by Lisa Morgan
There are those who live and walk among us, drawing daily from a deep well of courage that
many of us will never have to tap. The demands, sacrifices and challenges they face on a moment by
moment basis, go unrecognized by most. There are regular prejudices and judgments levied against
them by others who pass by in ignorance and arrogance. Yet these people carry on, finding joy and
purpose in aiding the progress of another who may or may not even have the capacity to thank them
directly. These gentle giants are the mothers of children diagnosed with autism. Their numbers are
many; much higher than you would venture to guess. And their numbers are rising quickly.
Based on the latest statistics listed by the Autism Society, one in every 88 children is diagnosed
with autism, a complex developmental disability that typically appears during the first three years of
life, and affects a person’s ability to communicate and interact with others. It is a “spectrum disorder”
that affects individuals differently and to varying degrees. There is no known single cause of autism,
a disorder that is prevalent in almost 1 in every 54 boys in the United States. It is the fastest-growing
developmental disability in the country with a staggering 1,148% growth rate.
I wanted to pay tribute to some of the most courageous mothers I know in honor of Mother’s
Day. I wanted to write something beautiful, eloquent and moving. But I could not write anything as
powerful as the simple testimony of each of these women loving their children deeply, in word and
deed every day, on a level that is not demanded of other mothers. Their courageous, fighting spirits are
brilliantly displayed, as they simply tell the truth of their experience, each echoing the joy and pain of it,
finding gratitude in hard places.
Lisa Jimenez and Her J-Walkers: “It’s about 6 o’clock in the morning and Aidan comes
jumping in my bed. He’s asking for breakfast and wants to know what’s happening for the day. Since
Aidan needs medication to get through a normal day as most know it, I drag myself out of bed and get
started on the routine. We have four young boys. Troy is 10 years old, Aidan & Evan are 8 years old,
and Lukas is 6 years old. That in itself is a lot to take on. However, Troy and Aidan are on the autism
spectrum.
Troy was diagnosed at age 4½, right as he entered regular education kindergarten. Being an
educator myself, and after sending him to a year of preschool with other kids, why wouldn’t he take the
same route as others did? But Troy had issues. He knew things but had difficulty expressing them. Troy
got anxious easily and, to soothe himself, would flap his hands quickly an inch in front of his eyes. He
almost always played near other kids but never knew how to play with them. As a parent, it was painful
to watch. Why couldn’t my first born be just like all the other kids? Why was I chosen to go through
this? What was I supposed to do now?
The twins were born six weeks early and in the NICU for almost a month after that. We were
happy to add fraternal boys to our family. But our journey was far from over. 2½ years later, we found
out that the oldest twin, Aidan, was autistic as well. Aidan seemed locked away in his own world and
didn’t know how to get out. He was unable to communicate, except to repeat what we said to him.
It was a guessing game to find out how to meet his basic needs. Aidan was happier playing alone or
finding a wheel of a car and watching it spin for hours. He started special education preschool when he
turned 3 years old. As a parent, I began to blame myself. Why did my boys have to go through this kind
of life? Are they always going to struggle? What did I do wrong?
This is what God dealt me. And I chose to accept it and figure out how to raise my boys the
best way possible. We have been blessed with wonderful supportive family and friends throughout this
journey. Believe me, there are days that I want to give up or run away. But I would never be able to.
The boys need me. With every year of school the issues change a bit. But Troy gets help outside the
classroom at his school to help him catch up both academically and socially. Aidan works really hard in
his Special Day Class and is making huge progress this year. I don’t expect it to ever get easy. But we
celebrate our little victories and appreciate all that we have.
Early detection is important, but having a strong support system in place is just as important.
Every year in April, we (me, my husband, our boys and our extended family and friends) walk for Autism
Speaks at the Rose Bowl in Pasadena. Our team, the ‘Jay Walkers’, has about 30 members that help
raise awareness and donations for autism research. Knowing that we aren’t alone helps. There are
many therapies and various organizations that can help autistic kids. I have given advice to friends who
think they might have a child on the autism spectrum. By starting with a medical doctor for a diagnosis,
you can then find others who can help you. Although I spend most of my waking hours doing something
for the boys in one way or another, I wouldn’t change places with anyone else. These boys are my
responsibility. They depend on me, and I need them just as much.”
Jill Orr, Parent and Teacher: “As another Mother’s Day approaches, I am again envious of
the toddlers dressed in starched matching outfits, waiting in the brunch line, completely calm. I tried
that once. However, as it turns out, my child did not like starch or lines or brunch for that matter. My
son has autism. I was never in denial of my son’s disability. And yes, I’m going to say “disability”. If
that causes you to flinch and it’s not PC, then pop on over to my house during ANY transition time, and
I bet you will be “ok” with the label. My son is now almost 12, and guess what? He is still autistic. After
thousands of dollars in therapy and childhood memories that we cannot reclaim, I’m still baffled by why
I got to have the child I can’t teach?
You see, I am a teacher. I am a teacher for the neuro-typical child ranging in ages from 8 weeks
to 18 years. I have a few degrees and certificates that support just that. I have taught all ages in this
country and overseas. So when the doctor finally said, ‘Your son has autism’, I thought, ‘Great! Now I
know how to get him the help he needs!’ ‘Not so fast’, said fate. Turns out, autism is very different for
every child.
Of course I went through the different stages of grief… NOT!!!! Nope. When you have a child
you need to rescue, you just don’t have time for the nervous breakdown you deserve. I read about the
people who have autism and are leading productive lives. I have amazing friends. I also have another
child (my eldest) who has the patience of a saint. I go to yoga and I drink wine. I have an amazing man
in my life who loves both of my children and the dog. So that helps with the anxiety, the strange looks
from people, the calls from the principal’s office and the constant comment, “Wow, he doesn’t look
autistic.”
What does autism look like? What does it look like to you? Does it look like one in every 88 kids? It just
may be that toddler in a starched outfit, waiting patiently in line.
I am at the end of teaching second grade for the 2012-2013 school year in Nevada. Since April is
Autism Awareness Month, I gave up all of my prep periods to teach the student body about autism; yep,
kids 4-14 this year. I received approval for the students to wear blue (the color for autism awareness)
and to donate one dollar per student to Grant A Gift Autism Foundation. As I look out over that sea of
blue, I accept that my purpose is far greater than to teach my son; it’s to teach you. Please become the
society that accepts people for their differences. When I am gone, remember to be kind to each other.
If you see someone lost or out of sorts or who ‘looks autistic’, ask if you can help. You will probably
never meet me in a brunch line with well-behaved children, but I am here, waiting on the front lines. If
you ever need an advocate, I can certainly point you in the right direction, as long as your mantra is…
“People with disabilities are different…not less.”
Linda and Christopher: “Christopher is now 11. On the autism spectrum, he is severely
autistic. We were living in Texas when, at around 2 years old, he began losing all of his speech and
language skills. He wouldn’t look at his image in the mirror and wouldn’t respond to his name anymore.
I thought at first that maybe he had gone deaf. The doctor checked him out and said his hearing was
fine, told me to be patient and that he’d come around. Everyone, including my own family, kept telling
me I was overreacting. Even his pediatrician told me to calm down, and that it was ‘nothing’. I told
them, ‘No, something’s wrong!’ I was on the computer all the time, reading things that scared me to
death. Years ago, we had to fight family and doctors to get a diagnosis.
The first diagnosis we were given was PDDNOS/Pervasive Development Disorder Not Otherwise
Specified. That was pretty much the medical term for ‘looks like autism but we don’t want to call it that
yet.’ Christopher wasn’t diagnosed with autism until 2 years later, after all kinds of tests. Still, I didn’t
know if he’d talk again or be able to do normal things. We couldn’t take him anywhere. Restaurants
would cause him to melt down; between the people and the smells, it was too much stimulus. We
didn’t go to the mall or the grocery store because he would have a serious fit, screaming and throwing
himself on the ground, hitting his head… it was extremely severe. It was an uphill battle getting the
diagnosis, and then to get help. Texas schools didn’t seem to want to give anything away so they
wouldn’t tell you, ‘Hey, you can get this service for free.’ Luckily, California was different.
When I moved out here to the desert, I found a lot of support through the Coachella Valley
Autism Society and other special parents. There were so many services available that were free
or really discounted because of fundraisers like the Annual Concert for Autism (a benefit concert
to raise awareness and funds for autism charities) and Lumpy’s Annual Scramble for Autism Golf
Tournament. ABA therapy by B.E.S.T. Services, provided by the Inland Regional Center, was instrumental
in Christopher’s development. Now, due to the services available, the great teachers and the right
medication, Christopher can answer yes or no questions and has a very large vocabulary. He still can’t
hold a conversation with you, but he can answer questions, which is huge! If I ask him if he’s sick, he
can tell me yes. He’s reading now! I never thought he’d be able to read. I can take him pretty much
everywhere – to The Living Desert where he has a blast, to the grocery store where he helps me shop, to
a restaurant where he’ll sit and eat. I can even take him to a movie theater. There are so many things
that he’s doing now at age 11 -things that I never thought we’d ever be able to do.
It seems the medical field isn’t in denial anymore, patting moms and dads on the head and
telling us we are overreacting. They see it now. They are diagnosing much earlier. The Desert Sands
Unified School District has great teachers and programs in place. Still, you have to educate yourself and
fight for the programs your child needs when you walk in to get your individualized education plan.
One thing I’d want to tell other parents who are in the beginning stages of getting the diagnosis
and dealing with the feelings that follow, is this: In the beginning you feel like, ‘I had these dreams
for my kid and now they’re gone!’ As a parent of a child diagnosed with severe autism, I can
tell you, they’re not gone. You just have to make a new dream. That’s all. Yeah, Christopher’s
probably never going to play on the high school football team or get married. He will never be in a
regular class in school and will probably always be in special education classes. I will probably be taking
care of him until the day I die. There are so many things that he won’t be able to do, but he’s so much
better than he was. I had to learn that all the dreams that I had for him are new now. So many things
that people who don’t have a kid with special needs take for granted, like tying shoes, doing simple
math or going to a store without screaming, are things that you become so grateful for. All the ‘little’
milestones are major accomplishments. I’m grateful for everything now, and I don’t sweat the small
stuff like I used to. There are a lot of things that aren’t important any more, except for how lucky and
blessed I am to have such great kids. Christopher amazes me all the time!”
To find out more about autism visit the website http://www.cvasa.org/ or call 760-772-1000. They are
located at 77564 Country Club Dr., Building B, Suite 363, Palm Desert, CA 92255.
