Meet the Mom are special posts that I want to share with you. I have met so very many strong and inspiring mamas in my life, and now that I have become a mama myself I have an even greater respect for what it means to be a mom. These mamas deserve to be recognized for the amazing role they play in their children’s lives. They have stories that we all should hear. They have wisdom to share.
I am very excited to welcome you to my very first “Meet the Mom” post! You will have to bear with me, this is my first go at any sort of writing that could be very generously be called “journalism”. First up is my darling friend, Marcie! She has graciously agreed to be my first “interview” and share her story with us.
Marcie (35) is a full-time working mom, a soon to be college graduate (congratulations, beautiful!!). She is first a foremost mother to two incredibly sweet and amazing little girls, Paige (13) and Ella (9). She is engaged to her best friend and soulmate, Adam. Marcie and I became friends working the jewelry counter together several years ago. That is where I met her and her beautiful family. Marcie was always positive and smiling, no matter what was going on around her. She’s a real swing for the fences kind of girl, and I love that about her.
I have chosen to share Marcie’s story with you now for a very special reason. April is Autism Awareness month. And this month, and this cause is very near and dear to Marcie’s heart. This is because Marcie’s daughter, Paige, is Autistic. What better way to wrap up this month than to hear first hand about the journey than from the traveler?
We decided to do this Q&A style, so hold on to your hats because here we go!
Can you, in your own words, define what autism means? Autism is a lifetime developmental difficulty that often affects the way an individual communicates with, relates to and interacts with other people. It also affects the way they perceive the world around them. Individuals with autism often can’t make connections that other people can make quite easily. If someone were to smile at you, you would know almost automatically that they feel happy or friendly; when someone is hurt or angry with you, you can tell by their face or their voice. But for many people who have autism spectrum disorders it’s hard to tell what emotions look like and what another person is thinking.
What exactly is the autism “spectrum”? They began referring to Autism as an Autism Spectrum Disorder when it became clear that although many of the people on the “spectrum” experienced some of the same difficulties, there was a huge varying array of severity and symptoms. Some folks with Autism are considerably more high-functioning than others. It was also adjusted to include other disorders such as Asperger’s and Pervasive Developmental Disorder.
How did you learn that Paige was autistic? How old was she? Until about 1, Paige developed exactly as she should. Crawled on time, babbled & walked on time. But then the babbling slowed down and no words came. She wasn’t responding to her name and would not make eye contact, so her pediatrician suggested she may have a hearing problem. We put tubes in her ears & waited… No change. At nearly two years old, she was still non-verbal and always in her own world. I called the doctor and asked her what I should do. At this time, she suggested that it was time we saw a Developmental Pediatrician; we needed to consider that Paige may have Autism…. I remember feeling like I had been punched in the stomach. The only thing I knew about Autism is what I had seen in movies like “Rain Man”. I think I cried for a week. Thinking about how my precious baby may never live a “normal” life. When I finally brought her in, it did not take long to get her diagnosis. At age two and a half my baby was diagnosed as being Autistic.
What sort of challenges does autism present for Paige personally? When she was younger, there were a lot of challenges. She would barely eat anything at all, I know all parents complain about that but this was an actual health issue. She wasn’t potty-trained until she was 5. She was completely non-verbal until age 4. She would get so over-stimulated or frustrated that she would just throw herself on the floor & have meltdown. Other mothers would suggest that I punish her but you can’t punish a child for not knowing how to express her feelings…Making friends has been a huge challenge for her. Paige, to this day has still never been invited to a slumber party. She flaps her hands, shakes, and makes strange noises when she gets excited and sometimes other teenagers think she’s weird. She has no filter. What I mean by this is that she will say whatever is on her mind, inappropriate or not which continues to be a struggle. She doesn’t always understand when she has hurt someone else’s feelings and doesn’t really know how to show genuine sympathy or concern. A lot of her responses such as “thank-you”, “I’m ok, how are you?” “I’m sorry” and “excuse me” are learned responses meaning she says them because she knows she’s supposed to, NOT because she feels them.
Sometimes when a child is diagnosed with Autism, that is the only thing that people can see. As her mom, how do you see Paige? Despite all of the struggles she has faced, Paige has grown into an incredible young lady. I was told that she may never speak or be able to attend a regular public school and that she may never be able to live an independent life. How wrong they were! At age 13, she is a thriving 7th grader at Jackson Memorial Middle school where she has been on the honor roll for two straight years with all A’s. Her strongest subject is Science, she teaches me knew & interesting facts all the time. I laugh when people (and insurance companies) still classify Autism as a “learning disorder”. Children on the spectrum don’t have a problem with learning, they simply need to be taught differently. Paige is also an incredible artist. She draws mostly Anime and is able to capture facial expressions with such ease, you can tell what her characters are feeling and thinking just by looking at them. She is funny and kind and an amazing big sister. Most 13 year olds would not have time to play with their 9 year old sister but she makes time. My girls have a very special & beautiful bond. She is full of love for her family, her friends and her pets. As a mother who feared her baby would never even say “mama”, there is nothing in the world that can compare to hearing my Au-some child say “I love you, Mom”.
What have you learned about yourself in this time? That I am a ferocious mama bear. That I am strong and patient. I have purpose and that purpose is to raise two more strong women.
I’m sure that in the beginning it was very intimidating and uncertain. Did you have any support? Any resources that were beneficial? The Cleveland Clinic Center for Autism is amazing. They helped train tutors for Paige in a technique called A.B.A (Applied Behavior Analysis) that breaks tasks down into super small steps. After that, Paige went to The Idea House for tutoring which is the most incredible school for children on the spectrum. The school is ran by an inspiring woman named Angi Shumate who I call “The Autism Whisperer” because of the unbelievable way she can reach these kids. My ex-husband (Paige’s Dad) and his family have helped financially because these services are NOT cheap, they are also very supportive and loving as is my family. Paige’s step-dad, my fiancé Adam, has made a huge impact as well. I owe her trying new foods to him!
What is something that you wish someone would have told you in the beginning? This is NOT the end of the world, it’s just the beginning of a new one. You were given this child for a reason.
Any advice for other moms out there who might have just discovered that their child has autism? Breathe. You can do this. Education is key. You MUST start intervention NOW, the sooner the better. Don’t put it off looking for some miracle cure, there isn’t one. Your child needs education, support, understanding and love. Most of all, they need YOU to be their voice & their advocate. Contact an intervention specialist in your area. Contact your child’s school & inform them of the diagnoses so you can get your child on an I.E.P (Individualized Education Plan). Breathe.
What steps should a parent or caregiver take if they suspect that their child or loved one may have autism?
- Request an Autism evaluation for your child – Professionals that can diagnose Autism include Developmental Pediatricians, Child Psychologists, Child Psychiatrists, and Neurologists.
- Educate yourself– Find out everything there is to know about autism. You can find information in books and articles in your local library, bookstore and online.
- Find out what your child needs– Depending on the type of autism diagnosis your child receives he/she may have many or few special needs. Carefully look at your child’s behaviors and discuss them with your doctor to determine the best course of action. For instance, does your child have sensory problems? Speech delays? Social deficits?
How can individuals educate themselves about autism and support the autism community? I am actively involved in the Stark County Branch of Autism Speaks. Leslie Bloom is the area director & her e-mail address is :
You can also visit their extremely informational website at:
Angi Shumate & the folks at the Idea House do offer some advocacy programs and can help with I.E.Ps and general advice & support. Visit their website at:
http://www.ideahouseeducationalservices.com/
Finally, how would you describe your journey of being a mom to an autistic child? To say that our journey has been a difficult one, is truly an understatement but it has also been educational, inspiring, uplifting and wonderful. Having a child on the spectrum has taught me so much about myself, showed me strength I never knew I had, and helped me grow in to a far more patient, understanding and giving individual. I firmly believe that being her mother has indeed, made me a better person. People often ask me if I think there will ever be a cure for Autism…. My answer is simple. Autism is not a disease that needs to be cured, it is a difference, a unique way of thinking, feeling and processing the world around you. And like all things that make people different from one another Autism needs to be accepted, understood and embraced.
In knowing Marcie, and her lovely family, I have become a more aware mother. So often we tend to dismiss things like autism because it isn’t something that we are connected to. It hasn’t touched our lives. Well, these people have touched mine. And I hope they have had a chance to touch yours too, or at least have made you a more aware person.
Again, thank you Marcie for being a part of this!
Squish and Squeaker 