Sunday, 08 April 2012
Mari Nosal my new mentor, of sorts, allowed me to most graciously post this article which talks about graduation and her autistic son, since my twin autistic sons are now almost 16 this may be reflected in my life soon as well. This article was posted with her permission:
Graduation season is upon us. Many parents, special needs teens and young adults will feel stress and anxiety as they transition into the next step to independence. Whether this involves entering the adult world of employment, going off to college, or starting to live independently. This is a scary time for all families–but even more so for families that have childrenwith special needs.
I have written a story below which includes the challenges that my family has endured from my son’s childhood to young adulthood. I have included comments regarding my fears while attempting to jettison him out into college life and onto the road to independence. Living with a child that has Asperger’s or any diagnosis is not easy. My goal in writing our story is to let parents know that they are not alone. Our family has, and is, walking that path that many others struggle with today. I am here to tell you that the challenges are worth it. It is not all darkness and gloom. Your children will make it with a little help from their family, friends, teachers, and the community. If you are a reader who has a child graduating from high school or college, allow me to extend my congratulations to you.
A Letter To My Young Adult Son:
My son, you are now an adult. 23 years ago, you entered this world one month early. You made your entrance into this world with a loud wail that no one could ignore. You were an awesome baby, sleeping through the night at the ripe old age of seven weeks old. Your first year was fraught with constant infections. Fortunately these would respond to antibiotics. Although you were ill a lot, you managed to have a constant smile upon your face. You sang your way through ear infections, strep, and other maladies baby babble style.
You were extremely alert. People would remark on the fact that your expressions did not resemble that of an infant. It was noted by many that you seemed to have an elder’s wisdom in your eyes.
I recall your first word. You were standing in your crib at the age of 10 months smiling, with your arms in the air saying “uppy,uppy”. We were so excited to hear the clarity in your first word. Many other words would soon follow. By the age of 2 years, you would talk in full grammatically correct sentences.
You shocked us after toilet training experiences with your brother who is 22 months your senior. We thought he would go to college in diapers. You on the other hand went in the bathroom at age two of your own accord, pulled the tape off your disposable diaper and used the toilet independently.By the age of three, you were reading letters of cereal boxes. At age four you were reading and sounding out words. Your favorite game at age four was checkers! Embarrassing, as it was, you could actually beat me at that game. Your father and I thought you were a prodigy! We would soon realize that although you were bright, issues were present that would need to be addressed. You would get frustrated when other four year olds did not understand the concept of checkers.
Upon picking you up at the age of four from preschool, I was met by your teacher. Apparently, you had problems cutting with scissors. The teacher remarked how impressed she was with your inventive persistence. Rather than ask for help, she found you with a piece of construction paper hanging half-way off the table, weighed down with a pencil sharpener. You figured out that weighing down the paper would free up your hands so you could manipulate the scissors with two hands instead of one. The teacher recommended testing by a local occupational therapist. I sat in the hall and could hear your comments in the testing room. The therapist had you stack blocks. You not only stacked twelve blocks in a row, but color coded those using only green blocks. The therapist asked you if you would like to move on to another test. You response to the therapist at the ripe old age of four, “oh no, I want to stack the blocks again instead.” I doubled over in laughter out in the hall. I admired your strong will. I did not know at the time that the strong will you possessed would get you through some challenging times.The occupational therapist diagnosed you as having a weak grip, low upper body strength, and fine motor skill delays. She recommended activities for us to do at home to help you hone your skills. We played scatch ball since pulling the ball off of the Velcro paddle increased your grip. We pulled out the old shape sorter that you outgrew at an early age. The intent was to improve your hand-eye coordination. I blew bubbles and you popped them as another hand-eye coordination activity. I was told to practice the rule that if you could not manage a task on your own, to stand back and let you struggle a bit. It pained me to hear your pleas of help when you wanted to climb the jungle gym, or use your arms to hoist your body up on a low tree branch. I wanted to swoop you up and accomplish the task for you. I knew you would not master the skill if I did so however. Stand back I did, and with practice you persevered and experienced success. With each attempt you got stronger and more adept. We attempted to perceive you and your brother as separate individuals with separate talents and characteristics. Your brother played soccer, which you had no interest in. Group competitive sports were difficult for you.
That was when we decided to let you join a bowling league. The league turned out to be a great choice, for it challenged your motor skill issues. Bowling was a great first sport at age eight, because it matched your personality perfectly. You were within a team but actually only competed against yourself. You amazed us with your fortitude and growth during your six year bowling league stint. The little boy, who couldn’t candlepin bowling at age eight with one hand, became the preteen who was bowling triple 115 scores! You struggled until third grade to coordinate the pincer grip and tie your shoes. We bought you Velcro sneakers until you were ready. You know what? You learned how to tie! Merely on your own schedule, not ours. At this point in life, you were diagnosed with A.D.D. Your father and I attempted to cheer both you and your brother on equally in all your endeavors. That was difficult. Learning disabilities can prove challenging and necessitate investing more energy into the child with challenges than the sibling who does not have any. There was so much guilt. When we were cheering you on and helping you with your challenges we worried that we were ignoring your brother. When we supported your brother, and cheered him on, we felt as though we might be ignoring you. It is a tough balancing act supporting both children and making sure their needs are both being met. Your brother reminded me of this while driving in the car alone. He said, “Mom, do you realize that you and dad talk about my brother alot? Can we talk about something else for a change? My response to your brother was, “I am so sorry. Sometimes mom and dad worry about your brother’s future. We know that you will be OK. But that is no excuse; we love you both and are proud of the talents and wonderful character that you both possess. Son, do me a favor please. If I start babbling about your brother, will you please remind me so I stop?” Your brother was satisfied with this answer and I kept my promise.
This reminded me of the delicate tightrope of uncertainty and guilt that parents with both learning disabled and non-learning disabled children grapple with everyday. Middle school would prove to open up a Pandora’s box of new challenges. In elementary school, your strong memory and verbal skills had proved sufficient for the rote learning that took place. The demands of algebra and higher math would prove difficult for you. I attempted to convince educators that you were skipping steps in math calculations due to processing issues. They felt that you merely had A.D.D. and were lazy.We must be forgiving as not much was known about Asperger’s syndrome at this point and your expressive verbal skills hid your deficits with receptive language from most individuals.Never look back; only forward. I would advocate for you on this issue until it was finally recognized in high school. Bullying issues increased in middle school as the peer pressure increased. You were considered “quirky,” yet “sweet, and shy.” As difficult as it was, I heeded the therapist’s advice. I was to be a coach and observer when it came to bullying. If the kids were not drawing blood and the issues were not incessant I was to stand in the background and use my judgment on this issue. I wanted to protect you always. Unfortunately, as the therapist pointed out, I must guide you in how to deal with people on your own as you entered your teen years. I shed some tears for you but you did learn to to self advocate. You continued playing drums in the band as you entered your high school years. This proved to be a positive choice. You see, the band created a group for you to belong to. You were bullied for the last time in ninth grade. Another freshman was challenging you and a senior from the band stepped in and stuck up for you. The bully, who was a freshman like you, took off. Band was included in your I.E.P. as important. Band was where you had a chance to socialize with others.
When I finally got new testing done for you at the high school, they were so helpful and it was refreshing to have a group of educators finally listen. You would now be diagnosed with Asperger’s syndrome, as well as A.D.D. You stuck with the high school band through your high school career, and we were so proud of your musical progression. We bragged about both you and your brother to anyone that would listen. Upon graduation we decided to have you go to a two year college and live at home. We felt that transitioning into adulthood and independence was best done in baby steps. By not pushing you, we felt as though it would give you a chance to work towards success instead of failure, thus giving you the incentive to keep growing. You graduated from community college with much improved grades. You than entered a local four year college as a junior. The first semester was spent living at home and driving with your new driver’s license. You attempted the drivers exam three times but never gave up and finally did it! Second semester we decided to have you live in the dorm. It was hard to let you out from under our watchful eye but we knew we had to continue helping you achieve your goals on the road to independence. It was too easy at home for you to isolate yourself from people. You were only 45 minutes away and close enough for us to visit. At first you were allowed to come home every weekend. Gradually we spaced out home visits to once a month. We would come and take you out to dinner once a week but then take you back to your dorm. We also purchased a web cam and set up times to chat with you from your dorm room so you were not too homesick.
Not too long ago, you acquired your bachelor’s degree. You are now back home, holding a full time job after a couple of failed attempts at employment in the past. Son, as you start working with your job counselor to get more training so you will not be underemployed, and as you use the college degree that you worked so hard to earn, I leave you with one comment. You have surpassed all of society’s expectations for you. You have met and conquered many challenges. I know that you will continue to do so, and will succeed in all your future endeavors as you have in the past. Please know that your mom and dad love you very much. We are so proud of you and wouldn’t have wanted you to be any different than you are. You inspire us, teach us, humble us, and make us proud. Go forth into the world, my son, and fly like an eagle. Look out world, here comes my youngest son!