\"\"
Ask the Expert

The Faces of Autism: Meet Three Moms & Their Kids

By Apr 20, 2011 May 16th, 2012 56 Comments

This post may contain affiliate links which may give us a commission at no additional cost to you. As an Amazon Associate we earn from qualifying purchases.

In light of Autism Awareness Month, Jen, from Buried With Children, continues with her segment on “The Faces of Autism” today.  Be sure that you don’t miss Part 1 of this series, What Does Autism Look Like?, as well as Part 3, Understanding Autism in the Classroom.

Dealing with Autism day in and day out is something that I know nothing about.  So, in an effort to become more aware, I turned to three ladies who know Autism intimately.

Meet my friends: Sunday, who has two sons with Autism and blogs at Adventures in Extreme Parenthood, Jean, who has a son with Autism and blogs at Mommy to Two Boys, and Jessica, who has a teenage daughter with Autism and blogs at Four Plus an Angel

These wonder women and mothers where kind enough to answer my questions so that we might all learn a little bit more.

with autism

What is a typical day like for you?

Jean: We are up before the sun because Jaylen has never been a good sleeper, a common trait in kids on the spectrum. Both of my boys, Jaylen, who is 4 and Xavier, who is 2, have extreme amounts of energy that need to be released.

When it’s nice out, we head to local parks, playgrounds, or beaches, where Jaylen does well until it’s time to leave, when tantrums normally occur.

Favorite indoor activities include the children’s museum, where we only venture into the water play area. The rest of the museum remains untouched because Jaylen has an obsession with water and Xavi is either happy to go along with it, or he honestly hasn’t realized there is more to the museum.

The aquarium is also a hit unless there are school groups. Too many kids forces Jaylen into his anxious pose, both arms bent stiffly at the elbow and up high, with fists at the end and middle knuckles sticking out a little. He begins to stim (repetitive actions), flapping his arms and making a small moan sound every 2 seconds which may evolve into what sounds like whooping cough.

Jessica: A day in our life with Autism is not much different than a day in the life of any other household with a teenager. My daughter has some independent skills, but needs a great deal of assistance taking care of herself and staying on task. I get up with her, help her chose clothes that match, make sure everything is facing the right way, not inside out, fix her hair and make sure she follows her schedule for all of her self care tasks. She has check lists and schedules for pretty much every routine in her day.

Are your kids in school?

Sunday: The boys both attend a public schools in special classrooms designed specifically for children with Autism. Each classroom is limited to 5 students and often has 3 or more adults, in addition to the teacher, all aimed at keeping the students on task and engaged. Both boys also attend ESY (extended school year) programs, which means they go to school for 5 weeks during the summer months for half day sessions. ESY helps maintain a child’s progress on their IEP and prevents regression of skills.

Jessica: Ashlyn attends a typical high school and spends half of her day in general education and the other half of her day in special education. Generally, evenings are really difficult for her. The stress of school tends to overwhelm her and by evening she does not have many coping skills left.

autism children

Is there a part of the day that is more challenging than others?

Jean: Evenings are tough because Jaylen is tired, overstimulated, and can’t express his feelings well. He cries a lot and mostly replies “I don’t know” when we ask him why. If I put everything else aside and give him my attention, we can have amazing moments during these times. This past month, there were two occasions where he spontaneously told me he loved me and came in for a hug. I cherish those rare moments and never take them for granted.

By the time both boys are in bed, I feel defeated, emotionally and physically drained. Some nights I actually yell, “Freedom” Mel Gibson style from Braveheart. I want to blog, work on my home business, or read, but usually find myself watching bad TV with a cup of tea or glass of wine.

Jessica: I spend nights juggling my younger children, trying to prevent meltdowns from Ashlyn while also helping her through homework, making sure her schedule is set for the next day and generally smoothing over whatever may be making her upset at the moment.

Ashlyn does not have the skills the rest of us do to process her day and react to life’s ups and downs appropriately. There are bad days when we are all walking on pins and needles because you never really know what might upset her next, and then there are good days when she seems to tolerate change well and we all can enjoy each other so much more.

Tell us what is one of your biggest challenges in raising a child(ren) with Autism.

Sunday: I have found the most difficult aspects of raising children with Autism is in dealing with society at large and always feeling on guard to the looks, comments, and opinions of others who are not educated about what Autism is and what it is not. This is why the month of April as Autism Awareness Month is such a big deal to many of us.

I also struggle with the toileting needs of my boys. Both are still in diapers (at ages 8 and 6) and my many attempts to potty train have been met with varying degrees of failure. Noah has an especially difficult time due to his diagnosis of encopresis (or stool withholding). I hold out hope that someday my boys may be fully toilet trained, but for now it is not something I am willing to sacrifice my sanity (or theirs) over. Just like many of the milestones they have reached, they do it in their time and not mine. The important thing is they reached it.

Jessica: My biggest struggle is the never ending nature of Autism. It is hard to believe we have been dredging through this for 15 years.

We have gone through battling schools for appropriate placement, finding the right doctors and the right treatment approaches, searching for ways to calm her aggression and anxiety, looking for peers to help her feel included, the list goes on and on. And it is never over. Autism is never finished or fixed.

Now Ashlyn is heading towards adulthood and I can honestly say I have no idea what her future will hold. I hope that some day she can have a job, be self-sufficient and contribute to society in a way that makes her happy.

Right now, I can’t imagine her doing things like driving a car or maintaining her temper in difficult situations without assistance, so I don’t know what her life as an adult will look like. She might be able to get an A in Math, but she can’t control her temper when we run out of mayonnaise or remember to turn off the stove.

Those are the things that worry me. The enormity of how Autism affects each and every moment of her life and ours can be exhausting. When I think of the years behind us and the years ahead, I wish for a break. Just a day, or a few hours, without the stress of Autism on my child. I wish she could walk through life without everything being so difficult, but there is no magic formula that can make that happen.

Ashlyn was diagnosed at a time when Autism was much less prevalent. She walked extremely late, she did not talk until she was four and all of her test scores indicated a grim future.

The life I thought was ahead of her was not remotely what it is today.

By the time she began kindergarten, she had a great vocabulary and began attending some general education classes.  Ashlyn has continued to prove everyone wrong ever since. Every year we meet to go over her progress and each and every year, she surpasses her goals. Her perseverance and determination never cease to amaze me.

autism in children

What do you want people to know about Autism?

Sunday: I feel like the biggest lesson Autism has taught me is that life is not about “me”. Its about our future, our children, and not making the mistake of trying to shape them to fit into the world, but rather to shape the world to embrace and accept them as a meaningful part of society.

I feel this is best accomplished through education and opening the minds and hearts of those around us to not just to the challenges of Autism…but to its potential.

Jean: I started my blog to spread awareness. Not awareness of how prevalent Autism has become, but to show people what Autism really is. Autism is hard and all we want is to be respected and understood. No matter how great we are as parents, how strict we are, or how many workshops we attend, we will not have children who appear neurotypical.

Having a child with an “invisible disability” is even harder when you have to deal with harsh looks, rude comments, and people muttering under their breath. If my guy is not stimming or in his awkward anxious pose, you may not realize he has Autism and just mistake him for a brat. Nothing makes me more comfortable than going to an Autism only event. You can feel the collective sigh of relief from every parent there as they look around and know their child is accepted. Our kids can have a tantrum, take off articles of clothes, yell at everyone, stim, and no one even bats an eye. It would change lives if life was the same when we left those events. So please, don’t judge the next time you see a stressed parent with an out of control or screaming child, you have no idea what they are going through. It might even be me and my little guys.

One last note, if you have concerns about your child’s development, do something now. No harm will be done by looking into whether or not your child needs extra help. But ignoring it can be extremely costly. My son’s early intervention took him from a baby who was entirely in his own world to a high functioning boy with Autism. At Jaylen’s initial evaluation at 16 months, he failed almost every task they asked of him and my husband and I had many excuses. Our biggest excuse was that we used different language at home. After we headed home with a PDD-NOS (pervasive developmental disorder-not otherwise specified) diagnosis, the word Autism, and cheeks covered in horrible running mascara, I did a little research and it was so obvious. As a former teacher, I knew about Autism, but had ignored it in my own son, somewhat subconsciously. Every checklist I found on the Internet and in print was basically a detailed description of my little man. I finally accepted, yes, YES, my son has Autism.

About Francesca

Francesca has an extensive background in content marketing, public relations, and social outreach. She oversees all Operations at Sway Group, including our robust metrics capabilities. Prior to joining the online world, Francesca oversaw viticulture and oenology at various wineries in both California and Italy, and managed regulatory affairs and facility approvals at the biotech company, Genentech. Francesca has been featured on CBS Sacramento and Food Blogger Pro’s podcast. She has also hosted an AMA webinar and spoken at Social Media World.

56 Comments

  • Penelope says:

    I was recommended this web site by my cousin.
    I’m not sure whether this post is written by him as nobody else
    know such detailed about my problem. You’re wonderful! Thanks!

  • The tips is amazingly unique.

  • sharde says:

    thanks so much for posting this. im a nanny for three during the day, one of which, my 5 yo has autism. when i read this part “If my guy is not stimming or in his awkward anxious pose, you may not realize he has Autism and just mistake him for a brat.” I nearly cried my heart out. its so true. im sharing this with my boss tomorrow.

    • Jean says:

      Thank you Sharde. I struggled with how to put that into words and apparently I got it right! I am glad it moved you.

  • kirsten says:

    This is wonderful. It must be so difficult for mothers with young children who have autism – I can’t even imagine it! Thank you for sharing your stories!

  • Lynn says:

    Three of my favorite ladies all in one place…what an awesome format and forum. Even though I know them all, I learned something new from each of them.

  • Hurray!!!! These are some of my favorite people! Woo Hoo for you all, as you are some of the most amazing women I know in the blog-e-o-sphere!

  • Texan Mama says:

    Awesome post. Thanks for educating all of us!

    I will admit, I am one to sometimes look (I try not to stare tho!) but my looks are not one of “oh my god what is wrong with that child?” But more of, “We are all mothers, I may not have a child with autism but I know she is struggling. I’m going to say a quick prayer for her.”

    I’m sure it’s hard. No one wants to be different, yet we’re all encouraged to embrace our uniqueness. I have no children with disabilities and yet i have a very hard time explaining this concept to them. I can only imagine how hard it is for you three ladies.

    And this is the part where I feel weird… I dont’ want anyone to think I pity them or feel sorry for them. But where is the line crossed from feeling compassion for someone?

    All I’m trying to say is that my heart goes out to you. You all sound like very strong women and your children are lucky to have you as mommas!!

    • Jean says:

      Thanks for your comments Texan Mama. Great points. Sometimes I want to reach out to that mom, like you, but am worried too. Even thought I am a mom of a kid with Autism! You honestly never know who will be offended by what. I know moms who would get upset if someone tried to console or help, and I know moms who would welcome it. Oh, and compassion AND pity are OK with me. I pity myself and my son sometimes, so you can too.

  • What a great post. You ladies are heroes in my eyes…very inspiring!

  • Bonnie says:

    I wish more parents had that outlook about raising their children, not just the ones facing Autism. Great post.

  • Dani G says:

    I love you girls!!!

  • Marie Cole says:

    I don’t remember growing up with anyone who had Autsim and now it seems like alot of kids have it….Is it from the vaccines?

  • Thanks for the introduction! My daughter is an ABA Therapist and I am learning so much from everyone!

  • I’ve been following Jean of Mommy to Two Boys for a while now and really enjoy her blog!

  • What a wonderful, insightful post! Thank you for choosing to be an active participant in Autism Awareness Month. As a fellow (sister?) Autism Mom blogger who is cyber-friends with all three of these amazing women it is great to see then featured here!

  • Cheryl D. says:

    Wow! Thanks so much for raising awareness on autism! You’ve picked three awesome bloggers today!

  • camille says:

    I honestly salute moms with autistic kids. I love the result of the interview you really get an insight on how the day goes for both the child and the mom. for some countries such as Asia autism is something new, therefore lots of parents are battling with lack of activities for their autistic child. I hope they can all learn from these wonder moms.

    • Jean says:

      Thank you Camille! And you are right that it is so important for us moms of kids with Autism and with special needs to learn from each other.

  • Great post Jen – loved the questions and the peek into each of these ladies’ lives. Thank you to each of them for sharing!

    *****
    April is Autism Awareness Month. I’m dedicating my blog all month long to Autism.

  • Jean says:

    Thank you Jen and SITS for not only increasing awareness, but also understanding. The post and this week of Autism spotlights make me proud. It was an honor to be a part of this.

  • Madison says:

    This is a very well done post, thank you so much for your efforts in spreading awareness. As a parent of a 21 year old with Autism, so much has changed, I remember when my son was first diagnosed, autism was rarely ever mentioned anywhere and knowledge and education was hard to come by, I had to dig deep. I have so much identification with all three moms and I want to thank you all so much for sharing.

  • Kimberly says:

    Thank you for sharing!

  • Thanks Jen, this is great.

  • I love the ‘Faces of Autism’ idea to spread awareness! Beautifully done. I am a mom to two boys, one of whom is on the spectrum. I’m also the aunt of another boy on the spectrum. Every ‘autism mom’ faces challenges — some more acutely than others — but I’m proud to stand among them. I have met so many amazing families through my work in autism research and through my friends in the community. I am inspired every day.

  • S Club Mama says:

    Thank you ladies so much for sharing! My 3yo has autism and I just have goosebumps reading this. Especially that last portion about early intervention. It’s so easy to go into denial because your baby is perfect – and they are, they just may need some help. And you’re so right because it doesn’t HURT them to be tested. 🙂

    • Jean says:

      Thanks for your comment. Aren’t the feelings surrounding Autism so real and strong? I am not surprised it gave you goosebumps. I am glad you enjoyed the post!

  • OMG! Yummy says:

    What a great post – thank you all for sharing. I have a son with Asperger’s, not diagnosed until 6th grade. He is now 16 and doing great but your comment about this being an invisible disability is so insightful. One of the books I read about how to be an classroom aid for a child with Asperger’s said exactly that. Everyone thinks he is so smart (and he is) so why doesn’t he understand simple things like raising his hand before he speaks. Many times, he was punished by being thrown out of class. (which, by the way, wasn’t really a punishment for him – it was a relief).

    Anyhow, I admire and thank you all for writing about your experiences.

    • Jean says:

      Thanks for sharing your story. It truly is an invisible disability. Your son must have struggled so much before his diagnosis. As a former teacher, I can imagine how hard it was on you and him before you knew why he was behaving the way he was. And my son is the same way, he is so smart academically, but has little to no social and emotional skills.

    • OMG it has always amazed me to hear that there are people diagnosed with Aspergers as nearly teens, yet here I am with a ten year old daughter and an eight and a half year old son with all of those social problems and wondering if and how we can get assessments done for them. My daughter is extremely gifted verbally and my son is extraordinarily talented with visual spacial representations of things, but … Their behavior has manifested the profs to assign the diagnoses of mood disorders, in addition to anxiety, ADHD, and sensory processing disorder. I’m not sure where to go to rule out Aspergers, but there is always this nagging feeling….

  • Brynn says:

    Great post. I will be posting a link to this article on my blog’s Facebook page. I am spotlighting Autism Speaks as my Giving Back Spotlight this month. It is so important to bring awareness to everyone about these children that need our support and love.
    Thanks for helping this cause.

  • Kelly says:

    Thanks for sharing these stories!

  • Jessica says:

    Thanks so much for allowing me to share our story Jen. This turned out great!

    • Jean says:

      Jessica, such great points about the future and adulthood. Even though you talking about drudging through this for years does make my heart beat a little faster…

  • Jamie says:

    Thank you for sharing your stories. Autism touches so many lives.

  • Jennie B says:

    These are 3 of my favorite autism mamas. Sunday has helped me learn to laugh through it all, Jean has helped me feel less alone raising a young child with autism and Jessica is the greatest support both emotionally and in our growth as writers. Wonderful post today and will link up on Friday!

  • Ninisays says:

    Great stories, thanks for sharing and getting all these women together. I’m definitely learning.

  • Ashley says:

    Yay for some of my favorite bloggers all in the same posts! Love it!

  • My autistic niece is attending graduate school, working first on her Master’s in some sort of physics, then her PHd.

    • Jean says:

      Oh my goodness Karen! I don’t think you know how excited your comment made me. I just got goose bumps! Yay for your niece and yay for people with Autism having a future that is so promising. My guy will get there, I just know it!

    • I think i saw the Coffee Klatch had/has a support series for individuals on the autism spectrum who are going to or already attending college. You might want to look into that for her…

  • i love to read inspirational stories about how other families manage with Autism – gives me hope and also makes sure that I know I’m not alone 🙂

  • Ms. Blasé says:

    Thank you for featuring a post that show just how varied the spectrum of autism can be. Having two autistic cousins and an uncle who range from “low-functioning” to “high-functioning” has taught me over the years that this is not a one-size-fits-all syndrome. It is as amazingly diverse as the individuals themselves.

    • Jean says:

      Great point Ms. Blase. I am glad you pointed this out as a huge concept people don’t typically understand about Autism.

      • Jean, I know exactly what you mean by an invisible disability, and just how hard it is to parent amidst the stares and odd looks from others when our children are just being themselves & trying to cope with the wold around them the best they know how. I too find myself at the end of the day shouting “freedom!” OR crashing in exhaustion and trying to will my energizer bunny baby to sleep.

        Great great post you guys and thank you so much for doing this Jen!

  • Awesome stories. Thanks so much for sharing!
    Bernice

  • You’re right…the world has a lot to learn and understand about autism. When I was a fourth grade teacher, I encountered a handful of nine and ten year-olds on the spectrum. However, I’ve never really had a clear idea about what it means to have an older child with autism. Thank you for sharing your experiences so candidly.

  • Sunday says:

    I love the way the post turned out. Thank you Jen for bringing us all together to share our experiences.