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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I’m A Blind Mom Raising Blind Kids — Here’s What I’d Like You To Know

Yes, you read the title correctly. I am totally blind due to being born three months premature. My husband is sighted, which means he does all the driving and color identifying, which can be amusing as he is color blind. We are raising two kids, who are both blind and, no, the blindness isn’t genetic or spread by contact. If you hang around us you won’t catch it, I promise.

I think it goes without saying that we are an unusual bunch. So, I thought I’d share five things I’d like you to know. These points don’t exclusively pertain to just my family, so since I doubt I’ll ever meet all of you in person, feel free to apply these principles to other blind individuals you may encounter.

1. Blind kids still love and want to play.

Yes, I know my kids’ eyes don’t work. This doesn’t mean that they don’t enjoy playing many of the same games as sighted kids. They love hide and seek and tag, for example. They also love to color; I personally enjoy the irony of that. Actually, both my kids have a favorite color, and my daughter picks out clothing based on that preference. This means that I’m supposed to keep track of my wardrobe as well as hers. This, of course, isn’t happening; I usually just go ask my husband.

So as I hope you can see, no pun intended, my kids, even though blind, are just like every other kid. Treat them accordingly. Teach your kids not to be afraid to approach them and ask if they want to play. If you’re not sure how they could participate in something, don’t just assume they can’t. Ask and find out.

2. Sometimes all that’s needed is thoughtfulness.

Let’s take tag as an example. Obviously, without sight, my kids can’t freely run screaming at the top of their lungs around the playground or house. Well, they’ve got the screaming part down, but the running component is a bit trickier for them. This doesn’t mean, though, that they should be excluded from active games. A simple solution is for someone to ask if they want to run with them. Blind kids can keep up; their legs work fine. This encourages cooperation and socialization, and we all want those two things for our kids, right?

3. Lack of eye contact doesn’t mean lack of interest.

I can’t stress this one enough. I know for most people, whether adults or kids, it is really strange to have someone talking to you who isn’t making direct eye contact with you. I get that, I really do, but think for a moment about how your general dependence on eye contact makes us blind individuals of the world feel. I often watch my kids try and introduce themselves to others or talk to someone whose voice they recognize, only to have the person not realize they are talking to them and walk away before their sentence was finished. It can feel rather awkward, to say the least.

My kids (and myself, for that matter) want to interact and be social as much as anyone. Pay attention to the words we are saying and don’t just rely on where our eyes are looking, or more accurately, not looking. Blind persons just have to make extensive use of verbal cues. Oh, and speaking of verbal cues, if we’re in the middle of a conversation, and you have to leave, please just let me, or my kids, know that fact. It makes one feel very silly to be in the middle of a conversation, only to realize after a couple of minutes, that no one has said anything in a while.

4. Vision is amazing.

Seriously, you have no idea what an incredible super-power you have. You can step into a room and immediately know what your kids are doing or not doing, even if they’re on the other side of the room. You can look around and find that one little missing toy that your kid can’t do without and you don’t have to walk the whole length of the room to find the elusive, stupid object that will be played with for approximately one minute before being lost again.

You can literally watch them grow and see all the little, yet so significant, changes. You can sit on a bench at a park or playground and watch them play at a distance, while you get a few moments of relative quiet. You can tell at a glance if their clothes are acceptable to wear out of the house. There are multiple times a day where I am jealous of my husband. I’m not writing this to elicit sympathy but to encourage you to truly appreciate what you have. It’s a gift; treasure it as such.

5. I love coffee and chocolate just as much as any mom.

Well, that pretty much sums it up. So, if we happen to meet at a park or my kids’ piano or gymnastics classes, and you wonder what you should say to this blind woman, it couldn’t hurt to start a conversation about your favorite coffee shop or dessert. Parenting is a wild experience, whether blind or sighted, but I think chocolate and/or coffee is common ground for all of us.

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To The Mom Whose Nest Will Never Be Empty

Dear Fellow Mom,

I know your island feels completely deserted at times. All at once it’s back again — that all too familiar twinge.

Like a sharp prick.

Tiny, but strong enough to course through your entire body.

Dear Mama, I know you’ve seen the amazing TV shows, the battle to change the disability stigma, the war for inclusion… the victories won over the past few years for our children with different abilities.

Our kids are doing so much more than society every imagined, or some doctors could ever believe.

Except for you mama, your miracle has yet to come.

You watch like a stranger on the shore, while other children dive in the water and experience great feats.

Reality — like its fearless, have-no-filter relative named “Truth,” has belted you cold in the face with a bitter sting.

And the welt remains, like numb fingertips in blustery winter.

I know you feel like no one will understand.

The weight that you secretly carry — no one really knows how you bear it upon on your back.

That pressure to be a mother, wife, sister, aunt, caregiver, cook, cleaner, and walking Google.

Yet, even so, your brain tells you that you are never enough.

My fellow Mama, I’ve spent the last 8 months in silent grief and sadness.

This letter serves as your official note of confirmation — it’s okay to feel what you feel.

As a mother of a child with complex needs (which include autism and Down syndrome), the cliff of adulthood is terrifying.

And while you silently watch as other children receive college acceptance letters, new cars, fill out FASFA forms, make graduation plans, and prepare to leave the nest, you know deep down…

Your nest will never be empty.

Friend, I know you sometimes feel guilty, as if you could do more, but I bet that your friends would say that you are a SUPERMOM.

Girl… I am pleading with you to take the liberty to cry, scream, yell, and grieve.

Just be careful.

Don’t let bitterness cloud your view.

I can’t promise fairness, or even that things will be easier, but I can tell you that life will go on.

My friend, here’s permission to purposely pick up your rose-colored glasses.

To find the good and the beauty of this life.

I know your secret truth.

The fact that your nest is full for a lifetime is its own miracle.

Your child was never expected to live, or even have function.

But, I know that your child, or now adult, has exceeded expectations.

And so will you in life.

Hey Mama,

I challenge you to pick up your overcrowded garbage can and toss in that old thief called “comparison.”

Accept that your life won’t look like everyone else’s.

But that won’t mean it’s not beautiful.

One day at a time.

One victory, no matter how small, at a time.

In truth, a full nest means a lifetime of unbridled love.

I’m pretty sure there’s not much more you could ask for than that.

Signed,

A Fellow Forever-Nester

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As A Mom To A Special Needs Child, This Is What I Want To Say To My Friends

Dear friend,

Can you tell me what it’s like? I promise, I’m not intending to be rude, just genuinely curious.

The only child I have, well, she is different than the others, and while I am not sad or disappointed, I am curious how it feels to be you, instead of me.

How does it feel to hear your baby say, “Mama”? Does it fill your soul like the smell of cookies baking? Did you cry tears of joy? When they grab toys and figure out their intricacies, do you marvel at their hands? Did you swell with pride?

I know it must be exhausting to watch that precarious tiny human all day. When we moms joke that we kept the kids alive all day, your meaning must be much different than mine. How was it, when they were tiny and new, to hold them without cords or tubes? Did they look you in the eyes? Did they latch onto your chest, willingly and eager? Did you get to hold them in your hospital bed as you recovered?

I wonder if I am missing out. We both have our blessing, but mine came with different instructions than yours. I love her and I would never change a thing, but some days I marvel as your child communicates so easily, and I catch myself realizing that everything you and I have in common may not be much at all.

My home is not baby-proofed, because my baby doesn’t try to get into things. She lies there without a word, innocently entertained in the same toy for hours. Do you get to explain the things that happen? Does your baby understand why you correct her? Mine does not, and it kills me. I don’t even know if she knows I love her. But God, do I love her.

Dear friend, don’t be mad when I don’t always want to see you. Some days, it just hurts to know that there are parts to parenthood I was unequivocally denied. I get bitter, not because my lot is less than yours, but because it isn’t the lot I had envisioned.

I mourn more than just the words and steps, but the future and its overwhelming uncertainty. I mourn her wedding day. I mourn her first car. I mourn the grandchildren I will never have.

My friend, I am sorry if this makes you uncomfortable. I feel uncomfortable that I feel this way… that I watch you in awe and wonder. Witnessing your life is like watching a movie’s alternate ending, and my curiosity just gets the better of me.

I hope you understand, my friend.

Sincerely, the special needs mom

The post As A Mom To A Special Needs Child, This Is What I Want To Say To My Friends appeared first on Scary Mommy.

What Worries Me Most About My Autistic Child Growing Up

Sometimes it feels like we’re raising our boy under a ticking clock.

To some degree, every parent feels that way. We tend to judge ourselves by how quickly our kids reach certain milestones. The points at which our children start to walk, talk, read, etc., tend to set the standard by which we judge their progress, along with our own.

It’s no different when you’re parenting a child with special needs. If anything else, it just tends to add to the pressure, because you become desperate for your child to “catch up.” It’s not so much about them keeping up with their peers. It’s about those little moments of hope and reassurance that your child will be “okay” — that they’re reaching a point where they’re becoming functional in a world that wasn’t designed for them.

Which brings me back to that ticking clock.

My boy is the very definition of “awesome.” He’s funny, sweet, and just about the most loving little man you could ever hope to meet. He continually astounds me with how well he responds to therapy, and blows every preconception and expectation I have away with each new skill he picks up.

That said, he does have some developmental delays. At 6, he’s barely verbal and can at times become overwhelmed and lash out. Not often, but it happens. He’s also not all that great with understanding personal space. He’ll run up to anyone who just happens to catch his attention and lock himself around their leg like a sloth looking for a good branch to nap from (especially if he thinks they’re “pretty”).

These unsuspecting folks get a little (understandably) freaked out at first, but once I apologize for the intrusion and explain the situation, the person involved will usually smile and waive it off. How could they not? He’s an adorable little six year old with curls and a toothy grin that can melt the coldest heart.

He’s not always going to be six, though. Therein lies the problem.

We cut children a lot of slack. We have to, because they come into this world as blank slates and the maturing process is a long and winding one. We tend to shrug off certain behaviors because we just tell ourselves “they’ll grow out of it.” One small problem with that. He’s not going to outgrow being autistic.

It’s not a phase, not a stage, not something “he’s going to get over.” He’s always going to be autistic. Yes, he’s going to continue to develop, and of course we’re going to give him all the support he needs to keep doing so, but his benchmarks aren’t the same as a “neurotypical” child. I’ve no doubt, based on what I’ve seen of him so far, that he’s going to hit the majority of them. It’s not going to be “on schedule,” though. Even when he does, he’s still going to stim. Still break out into random dancing. Still want to come up and give people great big hugs.

People don’t tend to have a problem with that coming from a child. It’s when those behaviors don’t disappear as a teenager and young adult that they start to have a problem. That’s why it sometimes feels like we’re working under a ticking clock. The unfortunate truth is that the world only has so much patience. We only give kids so much time to be children, and then we expect them to grow up, stop playing, and make it on their own.

That’s not how it’s going to work with my child, though. Not with him or so many other children who struggle with developmental delays due to their circumstances. They’re not going to suddenly turn 18, grow up, move out, and get 9 to 5’s. They’ll always need support. Above all else, they’ll always need patience.

Understand that there isn’t going to come a certain age where these kids are suddenly going to “get it all together.” That’s not how it works. It’s not just autistic children who need our patience, love, and support. It’s also autistic adults. There are some behaviors that they are never going to outgrow, or should even have to (well, except for the latching on to pretty people’s legs; I promise, we are working on that!).

So please, keep all this in mind when you see that 14-year-old still playing with age-inappropriate toys, or that 20-year-old who refuses to wear any shirt that doesn’t have Mickey or Minnie on it. Don’t dismiss them because they haven’t been able to stick to the schedule society dictates. They’re not incompetent, they’re not less. Truth to tell, they’re using the clock better than we so-called “adults” do.

Keep playing. Keep learning. Delight in the world around you. Hold onto those things that bring you joy. We’d all be much better off if we could do the same.

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