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.

The Mother I Was and The Mother I Have Become

Have you ever heard the Indian fable about the seven blind mice and the elephant? Each of the mice explored a different part of the elephant and they each came away with a different description of the elephant. There was a moral to the story is a bit different than the moral to the story I want to tell today but the idea is somewhat the same. Ironically I have seven children in my story. I play the part of the elephant. Flattering, I know. 

All seven of my children would identify me as their mother. However, I am really not the same person to each one of them at all. If they were each asked to think back to their youngest memories and on into their elementary school years, they would have very different descriptions of their mother, yet they all had the same one. And if they were asked to describe the roles I play in their lives today, being all different ages, the descriptions would be vastly different.

My oldest four kids have memories of an energetic young mom who played kickball in the front yard, had Nerf gun wars, and could sit crossed-legged on the floor to dress a Barbie or build with Legos. They will remember a rule about movies. We only had G rated movies, no others were allowed. Their mom always seemed to have a toddler on her hip, and a baby on the way. She was always sleep-deprived and often grouchy because of it. The oldest would tell you that mom was strict and wanted to be obeyed immediately.  A clean house was very important to their mom and she cooked six nights a week.

The younger kids would probably listen to those stories and wonder just where their brothers and sisters had lived back then. These kids have never seen their mom kick a playground ball across the yard and run bases, shoot a Nerf gun, or sit cross-legged on the floor. The younger kids know an older mom who has issues with arthritis and moves pretty slow. They will remember a lot of nights when supper came from a can, a box, or a drive-thru window. And they will remember being able to watch a few PG rated movies while they were still in grade school. (Scandalous, I know.) Having an older mom is not the worst thing that could happen to a kid though. The younger kids will definitely remember a more patient mom who did not become stressed when the house was not clean or the kids did not obey the first time. Sure, I am the same person but… not really.

To two of my children I was a tutor and helped them with many of their assignments while the other kids will have little memory at all of mom sitting with them to do homework. It was not necessary. They managed quite well without help. Some of the kids loved to read and loved to be read to. Those children will recall lying in mom’s bed while she laughed hysterically at what Junie B Jones had just done. One of the boys was passionate about dinosaurs and he will remember that we spent a whole lot of time discussing those great beasts and trying to pronounce their names correctly. One of the girls was/is passionate about cows and tractors and we have spent many hours pouring over fun facts about farming and sitting at the cattle auction just for her pleasure.

The oldest children and the youngest two will remember a mom who volunteered in their classrooms in the primary grades and was often at the classroom parties. The children in the middle will not have those memories. The girls will remember a lot more play dates than the boys will as they played so quietly and did not require me to repair anything at the end of the day. The boys could definitely holler “discrimination” about this.

Five of the kids played baseball or softball in the summers when they were young and will have a picture in their mind of a mom in a lawn chair at practices, games, and tournaments. Two of the children will never associate their mother with a ball field at all. The oldest children will remember their mother having chickens that they had to help feed but not the younger ones. The older children will remember their mom taking them to swimming lessons but the younger children will remember a mom that taught them to swim in the pool we built in the backyard. Two of these kids might remember their mother with a joystick in her hand trying to learn to play video games. The rest of the children would say their mother had probably never held a joystick in her life. A couple of the children would remember a day their mother brought home eight different brands of hotdogs so they could have a blind taste test to settle a very important debate. Only one of the kids will have a memory of getting a pony on their birthday. That girl’s mom really came through for her!

All seven children will have some very similar memories. They will all be able to hear my voice in their mind, singing from the rocking chair. They will all remember their mom as their first Bible class teacher. They will all remember a mom who was crazy in love with their daddy.

I gave all seven children a good childhood but they did not all have the same childhood and I am learning to be okay with that. Not all my children had the same opportunity nor will they have all the same memories and has to be okay. I cannot recreate the older children’s childhood for the younger children, nor can I turn back the clock to make sure the older kids get every experience the younger children have now. Recently one of my oldest children returned home for a visit. He saw Lucky Charms in the pantry and did a double take. My rule for a lot of years was that I would not buy chocolate cereal or cereal containing marshmallows. He looked at me and said, “Mom. You’ve changed.” I said, “Yes. I have.”

I usually blog about autism or FAS but occasionally I like to talk about something else. If you liked this post then you might find the following to your liking as well. What Does A Good Mother Say?

birth order and siblings have made a difference!

Birth order plays an important part in the development of any child.  Tate being number six of seven was a blessing, for sure.  Not having a routine, is hard for people on the autism spectrum.  Without us even knowing it, Tate probably began therapy the day he was born.  Had Tate been my first, second, or even third child, his daily activities would have been set, nearly, in stone.  When I was a young mother of three, I had the kids’ mealtimes, naps, baths, and bedtimes regulated by the clock and done the same way almost every day.  Toys were organized in bins and labeled boxes and kept picked up when not being played with.  Books were on shelves. There were hooks for jackets with each child’s name above them.  By the time I had five children, there was just organized chaos.  My routine was gone.  I still hoped most of the toys were picked up by the time Daddy got home in the evenings and jackets were somewhere off the floor.  I hardly ever got a hot meal on the table in the summer because many evenings were spent at a ball field, watching an older sibling play ball.  If Tate had been born earlier in our lives, he would have become much more handicapped.  I did not know Tate had autism when he was an infant and the routines I had for my first few children would have been so hard to break for Tate as he needed to outgrow them.  Seeing how hard it has been for Tate to be flexible about the few routines we have had in his ten years, has made me realize how glad I am he didn’t have more routine in his life earlier. 

Of course, the one thing that has always been constant in our lives, no matter what, is worship times on Sundays and Bible class times on Wednesday evenings.  The only exception is illness.

Some of Tate’s best teachers and therapists are his brothers and sisters.  Tate came home as an infant, to the perfect environment for him.  It was behavioral therapy from day one.  There was always an older sibling touching him, holding him, playing with him, talking to him, and causing him to adapt and be flexible.  There were unpredictable noises and movements, door slams and lots of talking.  Tate had to share.  There was not much that was his alone.  I am certain, that without all the siblings, Tate would be so much more handicapped than he is now.  

Sometimes, when I cannot teach Tate something, one of his siblings is able to teach him.  I was still feeding Tate his cereal when he was three because he had not mastered the use of a spoon.  His oldest brother determined he was going to show Tate how to use a spoon and he did it quickly with ice chips.  Tate loved ice chips but I had never thought of teaching with ice.  Tate was much more motivated to get the ice chips in his mouth than anything else I had tried. 

I tend to “baby” Tate because I think of him as a six year old in a ten year old body.  Tate’s siblings often expect more of him than I do and it is good for him.  When I do a cooking project with Tate, he helps me cook.  However when Tate’s nineteen year old brother cooks with Tate, he only supervises while Tate actually does the cooking.  The same brother takes time to show Tate how to do many tasks.  He is gone to college right now and he is looking forward to being home this summer to help with the education of Tate.

Before Tate was diagnosed with autism, we had initiated the adoption of Sydney.  Some people thought we should back out of our adoption while others encouraged us to continue.  I am so glad we did not listen to the negative people around us.  Where would Sydney be?  AND… Where would Tate be?  Sydney has taught him so much.  She is younger but much more outgoing.  She challenges him daily to do things he would not be doing without her prodding him on.  She is loud, demanding, and bossy.  She is a good teacher!