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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Sleep. Who needs it?

I do!! I need sleep!!! But apparently my children do not. I learned long ago that I am not in a good place when I don’t get enough sleep. I get grouchy, irritable, and sometimes have headaches associated with the lack of sleep. Not to mention the stress that comes with just wishing and willing your kids to sleep and nothing you do will get them there.

With our son, it can be blamed on his genetic microdeletion; anyway that’s what one of his doctors told us somewhere along the way in the early days after his diagnosis. Something along the lines of chromo kids sometimes get disregulated and they mix up night and day. Oh neat. That sounds fun. Only it isn’t at all. We’re currently in the midst of one of these disregulation cycles or whatever you want to call it. So for the past couple of weeks, Little Man’s new schedule is to wake up sometime in the 3:00 AM hour and stay awake until 5:00 or so, then crash for another couple hours and drag out of bed for me to get him ready for preschool on the days that he goes. Only the latest bit of fun to be thrown in is that my husband (Little Man’s dad) is out of town for work, and the trip keeps getting extended. So what was going to be “four-ish days” is now heavily pushing toward the “ish” part of that guesstimate and mama might just lose her mind.

One other fun little addition to this sleep nightmare is Little Man’s little sister. She is 10-months-old and still breastfeeds throughout the night, which in essence makes me her human pacifier, and – try as we might – she has absolutely no interest in actual pacifiers, which her brother still loves from time to time at 4-and-a-half years old. She is also still invading our bedroom, so I’ll work to get her down to sleep up there, then trudge down the stairs and make an attempt at getting her brother settled (after he’s had time for his sleep meds to start kicking in, and had his dose of seizure meds). For a couple of months he toyed with us and started to fall asleep in his own bed, with a bottle but without our presence to help calm him. Right around the time that these fun crack of dawn wakeups started happening again, he decided to also become a wild man at bedtime. So if I leave him for any time at all in his bed, it will be about two minutes before I hear his feet thud onto the floor as he gets up, rips his oxygen cannula off (or just gets tangled in it), and resettles himself on the big Luv Sac in his room so he can push Scout’s buttons while continuing to drink his bottle, slam his feet onto the floor, and occasional scream excitedly. Not exactly the picture of a relaxed child getting ready to sleep for the night. Some evenings he leaves his room and returns to the magical laundry room, but that’s a subject for another day.

So in a moment of desperation yesterday, I drove to my friend’s house and bought a bottle of the CBD oil she sells and has touted as a miracle worker for her boys’ (both on the spectrum) sleep and general moods. We were really wanting to talk to doctors at a specific office down in Denver before taking this step, but given that we had asked both of our son’s neurologists at previous appointments if CBD plays nice with his current meds, they didn’t seem too worried but wanted to be kept updated if we did decide to try it, especially if we are still wanting to try to wean seizure meds at that time. We’ve just been nervous about pulling the trigger, so no time like the present desperate time, right?! If last night is any indication of how it might go, I could be all about it! After I laid with him in a partial body hold to get him to fall asleep, he still didn’t seem to be resting totally peacefully (I could see him on the baby monitor playing with his hands after I thought he was asleep, and when I checked throughout the night I sometimes couldn’t see him so I thought he had shifted to a part of his bed that’s not in view or was up and playing), but when I went in around 7:00 this morning, he was still in bed (awake) under his light blanket and weighted blanket! He doesn’t seem to grasp the concept of usage of blankets at this point, so I’m confident he hadn’t actually gotten out of bed yet. Color me cautiously excited.

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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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“Comparison is the Thief of Joy”

In the years since my son was born, I find myself thinking that whomever quotes Teddy Roosevelt by stating that “Comparison is the Thief of Joy” must not have much going wrong in their lives, or something so heavy going on in their lives that it is always at the forefront of their mind and emotions. I get where people are coming from when they quote this, and the quote itself certainly does make sense. If you want to drive yourself crazy, compare yourself and your situation to others.

But then the other day,  a friend added me to a special needs specific Facebook support group, for parents of children with special needs. Upon visiting the page for the first time, I could immediately relate to a post by a mom who just needed to vent about her hard day and consequent big emotions. In a nutshell, she was recounting an experience from earlier in her day where she had been somewhere with her child who has significant special needs and is quite delayed, and she mentioned how hard it hit her that day (while watching other children her girl’s age) just how far behind her little one is, and how much it hurts. She also talked about how those feeling come in waves. Some days she is convinced that she has come to terms with it all, and then {BAM!} out of nowhere the feelings will blindside her as she is brought back to her own reality and sees how far behind her daughter is. It hurts a mama’s heart to the very core. I thought, “I’m right there with you, mama. I get it. I go through the same waves of emotion and hurt.” Then I opened up the comments and was flabbergasted to see how many people in this group (who should only be in there if they, too, have a child with special needs) immediately jumped in and told this mom that she should NEVER compare, and quoted the dear former president’s quote. I quickly went from a feeling of solidarity to wondering who the *f* are all these Righteous Ritas who are jumping in and telling this mom to stop feeling how she feels when she sees other kids her daughter’s age who are so much more advanced?! Maybe they have all reached some point of zen in the progression of what it means to be a special needs parent that I just haven’t reached yet, so I just don’t understand?? I will freely admit that I feel how that mama feels almost every time we go someplace that has children around my son’s age, and I have to watch as they walk, talk, feed themselves, interact with other children, show that they understand when their parents talk to them, etc, etc, etc. I don’t think parents of typical children will EVER know how much these simple interactions hurt my heart, but I would expect a FB room full of SN parents to “get it” and be a little more empathetic! I guess this is why some people say you should stay off of social media, too? Another thing that seems much easier said than done!

 

(Feature photo from Reddit.com.)

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All I Want for Christmas

As I’ve been pondering this holiday season and what it all really means, I hear some of the old time favorites recited, like “All I Want for Christmas is My Two Front Teeth” or “I’m Dreaming of a White Christmas”, and I think about what it all means to me. Christmas was never a big deal in my family when I was growing up, and many of the traditions, hopes, and beliefs associated with this time of year are sometimes lost on me. I started thinking about what would be the one big wish I’d like to see come true for Christmas, and that would be to see my almost three-and-a-half year old son walk on his own for the first time.

I understand that most parents don’t have to hope or wish for something like this to come true for their child(ren); it just happens, and usually around the time that it typically happens for most children. But when you have a child with numerous health concerns and delays, EVERYTHING moves to the category of stuff you just don’t take for granted. I see mothers of typical children commenting their woes online around this time of year about how their precious little baby just wouldn’t cooperate when it came time to sit on Santa’s lap, sometimes even accompanying their comment is a sobbing emoji, and I can’t help but think, “REALLY?! This is what parents of typical kids get worked up about??” I try to imagine what it would be like if these things that seem so trivial to our family were really our main concerns about our son, instead of his inability to walk, talk, or feed himself at this point of his life. I can’t help but have feelings of anger and bitterness well up inside when I think about it all too much. Your point of view and the way you expect things to go certainly have to change when you are faced with raising a non-neurotypical child, and oh how it hurts sometimes!

 

(Featured image from Indyschild.com.)

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