Category: Uncategorized

The Sheer Joy of a Child

I’m sitting here, trying to hold back tears on a day that is just so hard. I generally feel like I hold it together ok and am fairly strong day in and day out. After a week of solo parenting, though, the shit is really hitting the fan today. My nonverbal almost 5-year-old’s behaviors are ramping up something fierce within the last couple of weeks. I’m talking an increase in loud, constant, ear-piercing “vocalizations” (AKA constant screaming at the top of his lungs, to express all of his emotions), head hitting that leaves bruises from his own fists, and aggressive behavior toward his little sister that no amount of redirection can curb. And today it has all become too much and I can’t stop the tears from falling.

Social media is not the place to look when you’re feeling like this, but it has become habit as my escape in this isolating world of special needs parenting. I don’t know if it’s timing or just my foul mood, but post after post from friends detail “the sheer joy of their child” accompanied by photos of said children just doing typical, everyday, joyful, fun kid stuff. Like going down slides, running and rolling around in sand, playing and digging in soil. You get the idea. Simple, easy kid stuff. And it makes me absolutely green with envy. My son will not do any of those things, therefore making those activities anything but fun or easy. All of the things that I would have taken total advantage of and not had to think twice about if my son were “typical”. But he’s not. And so those activities are anything but typical or fun for him.

We watch in amazement at how quickly our daughter picks up on certain activities and screams or giggles with joy at many of the activities that are associated with young children. And it is both enjoyable and excruciating to watch. I love that she can move so easily through life so far in her whole 13 months on this earth, but it only further highlights how hard my son’s life is, and that he may never be able to do all of the skills that she can already do now. And it breaks this mama’s heart. Over and over again. Will this ever get easier?

*photo courtesy of Shutterstock

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Playgrounds

Playgrounds are enjoyable places for the majority of the kids around us. But they have never really been fun for my son, and in turn that makes them not so enjoyable for me either.

Most days when we leave the preschool classroom, other kids are running around and playing on all the equipment, but CJ is either fatigued from the morning of school, over-stimulated, hungry, or some combination of all of that…and usually vocalizing his frustration about whatever is bothering him by yelling, screaming, or crying. Since he is nonverbal, that is his go-to for communicating.

Sometimes I veer him toward the playground, thinking maybe today is the day you will play and enjoy like all the other kids. But that usually ends in even louder and more upset protests from him that make it clear he isn’t enjoying himself. And the looks from others at the playground make it so that I’m not enjoying it either. And so the next day we go back to our routine of heading straight to the car, sometimes to go immediately to some kind of therapy appointment for him.

I can only imagine that, like in this blog post, the kids will continue to get more brazen with their looks and eyerolls. All at the expense of my son, who is different. He was three the first time I had to overhear kids from his class making fun of him. THREE. So I can only imagine how much worse it will get, and I’m not sure my mama heart can handle it.

My Son, You are Different

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The One Thing I Would Do Differently 

I think a lot of us go through some major denial throughout the process of our child being diagnosed with a condition we never saw coming. Through the beginning of the process, after we got past some of the scarier possible diagnoses (like Neuroblastoma), I think my husband and I convinced ourselves that our son’s genetic deletion diagnosis wouldn’t end up meaning much in the long run and that he would just “catch up”.

Well, he is three-and-a-half years old now, and the reality of our situation has set in. I remember the suggestion of applying for Medicaid was thrown around early in the process, and given that my husband’s insurance plan at the time was really decent we didn’t think we’d really need it,  because I think in the back of our minds at thought we be moving past this stage soon enough. The more people I chatted with about Medicaid and the different Waivers that Colorado offers to help cover certain things, I felt maybe it would be worth looking into, but the process and differences between all of the different options also seemed very foreign, confusing, and intimidating. And this is coming from someone who is fairly well educated and used to being able to navigate my way through life.

So when our son was hospitalized for RSV in January 2017, I took the waiver paperwork with me and got started, with the goal of finishing it before he was released at the forefront of my mind. Things like the idea of respite hours sounded downright magical, but everyone I talked to who was more knowledgeable on the subject let me know that in order to be approved for the CES waiver you would have to prove many things, including the your child’s need to have interventions throughout the night. That sounded really serious to me, and at the time I wasn’t sure what we were doing would qualify. Further information and explanations later led me to believe that we would indeed qualify. But I let the doubt get to me during that hospital stay, and I took the paperwork home with us, only half filled out. That pile of papers (which later came to include the disability and Medicaid applications) continued to sit, and continued to weigh heavily on my mind. I don’t know why I let it intimidate me so much, but I did. Even grad school didn’t have this affect on me!

Finally, at the beginning of December 2017, I turned the entire pile of filled out papers complete with documentation in to the correct office (DDRC)! When I followed up a couple of weeks later and found out they had “misplaced” said pile of paperwork, I about lost my mind. But they found it, and that is another story for another day.

Long story short, though, is if you think you may need any of those services, waivers, Medicaid, etc. DO NOT WAIT! Make yourself fill out the papers, and let the powers that be decide if your family qualifies or not. Because I wasted all of this time, I cannot apply to be my son’s CNA yet since that is dependent on Medicaid approval. I am kicking myself for not turning in all the paperwork back in January (or even before that), because now I have only delayed an already long process! So if you’re questioning it, just turn in the paperwork as soon as humanly possible and go from there. That is one big thing I would change about this process so far. 

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