Dos and Don'ts After an Autism Diagnosis

My kids (left to right): Tate, Titus, Emily, Isaac, Sydney (above), Regan, Levi, Bailey

Over ten years ago, my son Tate was diagnosed with autism and my life was forever changed. I am regularly asked for advice from parents of children newly diagnosed with autism. The diagnosis can be intimidating and parents are sometimes unsure of where to turn or what to do. I don’t have all the answers. But I do remember the panic, fears, denial, and the distress I felt when my own son was diagnosed. I know now so many things I did not know then. I can honestly say that the life we are living is not scary at all. And so I tried to put into words some of the things that I thought might help a parent of a child newly diagnosed with autism.  

Don’t let the autism diagnosis intimidate you. Do give yourself some time. Do some reading. Ask some questions. Do not jump to conclusions. Do not let all the doctors, therapists, educators, or the price tag that comes with autism intimidate you. One day you will look back on this and wish you could reassure yourself because you’ve got this.

Don’t let the autism diagnosis cause you to feel sorry for yourself. Do count your blessings. In reality there are things so much worse than an autism diagnosis. Look around you. There are people dealing with truly tragic situations. Now, roll up your sleeves. Your role as your child’s advocate is going to keep you busy. Things are going to be okay.

Tate at Preschool

Don’t let the autism diagnosis cause you to forget. Do remember that sweet baby you fell in love with! He/she is still that child! Don’t become so caught up in the present or so fearful of the future that you forget what’s important. Don’t forget that you are your child’s parent first and his teacher/therapist second.    

Don’t let the autism diagnosis leave you feeling self-conscious or paranoid. Do understand there is no guilt to be had or blame to be placed. There is nothing you could have done differently to prevent your child’s autism. I will not lie. If your child melts down, or engages in stereotypic behaviors in public, there will be stares. There will possibly be rude questions and awkward silences. There will probably be people who think your child needs discipline when, in fact, discipline would be pointless. Don’t let people who are uneducated about autism cause you to feel humiliated. Know this: It does get easier with time.

Don’t let the autism diagnosis isolate you. Do reach out for help. It is true that some people unfamiliar with autism might stop coming around after the diagnosis. They do not understand the behaviors, the meltdowns, the necessity for routine, and the jargon we speak. If you find yourself in need of understanding, find a parent who has already walked a few miles in your shoes. Online groups can be helpful. There are most-likely support groups and other parents in your situation within driving distance. Look to public schools and recreational activities in your area, as well as religious programs. There is a lot of camaraderie in the autism community. Reach out. We help each other. 

Tate's poor motor skills and refusal of foods
often meant someone needed to help him.
Older siblings were always willing to help.

Don’t let the autism diagnosis rob your other children. Do explain autism to your children and what it means to your family. A child with autism will likely need more care than his siblings. Reassure your other children often and show them how important they are to you. When possible try to include all your children in the therapies and activities your child with autism needs. There may be many things your other children want or need that your child with autism cannot participate in. Sometimes your other children will have to have your undivided attention too. Your world cannot ALWAYS revolve around the child with autism.

Don’t let the autism diagnosis steal your joy. Do maintain a sense of humor. You have a choice. You can dwell on all the what-ifs and the should-have-beens and become bitter or you can accept what is and look for the joyous moments around you. Having a child with autism will not suck all the fun out of life. A sense of humor can help you tremendously. The fact is, autism or not, kids are fun and kids say and do really funny things. Enjoy those things. Don’t let autism silence the laughter in your home.

Don’t let the autism diagnosis squash your hope. Do be willing to dream a little differently. Before the autism diagnosis you were possibly envisioning driver’s education, college, a wedding, and grandchildren. Don’t stop dreaming dreams for your child. Those things still might happen. If, as your child ages, it becomes clear some of those things will not be happening, then modify your expectations. But stay motivated to help your child become the best that he can be.

Don’t let the autism diagnosis cause you to doubt your faith. Do take advantage of the things autism can teach you. God does not “zap” families with autism because they’ve been “bad.” Many parents of children with autism report they have become much more patient and understanding people since their child’s autism diagnosis.

Don’t let the autism diagnosis pull you into frivolous debates. Do use your time and energy wisely. You have got important things to be doing. Focus your attention, time and energy on your children and their needs. Don’t get caught up in the autism community debates that lead to nowhere. Whether or not you choose to use the word “autistic” or the phrase “person with autism” is no one’s business but your own. Your right to disclose your child’s diagnosis to everyone in your community or keep it in house is also your own. These kinds of disputes are not helpful and only cause division in the autism community. Don’t get involved. Your time is much too valuable.

I can imagine what you are feeling. I have been there. Autism is like a thief in many ways. It has been known to rob children of their childhoods. It can sometimes steal the joy and hope from parents. Autism has drained a lot of bank accounts and has ruined marriages. But it does not have to be that way. Don’t let an autism diagnosis do those things to you.

If you liked this post you might also one of these: It's Not Such a Bad Life or: 15 Truths of Parenting Special Kids or: There is No One to Blame.

Sometimes Moms Like to Remember: Shopping Trips

It has occurred to me a few times lately upon seeing large families out doing their shopping, what I must have looked like when I took five, six or seven kids with me to a store.  There were curious stares and often comments like, “Are they all yours?” and “You certainly have your hands full.”  Coming from a fairly large family myself (I am one of six children), and having planned to have at least five or six children, our “crowd” just did not look that large to me.  They were spaced about two to three years apart and each baby was welcomed whole-heartedly. I really loved being surrounded by my kids. So sometimes when I see a young mother pushing a cart with a baby seat and a toddler in the cart and two or three (or more) children trailing along behind, I get a little nostalgic. Sometimes a mom likes to remember...

These days when I go to buy groceries, I do not have a shopping cart full of diapers, baby food, animal crackers, or jars of peanut butter or jelly.  I don’t have to make dozens of peanut butter and jelly sandwiches each week anymore. We used to go through a jar of grape jam every week.  And that reminds me: One of my favorite stories to tell is about a time when my second child was four or five years old.  It was a Thursday.  I know that because I always did my grocery shopping on Thursday mornings back then. We were at the grocery store and she loved to “help.” The truth is I probably needed her help because I was most likely VERY pregnant, making it hard to bend over, or pushing a cart with one hand and holding a baby with the other.  My babies never made it all the way through a shopping trip without wailing to be held and who can think straight with a hysterical baby right in front of their face?  Not me. So, I became very good at pushing a cart with one hand.  Back to that Thursday morning, so long ago… grape jam still came in glass jars and it was on the bottom shelf. My little helper followed my directions and picked up a jar of jam but dropped it on that very hard floor. The result was a purple, sticky mess with lots of glass pieces scattered around it. I found a clerk who made the customary announcement, “Cleanup on aisle five.” Soon, a young man with a broom and a mop came to the rescue.  I apologized profusely and he was very forgiving.  Fast forward to one week later.  My little darling again picked up a jar of jam, and that slippery jar ended up just like the one from the Thursday before. So, I found a clerk, heard the intercom call for a cleanup on aisle five, and we waited on the nice young man with the broom and the mop.  I was embarrassed and very apologetic as I had been the week before.  The man looked at the mess then looked at me. He spoke two sentences to me. He said, “Could you start coming in on Tuesdays?  That’s my day off.” It wasn’t long after that and jam started coming in plastic containers.  And now you know the reason for that! Ha. Sometimes a mother has to laugh off life's embarrassing little moments.

I have a lot of funny shopping stories.  Once, when we got to our shopping destination, I had a toddler fall out of the van. Head first.  I had an infant in a car seat balanced on my left hip and only one hand free and a split second to prevent my child from landing in the parking lot on her face.  I grabbed her by the ankle as she tumbled out and I jerked up.  And there I stood… with a baby seat on my left hip and a little girl (in a dress) dangling upside down from my right hand above a hot parking lot. THAT was a hard situation to resolve.  Sometimes a mom really does need more than two hands. 

Once Isaac was born, we almost never made it through a trip to any store without at least one person stopping us to ooh and aah over his beautiful eyes. Isaac has light blue eyes with a dark blue ring around the outside. Women often wanted to admire his eyes.  (They still do.) Around age three, Isaac had taken all of it he could handle. If a lady approached him he’d hide his face. If someone commented on his eyes, he would cry. Those poor ladies felt so badly for terrorizing a preschooler! I considered putting a paper bag over the kid’s head to hide those gorgeous eyes for a few years there. Sometimes mothers have to take drastic measures.

One of the stories I have told the most over the years is about the time my oldest son had a major meltdown in a fabric store. He was about four or five and at the time wanted to be a cowboy when he grew up. He had a gun belt, a toy rifle, a cowboy hat, and a spring horse he called, “Trigger.”  He loved to watch “Davy Crocket” and other movies in which the hero fought savages. We live near a town that is both the home of a state university and a small Indian University. The dramatic meltdown occurred when we were in a fabric store and a couple of men walked by. The men were very tan with brown eyes and long black hair, obviously Native American. My boy became hysterical, screaming, and scrambling to hide behind me.  He was shrieking, “Hide! They will kill us! They will get their bows and arrows and kill us!”  Luckily, the men found it amusing and were not offended as I offered them my excuses and regrets. Being a mother is sometimes very humbling. 

I normally blog about autism and this post would not be complete without memories of shopping with a young Tate. When Tate was around eighteen months old he had some very unusual behaviors. I did not yet know that these behaviors meant there was an autism diagnosis in his future. I only knew that he was unique and very sensitive to many things that he should have been able to tolerate and he was very aware of some things that he should not have known at all. It was one of the most curious things I had ever experienced but when we shopped we could NOT walk down the aisle that contained cookies or we paid for it. Keep in mind he was the sixth child. I had experienced tantrums in stores before. I had experienced scared children before. I had experienced children who were in pain before. If Tate caught sight of a package of cookies or if he HEARD the word cookie then he went from docile to inconsolable and frantic. There was no way around it.  I tried my best to do my shopping without Tate along for quite a while.  It is very hard to avoid all signs of cookies when you are in a grocery store.  Another thing Tate did in the stores began about age two.  He could “read” the product names by singing their jingles to me or quoting their commercial to me as we wandered through the store.  When we saw the Charmin toilet tissue he would say, “Less is more.”  When we walked past the cereals he rattled off jingles and advertising slogans one after another. I could hold up a tub of margarine and he could tell me if it was Blue Bonnet or Parkay. He was not exactly reading but he had all the products matched to their commercials. He could memorize commercials, picture books, songs, or movie dialogue after just hearing it a couple of times IF he was interested in it.  He still can but only IF it is something that appeals to him.  He cannot/will not memorize math facts quickly, the name of states, or anything useful that we would like for him to retain.  It is maddening the way his brain works! Mothers sometimes have to accept what they cannot change.

I have so many precious memories of my little ones. My kids continue to bring me joy as they grow but I will always miss them as babies too.  Things were often a blur when I had so many little ones all at once but I am able to remember many of the special things they did and I tried to write some of them down in their baby books too.  I have many more memories to share in the future. If you are a mother, jot down the embarrassing moments, the things that make you smile and the things that are unique about your child.  Someday you will be very glad you did it because sometimes Moms like to remember.