So many people ask about our journey with Autism, and I wanted to share in hopes of helping someone know they are not alone. Sheila Mitchell-Green, Mother
Our journey started when a DayCare Director noticed that Julian did not engage with the rest of the kids. At home we noticed how he lined up all his toys, but being our first child we didn't know the signs. He also had limited words.
Get a diagnosis! It is important to get the ball rolling when it comes to services for your child, you must get a physician to diagnosis. Developmental Pediatricians are scarce, this may take months, so be patient but diligent.
The Importance Early Intervention
There is no time for denial! Get to work asap! Julian began services right out of his daycare environment. Early Intervention is key to finding breakthroughs to your child: how does he learn? what methods to use? At first they would come for an hour or so per week. Then he began 1/2 days at Early Intervention Service provider. For us keeping him in an environment that was not special needs was important, so he split his days so he could be exposed to both behaviors.
Philadelphia is lucky to have The Center for Autism. This is where we encountered major success with issues like sensory or tactile challenges. He would only eat very few things because of the touch or sensation, but they helped introduce methods to address these issues and broadened his tolerance for foods.
Talents and Interest
It is important to find the interest of your child and feed it as much as you can. Julian loved music and art almost from birth. He contributed to this mural at the Arts Garage in Mt Airy, drawing all the veggie like characters in the mural.
If there is music, Julian is going to dance, and dance and dance. Embrace your child's love of music and dancing. Take them everywhere so they can enjoy life and gain acceptance.
Navigating the Education System
Julian went into a regular kindergarten class in our local public school. This was good for him, but as he progressed to the first grade, we found him to be lost in the large class sizes. We lived very close to our school, Henry Houston Elementary, but there was no autism support there. We met with the Principal and worked on a plan to bring autism support to the school. After success with one class 2 more classes were formed so that he and other kids could stay there through 8th grade.
Despite all the efforts school can be challenging. There are good days and days where a simple flight of steps inflict terror on him; when he feels the need to scream or cry for no reason. You have to find the triggers and learn the right responses to the stimuli.
We were lucky to have had some good "TSS" Therapeutic Support Staff during his early years. It is important that you keep clear documentation from your Developmental Pediatrician and your schools because you will have to constantly fight for TSS hours for your child. Don't get discouraged and don't give up! You are your child's biggest advocate!
Take Advantage of Opportunities
Take advantage of opportunities and events for your child. There is much to gain from resources fairs, and the chance to share with other families.
CHOP host the Annual Huddle-Up with The Eagles for Autism.Kids and parents can do hands on with the players as well as games geared to their needs.
Embrace every chance to enhance life skills. Julian and I grocery shop every week together. I tell him what to get and he finds it on the shelf. He recognizes all of our brands now, and is responsible for stacking on the belt and help bagging.
I don't let him cook, but I certainty let him help. (grate the cheese for his favorite, mac & cheese etc.). He is learning cooking skills in one of his programs.
Transition to Young Adult
Julian is 19 years old now, and has progressed amazingly, but still has so far to go. He still does not use words as much as he should, and he obsesses over things sometimes. Math being one of them. He has ticks and quirks like washing his hands constantly, or wiping everything he touches. These come and go, but the key is to find the diversion tactics to help him function without these overtaking his life. It takes a village, not just people but resources, and you have to never stop finding opportunities to develop your child's skills. Here are some of the resources we are currently using:
LaSalle University- Speech and language
SJU- Kinney Center for Transitional Development- Life Skills
Settlement Music School- Music Therapy
Abington YMCA- Camp Magic
Our goal is to help Julian to become independent, and live a successful life on his own. We continue to throw everything we can at him, and he never ceases to amaze us at his ability to respond. As a parent I would advise anyone to fight everyday for services, resources, funding and opportunities for your child. Continue to vote for representation like Councilman Green, who will be advocates for special needs.
Events and Outings
People use to ask us "do you take him out?" We have always taken Julian out to restaurants, political events and shopping. You have to learn what the event will entail and whether his favorite foods will be served or available. Pick your restaurants, parties, weddings, political events ahead of time. You have to make sure you can accommodate your needs or bring them with you. If it is chicken wing night, go somewhere that serves chicken wings. Avoid the meltdowns. Also don't be afraid to announce to your wait staff that "this is your day for autism awareness, and need you to do the following", (bring the food out in this order, we need no ice in the water, etc.) They will appreciate it, believe me. Scoogi's on Bethlehem Pikes knows us and already knows how to do everything for Julian's preference.
Apologize when you can't attend. Sometimes it's just a bad day. No one really wants your child to meltdown at their wedding. We still have challenges. Although Julian loves shopping, he is challenged by escalators.