"7 words."
This was my answer when the pediatrician asked me at Lex's 2 year old check up how many words he knew. He then proceeded to tell me that he should have 200 words. I had no idea there was any issue, as Lex is a happy kid, and never really complained. So this prompted more questions and concerns. After a few consultations with experts, a conclusion was reached.
My son has a severe speech delay and is mildly autistic.
And I thank God every day that this conclusion was reached.
Because of the diagnosis, my son is eligible for special education services from the State. Being under the age of three at the time of diagnosis allowed him to receive 20 hours of speech therapy at daycare a week. And the State covered most of the cost. His diagnosis also granted him the opportunity to attend school the DAY he turned three years old. And not just a few hours a week. He takes the "big bus" with his friends from daycare and attends almost an entire day. He gets half a day of inclusion with "typical" children and other special needs kids in a preschool classroom and half a day of one on one speech and other types of therapy.
Where he lays on the spectrum, I'm not positive, as everything seems to improve as his speech improves. I am blessed to have a family that supports and accepts him, as well as many friends and loved ones who love him like I do. My parents and brother attend Autism fundraising events in NY whenever they can. My son's father and I volunteer for different events around us. I have a girlfriend with a son also on the Spectrum who always lets me know about anything new that she learns that her son responds well to. I have family members that also have children on the Spectrum who helped me through the initial diagnosis by answering all my questions and offering non-judgemental advice.
Life isn't always roses with a child on the Spectrum. Tantrums can come quickly, but I have learned how to deal with them (a lollipop can always staunch the crying). He doesn't do well in crowds. A visit to church on Palm Sunday turned into a disaster when a visiting priest didn't understand Lex's discomfort and chastised me for not being able to "control my son".
Pity angers me. My son is autistic. I can say this with no issue. Don't feel bad for me. I accept and embrace it. Don't treat him like a leper. He is a 4 year old boy who just wants to be a kid. While he may not be able to tell you exactly what you want to hear, he can show you. Although these days, the words are coming quicker and more often, which is amazing to see.
I have seen both the negative and positive sides of having a child diagnosed as on the Autism Spectrum.
On one hand, there have been people who have been afraid of this diagnosis, who feel bad for me, who tell me they are sorry, who pity me. To be honest, I feel bad for these people because they tend to shy away from inviting my son and I to their house or invite us to events. They are the ones missing out on Lex's infectious giggles and loving nature. They miss out on his quick bonding with people and his boundless energy. They miss out on his absolute love for all things "Thomas the Tank Engine" and his ability to tell you the names of over 50 trains. It saddens me to think about the friends I have lost because they are not aware of the broadness and intricacies of Autism. It angers me when I think about comments made to me that were meant to be supportive, but were just hurtful. I tried to not take it personally, but I failed. Miserably. I lost many friends who didn't know how to handle my son's diagnosis.
But on the other hand, I have other friends who have not let Lex's diagnosis get in the way of them getting to know him. One of my favorite things I've ever done with my son is taking him to a indoor waterpark resort with my girlfriend Megan and her son, Jack. I have NEVER seen my son get so excited to do something with someone other than me or his father, but "Waterpark Jack" was his best friend for those two days. And at the end of the trip, Jack melted my heart when he said "Lex is a good kid". Those five simple words mean more than he will ever know.
Society is becoming more aware of the abilities and disabilities of people on the Autism Spectrum. I applaud those businesses and organizations that recognize that Autism is a disability. One most forefront in my mind is the Disney Corporation. Before our trip to DisneyWorld this Christmas, I emailed the website asking if they would be able to do anything for my son at the parks, as he does not do well with waiting in lines patiently and quickly becomes frustrated and agitated. They replied by telling me to visit the Customer Assistance office in whatever park we went to first. I did this, and they were happy to offer me a Guest Assistance pass, which allowed us to wait a minimum amount of time on any ride that he wanted to go on, not just for that one day, but for our entire trip. This entitled my son the opportunity to actually enjoy his trip, not have it filled with frustration and angst at the hour long lines. We had a magical trip and my son still talks about wanting to go back on Splash Mountain at least once a week.
Who knows what the future will hold for my son or for Autism as a whole. All I can ask is for one thing. Let my kid be a kid. Don't let his diagnosis change how you look at him. If there is one thing I know for sure, and it is his favorite phrase, my kid loves his mom. And I love him. Autism and all.
3 comments:
I work with Autistic children on a daily basis. They always manage to brighten my day. Your piece is beautifully written! I'm glad Disney was able to help (although you hope they would be as they are centered around children) make his trip even more special!
My daughter had a speech delay attributed to recurrent ear infections and I remember the day I received her "welcome packet" from early intervention with a letter about "welcome to italy" or some such crap about how when you have a baby you don't expect them to have problems, blah blah blah. I remember having a moment where I wondered if she was on the Spectrum (she isn't, as far as we know) and how I would handle it. I have more friends than I can say who have children who fall somewhere on the Spectrum.
It sounds to me like your son is very lucky to have a mom who sees his disability in the light in which you see his. I hope that had one of my children been diagnosed similarly I would have been able to do the same.
Back a while, when I was struggling through infertility, people acted the same way toward me that you describe them acting toward your son. People just don't know how to behave around people who are different.
After my first miscarriage, I was told something that helped a bit. I think there is a shade of it in your story. I was told that some souls do not need to be born, just conceived in order to achieve their purpose. Those souls are sent to special women who carry them for a short time and then they are gone. I think the same could be said of special needs children. They are sent to special women (and men) to care for them in the way that they need to be cared for to achieve their purpose. I hope that that doesn't sound condescending because it's meant to be filled with the awe and respect I have for every mother who parents a child with special needs.
Well put Sis, he is great kid! And he is a genius, how do I know this???? Everytime he sees me, he pushes the dirt with his leg like a bull getting ready to charge, and jumps right on me. You are doing a great job as a mother, hopefully u will do an even better job as an aunt!!!
Post a Comment