Alex's Mom

 

Twenty-five years ago, just before Mother’s Day, I found out that I was going to be a mom. All I had ever wanted to be in life was a mom, probably because God had blessed me with such a wonderful mother, and I wanted to be loving and caring, just like her. At the time, I didn’t realize that this baby I was carrying would be my only child, and he would have autism. Truthfully, this was not what I had planned for my life because I had wanted to have more than one child, and I wish more than anything that Alex never had to struggle with autism. Nonetheless, God’s plans are always greater, and I know that He gave me Alex because Alex was exactly the child I needed. On this Mother’s Day when children express their gratitude for all their mothers have done for them, I am thankful for all Alex has done for me.

Before I had Alex, I saw myself as fearful, avoiding difficult situations whenever possible.

Because of Alex, I have had to become bolder, making sure that he gets everything he needs.

Before I had Alex, I had kind and compassionate people in my life.

Because of Alex, I have even more kind and compassionate people in my life whom I never would have met, had Alex not had autism.

Before I had Alex, I thought I was a pretty good judge of character.

Because of Alex, I am able to see the purest hearts: those who see Alex’s goodness, are drawn toward him, and reach out to him in kindness.

Before I had Alex, I enjoyed the peace and solitude of praying alone before I fell asleep every night.

Because of Alex, I know there is nothing better than to listen to the earnest bedtime prayers of a child whose faith and hope in God are complete.

Before I had Alex, I wanted to write about something meaningful.

Because of Alex, I have someone meaningful to write about.

Before I had Alex, I was impatient and disliked having to wait for anything.

Because of Alex, I have learned to be more patient, have tried to look forward with anticipation instead of frustration, and have learned Alex’s motto: “Wait and see.”

Before I had Alex, I loved my husband, Ed.

Because of Alex, our love for each other has grown even stronger as we have shared struggles and triumphs, working together to make the best life possible for our beloved son.

Before I had Alex, I was thankful to have loving and supportive parents as a child.

Because of Alex, I am very grateful to still have my parents close at hand because I have needed their faith, love, and support even more as an adult raising my own child.

Before I had Alex, I had faith in God.

Because of Alex, my faith has been tested mightily, and I trust God more than I ever thought I could.

Before I had Alex, I was happy.

Because of Alex, I know true joy.

Shortly after we found out that Alex had autism, Ed commented that Alex would be a little boy longer because he would need us to do things for him longer than other children, who could be independent sooner. Whenever I am tying his shoes or cutting his meat or zipping his jacket because autism has impaired his fine motor skills and medication makes his hands shaky, I wonder when he will be able to do these tasks by himself. As he towers over me in his tall young man’s body, he grins and cooperates, knowing that as his mom, I will take care of his needs until he can do them on his own. In the meantime, I’m also his personal assistant who coordinates his support team, the home pharmacist who oversees his medications, the trivia buff who plays Jeopardy with him every weekday afternoon, his personal chef who prepares gluten-free and dairy-free food for him, and his laundress who makes sure all his clothes are clean. The other day, he informed me––perhaps because he knew this proclamation would please me––that I was also his best friend. How richly God has blessed me by making me Alex’s mom!

“So give your father and mother joy! May she who gave you birth be happy.” Proverbs 23:25

Yes, I Am an Autism Mom

 

Of my various roles in life, none is more important to me than being an autism mom.  More specifically, being Alex’s mom takes precedence over everything in my life. After more than twenty years of being an autism mom, imagine my surprise to discover this week that the term “autism mom” apparently offends some people.

In her Huffington Post essay published this week, “Why I Call Myself an ‘Autism Mom,’” Shawna Wingert  explains that she, too, recently discovered that the term “autism mom” strongly offends some people. Although I wasn’t sure whom she was referencing, once I read scathing comments in response to her essay, I found the critics—adults who say they have autism and some who simply criticize everything parents with autism do and say.

Truly, I admire that Shawna Wingert earnestly tries to understand the point of view of those who criticize her for calling herself an autism mom, and she beautifully defends using that title. She explains, “I never want anyone to assume that I somehow think my son’s autism is about me.” Perhaps because I’ve been an autism mom longer than she has, I don’t feel the need to be as cordial to those who want to criticize autism moms. In fact, I want to defend her and all the other autism moms from those who would dare question our intentions and motives.

As she also notes, the phrase “soccer mom” commonly exists in our society, and no one seems upset by that terminology. Moreover, university bookstores stock t-shirts and sweatshirts to sell to students’ parents emblazoned with the name of their college followed by “Mom” or “Dad.” For most parents, our lives become entwined with our children’s, as do our identities. Hence, we become soccer moms, dance moms, Valpo moms, etc. We are proud of our children and involved in their lives and activities, and we enthusiastically take on the titles that describe our children. Autism moms are no different. Instead of taking our kids to practices and games, we take them to speech, occupational, and behavioral therapies.

Like Shawna Wingert and many others, I am an autism mom and will continue to use that title unabashedly. However, autism is not who I am, nor is it who Alex is. Autism is simply what occupies our time, just as soccer does for soccer families.

However, those who bash the term “autism mom” (and made their presence known through harsh comments responding to her essay) accuse us to trying to claim autism as our own, something we “have” that really “belongs” to our kids. As Shawna Wingert asserts, “Autism is his, and his alone. I do, however, think that parenting a child with autism is mine.” Indeed, parenting a child with autism is something we own, something that binds autism parents to understand each other, allowing us to empathize because we share situations typical parents do not.

Furthermore, some of the nasty responses to this essay suggest that autism moms are self-centered and like those with Munchausen Syndrome By Proxy, as though we enjoy having children with a disability because we seek attention ourselves. Believe me, if I could erase autism from our life, I would do it in a heartbeat. Honestly, I hate how hard autism has made life for Alex, and we have focused our efforts on making his life better and easier in spite of the havoc autism has wreaked on his body and mind. By sharing our experiences in my blog, I sincerely want other autism parents to know that they are not alone, and I also want to increase autism awareness for those who don’t know firsthand what autism parents are dealing with on a daily basis. Furthermore, I always strive to show God’s grace in our lives; my intention is to glorify God, not myself.

As an autism mom, I am grateful God has given me the organization needed to keep track of the three dozen pills we administer to Alex every day and all his various appointments and paperwork. As an autism mom, I’m appreciative that I have the energy needed to help Alex with his daily living skills and that I am healthy and strong so that I can take care of him. As an autism mom, I am thankful for the wonderful team of specialists who help Ed and me develop Alex’s skills and make him the best he can be. As an autism mom, I am fortunate to have family and friends who have prayed for us, supporting us in the difficult times and celebrating with us in the good times. As an autism mom, I am blessed that God has always taken care of us, showing us the paths we should take and keeping Alex safe from danger. As an autism mom, I continue to pray for healing so that Alex and others like him no longer have to struggle with autism, and so that we no longer need the term “autism mom” because we will simply be grateful moms instead.

“I will comfort you there in Jerusalem as a mother comforts her child.” Isaiah 66:13

Autism Mom Guilt Bingo

 

This week, my sister-in-law posted a funny graphic on Facebook about mom guilt. Entitled “Mom Guilt Bingo,” it first appeared about a year ago on the blog Sweet T Makes Three. What makes this bingo game so amusing is that it is so true: we moms frequently second guess ourselves when raising our children and feel bad about our mistakes. Of course, some of the items included in the Mom Guilt Bingo are tongue-in-cheek, such as “High Fructose Corn Syrup in the House” and “Birthday Party Wasn’t Pinterest Worthy.” However, others squarely address those issues where we feel we’re not doing enough as our children’s mothers.

This week, I felt my own pangs of mom guilt as I eagerly prepared to start teaching another school year later this month. As I bought school supplies, revised syllabi for my classes, photocopied handouts, and decorated my classroom in anticipation of a new group of students, I felt that yearly pang of guilt about actually enjoying a job that takes me away from Alex every weekday morning. Mind you, he’s twenty-three years old, supervised by his beloved father while I’m away, and sleeping some of the time I’m at work, but I still worry that somehow my absence is detrimental to him.

While probably all mothers feel guilt from time to time, autism moms feel guilt that typical moms do not. We wonder whether we have done something wrong to cause our children’s autism—probably going back to the now debunked and completely ridiculous “refrigerator mother” theory that our supposed coldness impaired our children’s social skills. Moreover, we worry whether we are doing enough to make our children better. With those perceived shortcomings in mind, I offer my version of Autism Mom Guilt Bingo.

B is for Borrowed—Here are the squares I borrowed from the original Mom Guilt Bingo that also apply to autism moms:

Yelled

Incomplete Baby Book

Work Outside the Home

Hiding in the Bathroom

Used TV as a Babysitter



I is for Imagined causes of child’s autism—what we may have done during their early development, according to “research”:

Got sick during third trimester

Wore nail polish while pregnant

Passed along autoimmune tendencies

Too many ultrasounds during pregnancy

C-section


N is for Need to do this to keep child happy and mom sane:

Allowed child to rewind Disney videos over and over

Put child in GoodNights in the daytime when too big for diapers and pull-ups

Told child white lies

Let child slam doors and turn on and off lights in nightly routine

Engaged in routine of saying “Bye-bye” repeatedly during credits of television shows


G is for Gosh, I’m not proud of this:

Wanted to poke out eyes of people who stare at my kid

Jealous of parents who have typical kids

Made Rain Man jokes

Considered making T shirts that read: “I’m Autistic, What’s Your Excuse?”

Blamed, begged, and bargained with God



O is for Overloaded with toxins unknowingly:

Cooked in aluminum and nonstick pans

Built deck with (arsenic) treated lumber

Followed (thimerosal-containing) vaccine schedule faithfully

Gave Tylenol after shots

Child chewed on his flame-retardant pajamas



No one said that motherhood would be an easy job, and autism adds a whole new dimension of struggles to raising a child. Being human, we moms make mistakes, often unintentionally, and we pray that our shortcomings will not harm our children. Thankfully, we can rely upon God’s forgiveness when we fall short, and our kids are more resilient than we think they are. I’m especially blessed that Alex never holds a grudge; when I tell him I’m sorry, he readily accepts my apology and moves forward. (Occasionally when he’s OCD, he will remind me, “Mommy made a mistake in 1996,” but usually he doesn’t hold too much against me.) Without a doubt, I am the one who holds me accountable for my mistakes, and guilt ensues. However, I need to remember that if God and Alex can forgive me, then I need to forgive myself and let go of the guilt. Oh, and one of these days, I will finish Alex’s baby book, maybe someday after I retire from my job.

“You forgave the guilt of Your people––yes, You covered all their sins.” Psalm 85:2

Reunion

 

When Alex was first diagnosed with autism, I desperately began searching for information to help him. Along with reading countless articles and books, I spent a great deal of time online, trying to find the most up-to-date research. In addition, I wanted to communicate with other parents who were dealing with the same things we were, hoping that we could share ideas. Thanks to the Internet, people can easily find all kinds of support groups that allow them to connect with others who share their concerns and interests. The first group I joined online was a fairly large autism group with members from all around the world. While I met some very nice and supportive parents in that group, a great deal of arguing and differences of opinion, sometimes known as “flame wars,” led a group of us to break away and start another group.

The second group was specifically for parents of children with hyperlexia, a relatively rare condition where children learn to read before the age of five or six. Most of our kids had begun reading at age three, and many of us used those reading skills to help our children with their speech delays. In addition, most of our kids were younger than those whose parents were in the autism group, so we were dealing with similar developmental issues. From that group, I bonded with a few special moms, and I still keep in contact with them and have always been grateful for their friendship, support, and empathy.

After a few years, a small group from the hyperlexia group formed another sub-group of parents who were doing biomedical interventions with our kids. As we put our kids on gluten-free and casein-free diets to address their food allergies and sensitivities, along with vitamins and nutritional supplements, we wanted to compare notes and share research. Not all parents want to pursue biomedical methods, and we respected those who had chosen not to use those approaches with their kids, taking our conversations elsewhere. I learned a great deal from both groups and appreciated the camaraderie that these smart and dedicated moms offered.

As Alex grew older, I was busier working with him and coordinating his therapies, which meant I had less time for the online support groups. For a while, I “lurked,” reading other people’s comments but rarely commenting myself, and eventually I simply no longer participated at all. Over time, most of us stopped chatting with each other online, busy with our kids and more confident in our abilities to parent these special kids without the support of others who were in the same boat.

Recently, I noticed an email with a familiar designation in my inbox and was surprised yet pleased to hear from one of the members of our small biomedical group. This group had probably not been active for more than five years, and she was curious as to how everyone was doing. Over the next few days, nearly everyone in the group responded with updates about how they and their kids—actually teenagers and young adults since so much time has passed—are doing. Some posted current pictures: their cute little boys I remembered from years ago have now matured into tall and handsome young men. As much as their sons had changed, these moms with their distinct voices had not changed much at all, and the familiarity of their personalities was comforting as I remembered many of our conversations from the past and how we had seen each other through those early, uncertain years.

Over the next several days, my inbox continued to fill with emails from this group, and I found myself feeling overwhelmed by the conversations. Perhaps I should explain that I’m not the type of person who goes to high school reunions. For those who enjoy reminiscing, I think that’s great, but I personally have no desire to bond with acquaintances from many years ago because life has taken me far from those past experiences. One of the topics the group discussed this week as I lurked was the question of  “What would you tell your younger self?” For some, this evoked wistfulness in choices they wish they had made; for others, this gave them a sense of wisdom from what they’ve learned from experience. While I didn’t respond, I suppose that I would have to say that I wouldn’t tell my younger self anything because I believe that everything we go through teaches us something we must learn. Perhaps I would share with my younger self the wise quote that Alex often tells me: “Wait and see.”

While a few of the online support group seem to be continuing their catching up on news and reminiscing, some of us are standing on the fringes, waiting until the reunion is over or until it’s polite to leave. Others have already left, explaining the obligations that keep them from staying any longer. In a few weeks, probably all of us will lose touch once again, maybe to be reunited a few years down the line when someone feels nostalgic and wonders how everyone is doing.

As I have mentioned in a previous blog entry, Alex still says his childhood prayer of “Now I lay me down to sleep,” followed by a list of people whom he asks God to bless every night. This list has increased over time as people who are important to him have entered his life, such as his beloved therapists. About a week ago, out of the blue, he added three names at the end of his “God bless” list. Although I recognized these boys’ names from many years ago, I asked Alex who they were. He smiled and told me that they were in his preschool class. I’m not sure why he suddenly decided to include these three boys, who are now young men, in his prayers, but I’m touched by the sweetness of the gesture. This was not a one-time addition, either, as Alex has continued to name them every night in his blessings list. When I asked Alex how old those three boys are now, he immediately answered, “Twenty-two,” knowing that they are the same age as he is. I wonder how those boys are doing, what they look like as young men, and what a reunion of that special needs preschool class would be like. Mostly, I hope they feel the prayers of their former classmate Alex, who still feels connected to them, even after seventeen years. God bless Alan, David, and Joshua, and God bless Alex, who prays for them all.

“Yet the time will come when the Lord will gather them together like handpicked grain. One by one he will gather them…” Isaiah 27:12

Why Autism Moms Act the Way They Do

This week, Laura Shumaker, who, like me, is the mom of an adult son with autism, published a blog article entitled “Why Autism Moms Act the Way They Do.” [To read this article, click here.] She described crying spontaneously, joining book clubs but never attending, being socially awkward, and bristling when people compliment her or minimize her situation. While I appreciate her candor in sharing her feelings, I found that as an autism mom I don’t share any of those experiences. A common saying about people with autism is that if you have met one person with autism, you have met one person with autism. Perhaps the same could be said for their moms: if you have met one autism mom, you have met one autism mom. On the other hand, I have found that the autism moms whom I have met primarily through online support groups or through introduction by mutual friends seem to share many of the same qualities I have developed as an autism mom. While I know my experience may be different than others, here is my version of “Why Autism Moms Act the Way They Do,” or more accurately, why this autism mom acts the way I do.

1. Guilt is a big motivator for me. I’m always thinking of what I should have done, what I didn’t do, what I should be doing, and whether I’m doing what I should be doing. I’m often my own worst enemy wondering whether Alex’s autism is somehow my fault or whether I could have done something to make the obstacles he faces easier. My mom, who knows me better than anyone and loves me more than anyone, constantly tells me to get off my case, meaning that I need to stop feeling guilty for what I’ve done or not done. However that same guilt makes me constantly seek ways to make Alex better not just to help him but maybe to atone for anything I think I’ve done wrong along the way.

2. Worry is a constant nagging feeling for me. Along with feeling guilt, I spend a lot of time fretting about Alex’s behavior, health, and future. Do I need to be stricter with him and hold him to higher expectations? Do I need to cut him some slack and be more patient with his issues? Should I take him to the doctor, or should I wait and see if symptoms improve on their own with time? What do I need to do to prepare him for life? What will happen to him after I’m dead and gone (hopefully after living a long and productive life as his mother)? These feelings of uncertainty haunt me often.

3. People who complain constantly about their typical children annoy me. When parents of “normal” children whine about their kids not doing their homework or having messy rooms or being lazy, frankly I want to shake them. Do they realize how lucky they are to be dealing with rather minor issues? Certainly, I can understand their frustration and wanting their children to be the best that they can be, but I would be thrilled if my biggest concern were Alex’s messy room. When parents gripe about their kids, I simply bite my tongue and say nothing. I suppose that having a special needs child helps put things into proper perspective.

4. Research is my favorite pastime. Thanks to the Internet, I have access to all kinds of medical studies and data, as well as an opportunity to compare notes with other autism parents around the world. Many of the things I’ve learned through research have been beneficial to Alex, and I’ve also been able to share what I’ve learned with other parents who are dealing with similar issues. Through my reading of various medical publications, I have learned terminology that allows me to communicate effectively with Alex’s doctors. His current doctor seems to be pleased, for example, when I mentioned gamma linolenic acid as an anti-inflammatory essential fatty acid after he suggested evening primrose oil for Alex. When I ask questions or make comments that include medical jargon, he enthusiastically nods his head and says, “Exactly!” that makes me think he enjoys our conversations almost as much as I do. I’m thankful that he seems to appreciate the research I’ve done over the years and is always willing to discuss ideas with me to ease my worries and guilt.

While I can only speak for myself, I suspect that I’m not the only autism mom who exhibits these characteristics. Moreover, I also suspect that some of these qualities are common to all moms. A few weeks ago, I enjoyed a milkshake moms’ night out with two of my close friends, one of whom is the working mother of an infant and the other who is a stay-at-home mother of two young children. Even though our kids are at very different levels of development and our balance of career and family are different, we find more commonality than difference. All three of us share a devotion to our children that surpasses anything in life. We worry about them, feel guilty about things we shouldn’t as we question our choices, find whiny parents annoying, and search the Internet and books for guidance in raising our kids. Motherhood is always challenging; autism just adds a few unique challenges. However, through the years, dealing with obstacles has developed my faith in ways I could never have predicted as I continue to learn to choose faith over fear, easing guilt, worries, frustration, and the intense need to know why things happen. While I constantly pray for Alex’s healing, I am thankful for the faith that sustains me as well as the reassurance that in the end everything will be all right.

“Let us think of ways to motivate one another to acts of love and good works.” Hebrews 10:24