A New Understanding (Hopefully)Posted: August 19, 2012
It seems that there has been an increase in the curiosity surrounding Xander’s special needs lately. Friends, family members, even strangers seem to be asking more questions. They range from questions about his health, his daily life, his tantrums, as well as how I deal with all of it, especially because of my age. Being a parent of a typically developing kid is hard, regardless of how old you are. Throwing autism into that mix is like scattering the path of parenthood with hidden land mines. I had Xander when I was 20, and the week of my 23rd birthday, he was diagnosed with autism. Our life is not easy, but I am very well aware that it could be worse. At times, I feel closer to complete strangers who have autistic children then a lot of others in my life. There are things I can say to them without judgement, and with understanding. The sudden influx of questions had me thinking, if there were key points that I could relay to people about Xander’s and our life, what would they be? Would it help those closest to me to understand our life? That is what today is about.
I’m surviving, and it’s a hourly struggle. When people find out I stay at home their response is usually, “Oh! You’re so lucky!” I don’t stay home because I want to, I stay home because I have to. It is a 24 hour a day job to manage the many different types of doctor appointments, the full time ABA therapy, the meetings with state agencies and school districts. I have days where I don’t sit down, and food is forgotten. When I say I’m tired, it’s not the kind of tired that will be fixed from a good nights rest. It’s deep down, in my bones. I’m grateful for the help that I get from family and friends. Even if it’s as simple as coming to the house for a play date, or sending a book on autism with a special note. I may not say it, but I am so thankful, and “the little things” do not go unnoticed.
I mourn the loss of Xander’s childhood. Greiving is a normal part of the process to acceptance. The grief cycle is something usually only attributed to death, however, you go through the same cycle when your child is diagnosed with a developmental disability. While most 3 year olds were running around playing outside, Xander was cooped up in a room in intensive ABA therapy trying to learn how to speak and function on a developmental equivilent to his peers. We tried the buddy bunches, mommy and me gym and music classes. It caused physical pain to see my child struggle, to not be able to handle sitting so closely to other people, to cringe and scream at the echos in the gym. Having a second child was reiteration to how much he has missed.
I celebrate every acheivement, no matter how “small.” The first time Xander waved independently, I jumped up and down, picked him up and spun him in circles. The first time he said “mom,” I cried. When he holds eye contact, I do an internal happy dance. There is an overabundance of high fives, good jobs, and rewards in my house. It may look like he’s spoiled or we’re over the top, however if you knew the amount of hours put in, the struggles for him to be able to get to that point, you’d celebrate too.
It’s hard to hear about “normal” kids. My friends have started to have children and it is a joy to have other mothers around. However, it is hard to watch my friends gush over their chunky monkey cutie’s when my 5 year old doesn’t posess that same skill that makes them so happy. I’m jealous. I wish that there weren’t things a 2 1/2 year old could do that my 5 year old can’t. It doesn’t change my delight that these friends are excited, because I’m happy for them, too, but it stings. This is not limited to my friends’ children. Having a typically developing second child is difficult at times. It’s both a celebration and heartbreak when he does something that Xander did not, or still does not do. It’s a difficult balance, as it is not Gavin’s fault his brother is autistic. I still, and probably always will, struggle in this area.
It doesn’t matter how tough my skin is, when you say something mean about my child, it hurts. Wether it’s about his public meltdown or my parenting or how he’s still in diapers, your words hurt. I may hold it in, and act tough but it’s likely to plague my brain forever. I still remember the first time someone inserted their opinion about a public meltdown in Target. I remeber what the woman looked like, what clothes she was wearing, and her exact words. Regardless of other people’s ignorance to the situation, I take it personally.
I share a level of understanding and an unspoken bond with other autistic parents that only we understand. We celebrate loudly, and suffer quietly. We share little tidbits of our journey with each other. I look forward to Xander’s weekly social group, as it gives me time with these parents who understand our life. Some of their children are above Xander’s level, and some of them below. It doesn’t matter where our children land on the spectrum. There is a sense of comfort sitting in that room chatting about doctors, speech struggles and finding balance in our lives. I, at times, feel more connected and close with them than my dearest friends.
I will never feel as though I am doing enough. This is something that every mother I have talked to with a child on the spectrum agrees upon. There is never enough time. There is research, and new treatment ideas, and new educational services, changes to insurance. I joke that I have my PhD from the University of Google. It’s because every time I hear of any new research release, medication, therapy practice, I have to research every aspect to see if it applies to my son, in any way.
I understand how lucky I am. My journey through autism is different than most. I was lucky to work in the field before he was diagnosed. The irony of this is not lost on me. My company and co workers were and are entirely amazing and I consider them family. Xander started Early Intevention a month before his 3rd birthday. It is because of all of our hard work, our blood, sweat, and tears, that Xander is the child he is today. That he speaks. That he calls me mom. That he will tell you “no.” It’s a spectrum, and there are children above and below him in the severity of this disorder.
I love my family, and friends. I hope this gives them insight and understanding that I have maybe not shared in the past. I hope it makes me stay open towards them, and more accepting of their support, however they choose to give it. Most importantly, dear friends, keep asking questions. Wether it is about Xander, or autism in general, keep asking.