The Secret Life of Special Needs Moms

Y’all, being a Special Needs Mom is unique. It’s hard. It’s exhausting. It’s rewarding in its own way. It’s special. 

To the outside world, it may seem like we – special needs parents – are steadfast, strong, and unbreakable. We speak up for our kids, we never back down, and we have an infinite amount of patience. But, behind closed doors, we feel weak. We question ourselves. Tears flow easily. We always feel guilty. 

Over the past three years, I have befriended so many Mamas and Dads just like us on Facebook, Instagram, and WordPress, and my feeds are peppered with questions and statements like:

My son is doing this strange thing with his arm. Here’s a video – is it a seizure?

My child hasn’t pooped in days. Is this normal?

He’s not drinking again. Do I take him in?

Well, another trip to the ER. Let’s hope we get to go home tonight.

Just found out my daughter has to have double hip surgery. I’m so nervous!

Doctors are saying my infant son’s head isn’t growing. I’m super paranoid about it and am now measuring it every day. Is this normal?

I’m just so tired and no one seems to support me or understand what I’m going through

This is our norm. It’s what we face every day. It’s our secret little world, one that only special needs parents “get”. Despite what many parents of typical children say, no, our journey is not like theirs. 

Time can make the special needs journey easier. Eventually, you find strength in yourself to stand up to a therapist who doesn’t believe in your child. You change doctors who don’t have the same philosophies as you without feeling guilt. You start seeing your child as your child and not as a diagnosis.

One thing that I have struggled with since day one are stares and comments as we venture out into the public. When Solly was eight months old, I remember feeling hurt when someone commented that they thought he was only 3 or 4 months old because of his gross motor delay. I wrote about another time when a cashier mentioned that Solly reminded her of her grandson who had CP and autism and was institutionalized. As Solly gets older and his disability becomes more obvious, the stares and whispers of strangers are increasing. 

This used to keep me holed up at home. Just the thought of the possibility of an off-color remark about my son turned me into a recluse.  But in the past year, things have started to change. Yes, for many reasons, it’s still difficult for us to get out and enjoy things as typical families would – family gatherings, neighborhood barbecues, trips to the park. But we are starting to enjoy adventures like these in our own way. 

A few weekends ago, we headed out to the Cheekwood Estate and Gardens. They’d recently opened up Cheekwood Harvest, which had been on my list of things to do in Nashville. When we got there, we made a beeline for the pumpkin patch. I pulled Solly out of the stroller and plopped him down on his feet, keeping him steady with my hands. I showed him the pumpkin house, and all the pumpkins in the pumpkin patch – big, little, white, green, orange. As I pointed out all the pumpkins, I slid my hands under his arms and whispered “kick, kick, Solly”. He began taking steps with my support and together we walked the length of the pumpkin patch. I’m sure we got loads of looks and stares – Solly sporting his AFO and SWASH braces among the perfectly dressed toddlers of Nashville, all decked out for their Fall photos. But in that moment, I could have cared less. My son was taking assisted steps and checking out the pumpkins with me. For once, my secret special needs world was not-so-secret anymore and I couldn’t be prouder of it.

Walking through the pumpkin patch

An Intense Intensive

This week, Solly had his first ever PT intensive at Full Circle Therapy, the center where he does hippotherapy.

It was intense! (Seriously. Solly took a 4 hour nap yesterday!)

Each day started bright and early at 8am, which meant an even earlier wake up call than usual for Sol. Our goal for the week was to increase his mobility, so Jennifer, his PT, focused each day on activities to strengthen his hamstrings, hip flexors, glutes, and all walking muscles, as well as other activities to bring awareness to these parts of his body. She used a combination of weight-lifting via pulleys, a Spider Cage, mechanical horse, treadmill, swing, and therasuit to target his walking muscles and core, quickly moving to a new activity when Solly started to appear “over it” to keep him interested and engaged. She also tried having him walk in his various braces with his KidWalk, a gait trainer, crutches, and with hands under his arms for support, all trying to trigger and activate different muscles and so he wouldn’t get stuck in one pattern.

It was fascinating, exhausting, and, in the end, SUPER productive. We went from Sol really struggling on Monday to engage his flexors to walk forward on the treadmill to him walking on his knees and feet with assistance under his arms on Friday. We have a long way to go, but now we understand that Solly’s issues with walking stem from a motor planning issue – his legs get stuck in extension and his brain has trouble telling them to break up any high tone to bend the knee. Jennifer sent us home with three simple PT activities to focus on over the next few months and, because we see her every week for hippotherapy, she can check in on his progress and help us makes tweaks. We’ll focus on those activities for walking until the end of October, when we travel to Tampa for a 3 week Therasuit intensive.

We are so thankful to have found Jennifer. She is very in tune with Solly’s needs and thinks the sky is the limit for him. We couldn’t agree more.

Here are some photos taken throughout the week:

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And my favorite video of reciprocal knee walking (!!!):

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Augmentative and Alternative Communication

Even though one of Sol’s strokes completely wiped out his speech center, speech is one thing that I never worried about as much as I did gross and fine motor skill development. He’s always been behind in speech, especially expressive speech, but it’s one area where we continue to see gains, even if it’s just a new sound. Before Sol’s first birthday, I met with a neuro-developmental researcher who was studying speech development after stroke and much of her research found that if one area of the brain was damaged, its mirror would take over the skills typically assigned to that section of the brain. Because the right side of Solly’s brain had much more healthy brain tissue than the left, she assured me that the right side would likely rewire to house his speech.

To date, Solly has few consistent words other than “hi” “bye bye” and “dada”. He continues to experiment with new sounds, showing new control over his tongue, particularly after our recent hyperbaric oxygen therapy. Yet, because he has difficulty with motor control and has a hard time with sign language, we find it hard to know what he wants. His inability to communicate with us pushed us to want to find other means of communication, so when our developmental pediatrician suggested an Augmentative and Alternative Communication (AAC) device evaluation, we jumped at the opportunity.

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Playing on the iPad. Easiest evalation ever!

Last Friday morning, Solly and I got up bright and early for an 8am evaluation at the Vanderbilt Bill Wilkerson Center. We met with a very sweet speech therapist who sat down and asked about Solly’s schedule, how he is communicating, what he likes to do the most, and what his gross and fine motor skills look like. She also asked about the speech therapy that we’d done in the past year and learned about our foray into AAC, which has consisted of a Big Mac button, a Twin Talks device, and communication via simple pictures. We also talked about the simple signs that Solly knows (“all done” and “more”) and the words he uses consistently.

 

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The GoTalk 4+

Then, for the next hour, the speech therapist played with Solly. They played music games on an iPad, worked with simple low tech communication devices, and high tech communication devices that looked very similar to an iPad. Afterwards, she explained to me that she was looking at how he used his hands to make selections on the devices, how he organized his motor skills to make those selections, and how he made selections when the device was placed on his left side versus his right side. Based on her findings, she suggested we start with a low tech communication device similar to the GoTalk 4+ or GoTalk 9+, thinking these would be a good way to start communicating with Solly until he’s ready for a more high tech device or until he’s able to speak on his own.

Next week, we start with a new speech therapist at High Hopes in Franklin. After we meet with her and set Solly’s goals, we’ll buy or borrow a low tech device and get started communicating (better) with our kiddo. We’re excited to see where this goes!

On Vision and HBOT

For those of you who have been following our blog since the beginning, you might remember my constant worry over Solly’s vision. Sol was born with his eyes somewhat stuck looking towards the left. A part of the initial prognosis given was that he could be blind. (Note to Mom’s new to a pediatric stroke diagnosis: take the first prognosis, however grim it may be, and consider it only a possible outcome. Your child CAN and most likely WILL do much more than doctors believe he or she will after a stroke.) Even after rigorous vision therapy, we still got diagnoses – from several different doctors, many giving conflicting thoughts – of delayed visual maturation, CVI (cortical vision impairment), strabismus, nystagmus, possible visual field cut, possible double vision, and so on. With all these possible diagnoses swirling around us, even though it seemed that Solly was compensating well for whatever vision issues he had, we couldn’t be sure how well he was seeing. It was always a point of major frustration.

With hyperbaric oxygen therapy (HBOT), we had read of many children having improved vision after a full course of treatment. In our own experience, we saw many instances where Solly was interacting with his surrounding environment in ways we’ve never seen before, thinking that maybe it helped his vision and helped his brain make new connections as a result. But whenever we think Solly is interacting in new ways, we question IF he is and WHAT, if anything, helped his brain make those connections. We try so many things that we can’t always be sure what move was the right one.

However, after an appointment with Sol’s developmental optometrist earlier this week, we are no longer questioning these new connections: HBOT did, in fact, help Solly’s vision.

Amusing ourselves at an early morning optometry appointment


This past October, at our last appointment with our optometrist, he ran a test on Sol where he set up sensors on his head and had Solly watch a series of images flash on a screen. The sensors provided data into what Solly was seeing and how well his brain was processing the images. We were delighted when the results came back as “within normal limits.”

This week, we saw the same doctor for the first time since October and he ran the same test. After he examined Solly’s eyes, he told me that his vision had improved even more in the past 8 months. He asked if we’d been working hard on our home vision therapy exercises. I said, no, we simply just try to expose Solly to as many new environments as we can, but that we’d also done a full treatment of HBOT and thought that had a great impact on his vision. His optometrist not only agreed that HBOT had helped but he also encouraged us to do another round of treatment as our schedules allowed. We will continue to be followed by Solly’s optometrist every 6 months, but right now, no need to worry about glasses, patching, or surgery at this point. 

We’ll count this news as one big win for HBOT!

Hippotherapy

Three weeks ago, Solly had his first hippotherapy session. Ever since Solly turned two, the age when children are generally allowed to start horse therapy, I have been anxious to get him on a horse.

In December, he had an evaluation at Saddle Up!, a therapeutic riding center in nearby Franklin. In the short 20 minute evaluation, I got a clear picture of how beneficial hippotherapy could be for him: he smiled and giggled while on horseback as the horse moved at a walk, halted, and circled. Though it may not seem like those simple actions are doing much, they are, in fact, building much-needed core strength, balance, and movement patterns in Solly’s body and brain. Unfortunately, at the time of our evaluation, Saddle Up! was undergoing some therapy staff changes and as much as the physical therapist who completed Solly’s evaluation wanted to begin treating him, there simply wasn’t a spot for him and he was placed on the waiting list. Surprisingly, there are only two therapeutic riding centers in Nashville: Saddle Up! in Franklin is a quick 20 minute drive and Full Circle Therapy in Smyrna is a much father trek. I preferred to not spend too much time driving to and from therapy appointments so I considered Saddle Up! our only option.

Solly’s evaluation at Saddle Up!

Fast forward six months, in the recovery room for Solly’s SPML surgery, his orthopedic surgeon told us the best way for his hips to rebound and strengthen after surgery is to think of putting him on a horse. I’m sure he meant this figuratively – creating a horse shape between his legs, especially any time he is out of his brace. For those of you who know me personally know that I’ve always been a horse-crazy nut, so a light went off in my head as the doctor said this and I took him quite literally – it was time to get Solly on a horse! I decided extra time in the car was worth the benefits of this type of therapy, so I got in touch with Full Circle Therapy. Days later, we completed Solly’s evaluation and were able to find a spot on his new therapist Jennifer’s hippotherapy calendar. We started immediately.

We are now three therapy treatments in and we’ve have already seen some benefits. I cannot wait to see how Solly continues to thrive with his weekly riding therapy and hear both his and Bea’s giggles when they both get to see Solly’s therapy pony each week.

Solly’s all smiles on Cheyenne, his therapy pony