his class, I glimpsed his back, his curling blond hair, his little hands resting on the arms of an impossibly small black wheelchair. I hadn’t known they even made wheelchairs that small. But there it was and there he was. He looked comfortable. He looked happy. His therapist pivoted him towards me and he grinned and my heart lifted.

This, I told myself, was it. This would bring the freedom we’d been hoping for. With wheels of his own, he could navigate the halls and the stations of his classroom: kitchen set, science set, puzzles, books — the world was his for the choosing.

And he did roll. Sort of. He wheeled a few feet when no one was looking. Or, because he preferred using his left hand rather than both, he turned in slow circles…a graceful solo dance. And in this way, the years passed. We waited for the proficiency we were sure was right around the corner. We moved from this trial wheelchair to his own, specially designed for him. We practiced in the driveway and our cul-de-sac. We practiced in our church atrium. We practiced in the corridors of the mall, before the stores open, when the halls felt like empty runways waiting for take-off. Except he never did take off. Not really. He half-heartedly rolled this way and that, but it never became intentional or natural or easy. By the time he was six, he had almost stopped trying altogether, content to be pushed by an adult or a classmate or his siblings.

Except Charlie wasn’t really content and I knew it. He wanted to go places, but had long ago assumed it would have to be under someone else’s power. I refused to make such assumptions. And so, on a similar spring day, with kindergarten looming, I walked into his preschool once more to watch him try out a power chair. It was black and purple and retro chic, as much as a three-hundred-pound motorized wheelchair can be retro chic.

And at first it was like watching the world’s worst game of Pac-Man. He would push the gearshift and steer himself directly into a wall or a corner or, hilariously, a closet. Reverse was tricky and made me wish for the warning beeps installed in buses and garbage trucks.

Stay on the cautious end of optimistic, I told myself. Better not get your hopes us, as you did with the manual chair, in case it doesn’t work out. 

But something was different now. And it wasn’t all in my head. He did progress. And when he took that great leap off the diving board into kindergarten, he did find his own in that purple and black retro chair. He is now confident, to the point of obstinacy, in his ability to get himself where he needs to go. No, he’s not perfect at this driving business quite yet, but he’s getting there under his own power.

I know more medical equipment — more assistive technology, more therapy — can feel like a step back, a reverse on the milestones, when all you want to do is leap forward. But it can also be the leap. You never know when that one thing can create a door for your child where you once only saw a dead end.

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What I Realized When I Observed My Son With Autism At School

Today started out as a regular ol’ Thursday.  Alarm clocks ringing, bowls of cereal spilling, frantically looking for that missing homework paper that we most definitely finished late the night before, and then the silence that ensued as my last school-aged child hopped on the big yellow bus. However, today I had to change out of my jammies a little bit quicker and drop my youngest off at the sitter because our district was celebrating American Education week. Today was the day parents were invited to observe their child’s classroom.

If I’m being honest, I used to dread these days. My son is on the Autism Spectrum and while I love a peek at what goes on in school, seeing him struggle in a different environment is tougher than it is to see him struggle at home. At home, I know everything that goes on (well almost). After all, I am MOM!

Regardless, I would always go, show support, smile and sometimes cry inside. Half the time, I didn’t even know why. Probably, because it’s a million little things I’m crying for and about. Sometimes happy tears, sometimes sad tears. Mostly, what-if tears.

But I’m not reflecting to have a pity party.  I’m reflecting because today I went and I sat in the back of my son’s inclusion classroom. I smiled for 45 solid minutes.  I smiled at how he fit in, and sometimes stood out. I smiled at how he followed directions. And, I smiled when he didn’t, because he forgot to write his name on his paper (rookie mistake). I smiled at how he seems to have friends. I smiled at how he tried not to smile when he saw me walk in, but couldn’t. I smiled at how much his teachers clearly love what they do. And, man do they love what they do!

His teachers rapped about antonyms today and I mean they rapped. Yes, there were a couple of parents in the back observing, but I am certain they were not channeling their inner Biggie Smalls for us. They love my kid and his classmates and that love has sparked a love of learning in my little guy that I used to dream about.

So, in short, nothing amazing happened today. Well, the antonym rapping was pretty amazing! My kid raised his hand and forgot what he was going to say. A typical first-grade mistake from a not-so-typical kid. And that made me happy. I don’t think I’ve set the bar low. I’ve never been okay with mediocracy before, but I think I am now.

If there is anything I’ve learned in the past 7 years from being an autism mom is that average is okay. Heck, it’s wonderful! When we focus so specifically on the spectrum, and where a person may or may not fall, we can lose sight of the bigger picture. We use the word “special” a lot. Special needs, special education, special diet, special plan within the IEP, etc. But I’m done with special.

Today, I choose ordinary. And I’m proud to have gotten to a point in my life where average is not only okay, but pretty damn perfect. Obviously, every day isn’t perfectly average and full of smiles, but I will continue to look forward to ordinary days like today. Perfection is sneaky sometimes, as it can hide in a regular ol’ Thursday.

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