By we I mean parents of special needs children. Before I had a special needs child myself, I didn’t have a clue of what it meant, and how easy I had it the first time around. I had had friends with special needs as a kid, but I had never met a special needs mom since I became a mom myself. Until I turned into one. And I entered the club that no one would choose to be part of. After I had my first son I had the luxury of being able to spend our days going to the park, visiting museums, exploring the city and playing. I wish I had enjoyed that time more than I did, because it all came to an end when his younger brother was diagnosed with ANSD (Auditory Neuropathy Spectrum Disorder, a very difficult to manage type of deafness), and our lives were turned upside down for good, for better or for worse. Because there is a better in this situation too.
The first thing that surprised me was the quantity. There are tons of children with special needs out there. In Illinois, according to the Census of 2010, 5% of school aged children have some kind of disability, ranging from ambulatory difficulties to learning difficulties. In plain language, from kids who need wheelchairs to move around and need medical help to those with diagnosis like ADHD (Attention Deficit and Hyperactivity Disorder) and ASD (Autism Spectrum Disorder). But with the rapid growth in the number of diagnosis in those last two disorders alone, that Census percentage may sky rocket by the next time they track it. Some are more obvious than others, but don’t asume that a child is not living with a special situation just because you cannot see it.
As much responsibility as any parent bears, parents of kids with special needs have even more responsibilities. The therapy hours, the school planning, keeping track of cochlear implants, hearing aids, glasses, or any other devices your kids need to use. I will never shake the feeling that, somehow, my deaf son needs a little bit more protection than his hearing brothers, that I can’t never take my eyes away from him.
The better that I mentioned before is the strength I have found both within myself and in other parents who share my daily struggles. And this post is dedicated to all of them. To the ones who get it.
These are the reasons why we are lion parents:
1. The fighting. Like normal parents, parents of children with special needs love, care and protect their brood. But we also have to roar while we defend our children’s rights. Fighting with schools, insurances, health providers, you name it. We have done it all. We turn into researchers, often knowing more about our kids conditions than the professionals who care for them, who have a tendency to disregard the parents’ point of view. There are as many ways to try to circumvent them as there are laws protecting the rights of people with special needs. And you have to invoke those laws time and again, and remind the system that you know that they exist. In a best case scenario, you have to turn into a lawyer. And sometimes, you just have to hire one.
2. The driving. If I had gotten paid for every single hour I have spent behind the wheel in the last three years, I would be loaded. Parents of special needs children have to turn into drivers, taking their kids from one therapy to another, to medical appointments, group therapies, schools… For the first few years you may be lucky and have all those therapies in the morning. But once they start school, they will take place in the afternoon and you have to take along any other children you have. In my case, that makes a total of three. In a sedan. You get the picture.
3. The therapies. Suddenly you are supposed to turn into a therapist yourself. The way this works is that a therapist, be it speech, occupational or any other kind works with your kid for an hour a week. The rest of the week you are expected to apply whatever you saw in that hour to help your child thrive. And no, I don’t think I am qualified to do it either.
4. The always difficult medical decisions. In some cases there are none, but in others they are hard to make. Do you give a kid with ADHD medication or not? How many interventions are too many? Is a cochlear implant worth the risk of the surgery? Is a second one really necessary? They are constant, and they evolve with time. There is always a new one to take. Which leads us to number…
5. The strain on the marriage. As stated above, there are all these decisions to be taken. And they need to be taken by two people, the parents, until the child is old enough to participate in his/her care. But no one said that the parents are going to always agree. Actually, they often don’t. At least not the parents in this house. Ideally, the most conservative approach is taken until parent A convinces parent B of the need to start a certain treatment, go to a different school or explore a new approach. In a perfect world this would be a peaceful process. In ours, with parents who are really exhausted, it involves fights and arguments. But, what doesn’t kill you makes you stronger, right?
6. The school. When you have children, you assume they are going to go to the neighborhood school or to the private school of your choice. But sometimes life has other plans. I was already thinking on how cute my two kids would look together in their uniforms when I had to accept the fact that, for the time being, they would have to go to different schools. Adjusting my expectations is the lesser of my problems here. Having two kids who get out of school at the exact same time in two different places is much more complicated to arrange than my feelings.
7. The constant threat of Children Services intervention. This is my personal pet peeve. If we miss two consecutive medical or therapy appointments at the hospital, both our pediatrician and Children Services are informed. I know this because our hospital screwed up once and forgot to enter in their own system a cancellation by their own audiologist. We received an unacceptably nasty letter warning us about their policy. They received a likewise nasty letter from us informing them of their incompetence. Also, if your child is bused from school and you fail to be home, they call Children Services. Failing may mean that you live in Chicago, and in a -20F January afternoon your door has frozen enough that you cannot get your key in. The bus is outside, and so is a friend of yours dropping off kid number 1. You are on the phone with the driver, explaining the situation to him, and asking him to leave your kid with said friend. You are even jumping on an icy table so he can see that you are actually inside. In this particular scenario, the rules said no. If I couldn’t open that freaking gate he would have to call in DCFS. I was already calling the fire department when it occurred to me to dose the lock with warm water. Luckily, it worked. But those were the longest five minutes of my life. And we couldn’t get a key on that gate for weeks.
7. The equipment. It may be minimal, as a pair of glasses, or involve complicated things like breathing machines and feeding tubes. In any case, it is expensive, often small, easy to lose and left in the hands of tiny people who couldn’t care less about losing it. Actually, sometimes they find it very amusing when their mom is going bananas looking for them.
8. The fear/the guilt. Parents of special needs kids have to face way more fears than other parents. Will my son child fit in? Will he be bullied? Will he do well in school? Will he need more interventions? Will he agree with the decisions I made when he grows up, or will he hate me for making them? These are some of mine, but you can get creative and imagine many, many more. As for the guilt, even knowing that in our case his deafness is genetic, I wonder every day if I should have quit my job, if we should have moved to a different city with better schools for the deaf, if any of my decisions made things worse. At the end of the day, I feel guilty because I hear, and he doesn’t. Even though he is much happier than I am. That is how irrational guilt is.
9. The stare. If you are part of my club, you know what I am talking about. You are in the park, and this mom is staring at your kid. When you realize, and look at her, she pouts and says “I’m sorry”. She is certainly well intentioned, but in that moment I would happily risk going to jail to hit her. Then I wonder who would drive my kids places, and I keep my hands to myself. And I politely tell her that there is nothing to be sorry about. I will rather take 40 questions from curious kids who want to know all about that green thing and those cables coming from my son’s head than getting “the stare”. The children’s curiosity is natural and welcome. The mom’s pity is not.
10. The cost. Most of the things I mentioned above are expensive. Even with the best medical insurance, there are still copays, and parking tickets from hospitals, and special insurances for equipment, and expensive equipment to be replaced, and therapies to pay for out of pocket because that therapist rocks but she doesn’t take insurance and CPS doesn’t provide even a 10% of the therapy your kid needs. Many parents have to quit their jobs, which greatly impacts their household’s economy. And we are lucky that equipment here tends to be covered by health insurance. In Spain replacements for cochlear implants are not covered. I can’t even imagine how hard it has to be to tell your kid that you cannot afford for them to hear.
As long as this list is, it is lacking the most important thing. I wouldn’t change a bit of my son even if I could. Because he is the most perfect four year old that I could think of. Because I have endless admiration for the way he has actively enjoyed life since the moment he was born. Because thanks to all these struggles we have faced together we have developed a very special bond. We get each other. All the time.
And now, I don’t want you to give me a virtual “stare”. I just want you to understand. And I want you to look at that mom you see every day at pick up, yes, the one with the special kid, and smile at her. Just a warm smile. She could use it.
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