Two Disabilities; Two Reactions; One Child

      One of these pictures elicits kindness and compassion from people in my community and on the internet. The other photo seems to bring out the worst in those same people. The irony is it is the same child, just two different disabilities.

       

      My two-year-old just doesn’t seem to be able to catch a break. At just over a year old, he was diagnosed with a peanut allergy. Just like that everyday places like the park became threatening. Shortly after his diagnosis I posted a question on my town’s Facebook page “Does our town have a peanut free school”? We live in a school of choice state, so it was possible that at least one of the three elementary schools in our town was completely nut free. Despite being a yes or no question, my post accumulated nearly 300 comments from community members. Many were entirely negative. I was told I should home school my son because of his allergy. I was also told “How dare you claim his food allergy is a disability” after explaining that my son has a right to “free and appropriate education” under the “American’s with Disability Act” (For the record, food allergies are considered a disability under ADA).  On a different Facebook post, some internet stranger implied I should allow my child to die by telling me “you should just allow natural selection to do its job” so his child could bring a peanut butter sandwich to school.  He clearly doesn’t understand what natural selection means. Another parent recently posted a video explaining the Teal Pumpkin Project to our town’s Facebook page. While many people were supportive of the initiative, some people took offense to it. Proclaiming “the world isn’t fair” and “these kids just need to suck it up and deal with [not being able to trick or treat] it”. One woman took offense to using the holiday to create awareness stating “this isn’t what Holidays are about”.  I also posted a reminder at the beginning of summer asking people if they chose to bring peanut products to the park, could they please eat them at the picnic tables and not near the equipment. I was told I should not bring my child to the park. The amount of cruelty I see on a daily basis regarding food allergies is astounding. The fact that someone would wish my child dead just so theirs could bring a peanut butter sandwich to school is appalling.

Shortly after turning 2, my son was diagnosed with a Chiari I Malformation. A part of his brain called the cerebral tonsils is being pushed out of his skull causing a variety of symptoms. He will most likely need to have a decompression surgery within the next 1-2 years.  Around the same time my son was fitted for his first set of ankle-foot orthotics, AFOs. The cause of his spasticity, toe walking, and gait issues is unknown at this time. What we do know is that the braces have helped him tremendously. Like any 2-year-old, my son loves the park. The park closest to us is the community center park. He is also obsessed with swings. The community center park only has big kid swings and baby swings. Once he got his braces, it became extremely difficult to get him into and out of the baby swings. I once again posted a question to my town’s Facebook page asking if anyone knew of any grants for special needs playground equipment. I explained my son recently got leg braces and it was a challenge to use the swings. People in my community were extremely helpful with getting me in contact with someone at the rec center. Other people said they would help with a Kickstarter campaign if needed because the park “should be accessible for all children”.  The kindness was overwhelming and greatly appreciated. Yet the irony of it all had me laughing. Just months prior I was told by members of the same community I should keep my child home from the park due to his peanut allergy disability. Now this community is telling me that the park should be accessible for all.  I don’t believe anyone made the connection that it was the same child they had vilified in the past.

      As a society, we have come a long way with regards to how we treat individuals with disabilities, especially children. It is apparent however, that the kindness and compassion only extends to children with disabilities that can be seen.  The Universe has presented my child with two uniquely challenging disabilities. One of which brings out the best in our community. The other the worst. When I look at him though, I don’t see a child with disabilities. I see a child. My child. One who deserves to be treated with kindness in all aspects of his life. It is my hope that one day my community will see it too.

Matthew, 2 years old 2016

Holding Pattern

     On Friday we saw the pediatric neurosurgeon. Matt was having a good day, so many of his typical symptoms were not on display. It was great he was having a good day, but made it harder to explain what we see at home in terms of symptoms.

     The doctor briefly looked at his scans and confirmed the Chiari diagnosis. She also noted that he did not have a syrinx at this time. One can develop at any time though.  He had some blockage of cerebral spinal fluid on a few images, but it wasn’t a complete blockage.

     She also wasn’t concerned about the mild curvature of his thoracic spine, saying it might have been caused by movement. Which to me doesn’t make sense, as he was sedated under general anesthesia and strapped to the table.  This is something that I want to watch carefully. I am also considering getting a second read on the thoracic films.  This would be a deciding factor on how soon he would need to have the decompression surgery. I want to make sure that by waiting, we are not causing more problems for him down the road.

He also does not have a tethered cord. Which is awesome, but at the same time we are back to square one with his gait and spasticity. Of course, since he was having a good day, she didn’t see much of that behavior. She dismissed a lot what we were saying regarding his legs and gait, which irritated me.  Matt has been seeing a physical therapist weekly for almost a year. We did not enter into braces lightly, and both his physical therapist and myself were surprised when, after evaluating him, the orthotist recommended the full calf AFOs instead of braces that stop right above the ankle.  Since he began wearing the braces last month, he doesn’t fall.  Before braces he was falling 2-3 dozen times a day on accident (and many more on purpose). Aside from the occasional misstep or tripping over an object, he doesn’t fall. He is also better able to navigate stairs, however he is starting to realize that stairs are really hard for him regardless, so he asks to be carried up and down them more. He can land a two footed jump easily with the braces. Without the braces, he is able to do it ½ the time.  We have seen significant progress when he isn’t in the braces since starting to wear them last month. When asked what would be causing these issues, she said it could still be cerebral palsy, or something without a cause. I asked if his scans showed any anoxic brain injury and she said no. In mild cases of cerebral palsy however, it may not be seen on images.

      The good news is; Matt does not need to have immediate brain surgery. He will need to have it at some point during his childhood. The question becomes when. The doctor was on the fence about whether to operate at this point. We return in two months to reassess. If done earlier, she believes she will not have to open up the dura surrounding his brain and insert a patch (called a duraplasty). This is the riskiest part of the surgery because it opens him up to bleeding in the brain and meningitis. She would only have to remove an under piece of his skull and a part of his c1 vertebrae to relieve the pressure (called a posterior fossa craniotomy and c1 laminectomy).  The downside to doing it this way is that she may still have to go back in a few years later to perform the duraplasty.

     I was very glad Jay was able to go with me to the appointment. He and I have two different opinions on when the surgery should be performed.  He is very much, let’s wait and see what happens. I on the other hand, want to get it over with and hopefully never have to worry about it again. I needed the balance between our two points of view to be able to step back and take a breath. I am fully on board with taking the two months to process everything before returning to the neurosurgeon. As long as no other major symptoms arise (major headaches, issues with his eyes, loss of sensation, sleep apnea etc) I think waiting until he is closer to 3 or even 4 to perform the surgery is wise. I don’t want him to remember it, but I want him to be old enough to be able to explain what is happening in the moment. As a mother, when I see a problem with one of my kids, I want to fix it as soon as possible. But the surgery isn’t a cure. It won’t put his brain back in his skull where it belongs. It will only relieve the pressure and in turn hopefully relieve the symptoms; but even that isn’t a guarantee. While patients don’t typically get worse after surgery, they may not have any relief of their symptoms and may need one or more additional surgeries. It is so incredibly hard to know what the right thing to do is.

     Between now and his next appointment, I am going to try really hard not to excessively worry. I am going to try to avoid any more doctors’ appointments and try and fill our days with fun activities instead. Fall is in full swing and because Matt wasn’t walking last year and he was just diagnosed with the peanut allergy, we didn’t visit many pumpkin patches. My goal is to visit all of the ones in our area between now and Halloween. As a mother, I will no doubt worry. But these next two months I am going to take some guidance from the Serenity Prayer...

"God, grant me the serenity to accept the things I cannot change, 

Courage to change the things I can,

and the wisdom to know the difference."

...and change the things I can control and stop worrying so much about the things I cannot.