The Sweet Is Never As Sweet Without The Sour

This marks week three of Divine In The Daily’s 5-week guest post series titled Special Mamas! Every Wednesday in May, we’re honoring real-life mamas who have big hearts and stand bold and courageous in their unique mothering roles.

Two weeks ago, Jennifer Camp, blogger at You Are My Girls and mother of three from Northern California, kicked off our series with a guest post titled When Mothers Cry Rescue.

Last week, Tamara, mother of seven, was honored with a family photo session and beautiful tribute from her husband and children in this post!

This week, we continue the series with a guest post from the mama of a five-year-old boy who has autism. I met her three years ago and have followed her closely online since. Being a speech-language pathologist, I greatly admire the authenticity and bravery she demonstrates as she faces daily joys and challenges of raising a son with autism. I invited this mama to guest post anonymously because I wanted to grant her complete freedom to open her heart and share her journey without fear.

This mama once held a blog that was converted to a simple Facebook page called MNAutismMom. Click “Like” if you would like to follow her journey. If you have questions or comments for this mama, you are more than welcome to place a comment at the end of this blog post.

IN THE BEGINNING

Before I had my first and only son, I imagined that a baby was just one more thing on my “to-do” list.

After the exhausting activity of labor, I started to devour my baby books like I was cramming for some sort of exam. I was freaking out. I realized I didn’t know how to change a diaper and didn’t have a clue about a baby’s feeding schedule. I was happy to be naïve up until the day he was born, but I was unprepared for the test on June 13, 2007.

Of course, raising a child is not a test, but a non-stop life journey that has completely altered my world which has been just as hard as it has been good. And now I sound like a cliché. But, that’s the thing. He is a hard child to raise. Life is hard at times. My life had its challenges before this little boy entered the picture, but nothing other than my teaching degree prepared me for a moderately, classic form of autism in my son. And my teaching degree only helped me see the signs of his autism…nothing more.

Unlike most sane people, I did worry about autism before he was born (though I am learning that might not be as unusual as I thought, especially amongst teachers). I remember discussing these concerns with my mother and my friends.

My son didn’t hit any of his milestones on time and by 12 months I was pretty much convinced, but didn’t want to utter the word “autism” to the doctors in case I was wrong, in case I was inserting ideas into their head wrongly, in case I would be written off.

By 22 months, I had a team of people that created a 12+ page document confirming my fears and my Google searches. I cried. I grieved for years and my husband threw up on the side of Highway 494 the day we were told the diagnosis.

Sometimes people want to know how I knew so early. They don’t understand how I got him a diagnosis so early in life, but it’s not that hard to see when your child makes limited eye contact, finds light more interesting than people and isn’t doing most of what a typical child would do.

It really wasn’t hard to see his autism, but the people who didn’t want to see it, didn’t. Every single relationship was damaged and is still in repair. No one says anything appropriate to a special needs parent. My skin, so thin, my emotions transparent. I couldn’t hide my feelings. It was all I could think about initially.

It took me years to figure out that most people will not be able to handle conversations about autism in general (especially when you are grieving and initially finding out). For example, a neighbor would tell me how “normal” his behaviors were and I wouldn’t know to respond. I would read potty training books and my dad would tell me how I was worrying unnecessarily and that I had to learn how to just enjoy my baby. And my relationship with my sister was ultimately one of the most strained because she was always my soft place to fall before my child was born. I eventually just stopped talking to her about him if I could, resorting to only telling her the progress – you know, the good stuff and even that somehow hurt me. Her response? Something about how one day he might get to live in a group home. Wow, thanks.

Just writing this down makes me tear up. There are no social guidelines for telling people about a child’s autism diagnosis. Maybe they are in their own shock and can’t recognize the pain of the parent’s. And that’s the thing, it’s my pain, not my child’s. He doesn’t know he has autism. The pain is all in me. I don’t expect the world to know what to say, how to react, but I had to learn that the hard way.

Sometimes it’s actually the people you don’t know that will be your soft place. The applied behavior analysts (ABA), speech, occupational and physical therapists will be the most supportive, loving and understanding people in your adult life. And no one tells you that all of those other people you thought you knew, will have no idea what to say or do. There will be no casseroles for the grieving mothers and fathers. There will be little said that is appropriate or comforting.

And then, one day, you forgive them. The anger flows over and you realize they didn’t know better.

You learn who to trust.

You learn who to confront and when.

You learn who to let go of completely and move on.

Because he is YOUR CHILD. The one you have been called to love and nurture.

Words do hurt, but the child that people can’t see has special needs, WILL show them over time who he is and is not. And you learn to stop defending your point of view because unfortunately you no longer have to. 

5-YEARS-OLD

In a month, my baby turns 6. This is the first birthday that isn’t making me cringe. The other birthdays were so painful. A reminder of all the milestones he couldn’t accomplish yet. All of the hard work we had left ahead. The fear of the future. What does it all mean?

And as he leaves 5 behind, it was the hardest year to date. I realized at some point, that when he was first diagnosed it was about me. Completely selfish…my life and yes, his too. Autism = language and social deficits, distinct interest in very particular things that override the ability to work on and learn other skills.

When he was little he would hang on me. There was no independence. He recently stopped being fed by adults. He would fall apart, scream, and cry if he wasn’t getting what he wanted. Realize this isn’t a spoiled child, but a child that can’t regulate feelings, can’t communicate. I babied him and it wasn’t until the last 6 months that he started doing more and more on his own. Just this week, I observed him urinate without an adult standing over him and he’s even going without some prompting! It’s been 6 years of having a very dependent child. The years of not being able to make dinner or turn my back on him have just recently become past memories. Speech has finally crept in. He can now answer choice questions “do you want red or blue?” He pretends to talk on the phone and jabbers away despite it not being actual words yet. He amazes me.

But there is still another side we are currently dealing with on a daily basis, which is 5-years-old, the year of self-injury. Two plus years ago it started as a head nod. It wasn’t typical, but it wasn’t a problem either. Last spring it started in the car. He just decided he didn’t like our car rides to and from school and he started to head whip forward, causing a cracking sound.

The doctors didn’t agree – stim, tic? Does it matter? Does he need meds? We started to take him to a chiropractor for self-inflicted whiplash. We started him on medicine for kids with Tourettes, which didn’t work; we even changed his day therapy program to lessen the car ride.

Whiplash eventually led to face slapping, which intensified to the point the school was demanding we get additional supports at home. We were in over our head. “You need more for him, we can’t help you the way you need,” they said. The speech therapist initiated feeding therapy and cancelled it within a month due to his behaviors. It was out of control.

And right when it was over my ability to cope, I started to unravel. No control. Fears overwhelmed me. What happens to your child if you can’t deal?  Christmas was painful. He continually hit himself. No logic. I got a nice chunk of time off for winter and it was horrible. Neurology appointments, another EEG, no answers. How do we live with a child that hits himself over and over again? It’s not painful to watch. It’s unbearable.

It all stopped on January 1.

Two months respite.

And then it was back.

And it got worse, but different. He got a cold or flu. It wasn’t a big deal as far as anyone could observe. It lasted 2 weeks. He lost 7-8 lbs. I thought watching my baby whip his head as hard as he could was intense, but the days he stopped eating were some of the hardest in my life. My husband and I snap at each other hard during these days. Everything holds together by a string. I go to work to forget my life at home is harder than I can handle. I email his school daily to see what approaches, interventions are working or are not. I would take him to the doctor 5 times in 2 weeks. No answers. Blood drawn, hospitalization around the corner, his little skeletal system showing so clearly. Could my son starve himself to death? Should I still be going into work? How long will this last?

And then it just hit me. Stop trying to give him his normal, preferred foods and get him kid approved junk food. And so I did. I gave him the choice of anything. He chose chocolate pudding and I fed him. I was victorious. He moved on to a Pop Tart, Little Debbie cakes, cookies, cake, and ice cream. He didn’t stop. He tried nearly half of the $100 worth of junk food I had just acquired from Target. After the second food, he was finally feeding himself without spitting or injuring himself.

And ever since then, he gained the weight back and we just remember those days as the hardest to date. Luckily for us, not a continuous issue. Just a strange detour on the journey.

WHAT I KNOW

I am relieved, but it’s not over. This new chapter of being 6-years-old begins with a new slew of therapists helping us outside of his normal therapy hours. His head bobbing has turned into a fist-to-chin; he is basically punching himself. His little chin is red and irritated from constant hitting. His knuckles are red too.

It’s painful to watch, and the complexity of this behavior is beyond a regular ole’ parent’s ability. I will make the sacrifices I need to within my marriage, career and social life if that means he can have a safe and happy life.

Autism has many lessons that are just as positive as they are hard. Not only did I learn early in his life that we only have so much control, but we also can’t take things for granted. The biggest lesson learned is how some children never learn to take care of themselves, dependent on others for bathroom needs, dressing and learning basic academic skills. Despite being a teacher, I have learned about a world of individuals I would have frankly not known to exist.

As I learned about these things, the fear grew. Would my child ever talk to us? Have friends? Make his own meals? Graduate from diapers? What if he lives with me forever? Have a job? What school will he go to?

How could I possibly care that my neighbor is going on and on about how her 2-year-old isn’t potty trained when she hasn’t noticed my 5-year-old standing there in a diaper? This is just a small thing. Rude, but forgivable. I want to scream ”BUT HE WILL BE POTTY TRAINED ONE DAY! What if my child never gets out of DIAPERS?”

But, that’s the thing. These things people say to me are just a small part of the bigger picture. I am worried endlessly with a list of what-ifs and those questions burned in my head. But some of the what-ifs and questions have been replaced with beauties I failed at the beginning to know were ahead.

No matter what my son accomplishes, when he accomplishes something I am AMAZED.

I didn’t know that when he first spoke a word it would feel like a MIRACLE. It wouldn’t be kind of cool. It wouldn’t be like – wow, that’s neat. It would feel like my mind was being blown and that it was all going to be ok.

When he walked up to the toilet for the first time this week, lifted the seat and urinated on his own without reinforcement or prompting – it was INSANE. There aren’t words for realizing your son might not live his teen and adult years in diapers.

When he learned how to navigate the You Tube app and play with a preferred toy without an adult it was AMAZING.

The day he stopped asking people to feed him (recently) was UNBELIEVABLE.

My son didn’t willingly crawl until he was 4. His first words were ABC and I love you. He can take his glasses on and off without help, and shows he understands what we say despite being able to speak conversationally. He calls me mommy, sometimes.

There is nothing on this earth that has ever given me joy like watching my son accomplish goals we wanted for him years ago. The lows may be low. They may be lower than non-special needs parents can comprehend or care to know. But I get a gift on the other side of this parenting journey that some will never understand too. For that, no matter how hard it might get, it sure makes those highs even higher. I do wish I could share what that feels like. And I can’t wait to see what else is in store for the chapters ahead.

I love you sweetheart.

 

  1. Vicki Thunstrom says:

    This was so amazingly beautiful. Thank you for sharing a bit of your life with us. It gives me so much perspective on life. When I am frustrated with my own child and having my own pity party, I pray I will remember you and others and pray for your victories along the way. SO many blessings to you and your family.

  2. MNAutismMom says:

    Thank you for taking the time to read and comment on my post.

  3. Heather Shedivy Hodge says:

    Bless your heart!

  4. Nicole Marie Newfield says:

    This is so insightful. Prayers as you continue this journey!

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