My Worry as an Autism Mom and Why It Never Rests

Parenting a child with special needs is so much more than helicopter parenting. It is never taking your shoes off, being ready to run, casing every room, knowing every exit and danger, being drenched in sweat, never sitting, searching your child’s body for marks or bruises, up all night worrying, parenting. It consumes me at times. And deep down I worry that it is destroying me.

It’s not like it happened overnight. It was an evolution. I am a pretty chill person. My kids fall and I wait for the severity of the scream and their reaction before I dive into mom mode. I believe in walking it off. Letting kids fall of bikes. Leaving a little skin on the field.

That’s the person I am…or was…or trying to be with my 4 year old. But as much as I wish I could just relax and sit back and watch Cooper play I know in my heart it isn’t possible.  He is constantly in danger.

I am an autism mom. I am caring for the most vulnerable of children. I am his eyes, ears, brains. I am one step ahead of him at all times.

And because of it I am slowly driving myself bonkers.

My worry never stops. At any given time I can tell you all the given dangers in a room. I know when Cooper has something in his mouth. I know when he is going to run. I know where he is going to dart to. I count the exits. I know every item that can be thrown. My shoes are laced up. I am in comfortable clothing. And I am ready to chase my kid if needed.

Trying to describe the emotional weight of caring for an extremely vulnerable child is impossible…but here is my attempt.

Ramblings of an Autism Mom Around Acceptance

My favorite topic to blog about! I’ve been noticing a trend. Every morning for the past few weeks I wake up to dozens of emails from parents looking for hope, help and guidance.

I TOTALLY UNDERSTAND.

I did the exact same thing when Cooper was younger. I would stay up late…usually after some sort of meltdown or a particularity hard day. And I would search for a blog where the child reminded me of Cooper. And  I would reach out. And in a really weird way I would feel guilty for reaching out to a stranger. But it was so much easier to say all of my worries to a stranger. If I said them in real life it felt too real. I felt like a traitor. I felt weak and embarrassed.

First, keep emailing me. Keep reaching out. It’s good for you and and it’s good for me. I enjoy hearing from you.

Second, I spent the day thinking about how I got to the well rounded peaceful place I am today. BAHAHAHAAAA! That was a joke. I am a mess. But I am a mess who smiles and laughs and is mostly at peace with her place in life.

How did I get here?

I gave into Autism.

Let me say that again. I gave into Autism.

I gave up the perception of what I wanted life to be. It was really hard at first.

I wanted to go out to dinner and join friends at events and go on family vacations…but, unfortunately, we couldn’t do those things. And the second that I accepted that I was able to relax and find peace.

Check out my video. I give more details. Hugs to all of you!

Acceptance: A Video Blog

Sharing on a tough topic this morning. I’ve been scared to share this video blog because it’s very real and raw but I know that other parents need to hear these words. It’s OK to be sad. It’s OK to admit that it’s hard. And it’s OK to grieve all the things you won’t do as a special needs parent. You are human.

The Hitting Has Begun

13342959_1342236069120183_2382830390327838836_nI have been blogging about Cooper for a few years now. Since the beginning I’ve received more emails than I can count from autism parents who have teenagers. The emails always start the same way. They say they have a teenager who was just like Cooper. And they tell me about the diagnosis and the process and the where they are currently in the journey. And then they go onto tell me that their daughter or son started hitting and kicking and exhibiting really aggressive behaviors.

I’ve read enough of these emails to know how they end.

These parents had to make the heartbreaking decision about what to do once they behaviors got to be more than they could handle. Do they keep their child home and hire care? Do they quit their job? Do they home school? Or do they find a ‘home’ or facility that their child can go too.

These emails kill me.

I can’t imagine the weight of that decision. Just thinking about putting Cooper in a facility causes me to tear up. It makes me physically ill. But I told myself I wouldn’t have to worry about it. Cooper had zero aggression. He was sweet and loving. We were safe. I wouldn’t be faced with that decision ever.

Then two weeks ago Cooper started hitting me. Like, really hitting me. Mostly in the face. No matter what I asked him to do I would get a slap to the face or a kick to the stomach. And then it started happening at stores and in front of other people. That’s a game changer. People take notice of a kid hitting their parent. Or hitting their brother in a really aggressive way.

There is no hiding it. Unless of course we hide in our home. Which I try to avoid.

The hitting and kicking are impossible to deal with. I don’t know how to react. Disipline doesn’t work. Hugs don’t work. It’s almost like hitting is who he is now. SCARY.

Here is what I know:

1.) These behaviors happen when I remove him from his comfort zone…whether that be an actual place OR challenge him to do something he doesn’t want to do. For example he ALWAYS hits me at grocery stores. We will be standing in the checkout line and he will hit me in the face. It’s embarrassing and loud and it hurts. He hits me a lot at school drop off as well.

2.) He is rarely hitting to be mean. He is laughing and being silly. In his own way he is probably playing. You can even see the silliness in his face.

3.) Disciplining does nothing.Every time  I discipline for hitting it is like the first time. There is no recollection of ‘why’ he shouldn’t hit.

4.) He doesn’t know the difference between giving a loving touch and an aggressive touch. And that is sad. Really sad.

5.) I’m not going to be able to handle him much longer.

I put in a call to his social worker and told him what was happening. He told me about a group that will come into our home and give me ideas on how to combat the behaviors. Sigh. I really thought we could avoid this.

I never pictured a day when Cooper would be aggressive. It’s so new I am hoping it just goes away but…deep down…I know it’s not going too. This is most likely the next phase. Nonverbal kids…teens…people…get frustrated and MUST find a way to communicate. And often it comes out in the form of aggression.

Cooper’s Talking Device

Hi all,

I wanted to share a video of Cooper’s talking device.

Cooper has been using it at school for a little over 3 months and we are just starting to use it at home. Much like everything else I find it to be a little overwhelming. Sometimes I feel like it’s just ‘another’ thing we are trying. But in saying that his speech therapists are RAVING about his successes with it. He can say up to 6 word sentences. An example would be: ‘I want to eat yogurt please.’

It’s amazing to watch him talk with it. Now in saying that at home we are not as successful. He is silly and pretends like he doesn’t know what he is doing. He will press a dozen buttons and listen to it talk. And then throw it.And I usually get smacked in the face a few times. But we are going to keep at it because I can really see the benefits. This iPad is giving him a voice that is more than screaming and grunting.

He is so silly….

 

Here is an email I received from Cooper’s AMAZING speech therapist. This mama was thrilled.

I just had to let you know how great Cooper is! He is just one of the lights of my life!

Here is the story: we were in speech working on our sounds. We finished a set of 7 sounds, so I it was Cooper’s choice, and he used his device to tell “I want to watch movies.” Perfect! I gave him the iPad with the videos pre-loaded in Safari and I leant over to write down how he did on his sounds. He turned on the Animal video (link below) and started using his device to sing along with the songs completely spontaneously!!!  The lyrics include the names of several animals, and he started labeling all the animals with the song and giggling his head off! It was amazing! The puppets would say “I hear a duck” and he would navigate to “duck” like lightening!

We also played this game with the Bath Song, with him labeling all the body parts they name.  Here are the songs we watched:

 Kate, he is so great and so eager to use his words when he is in speech! He is totally using his feelings words to talk about emotions and he greets me with “Hi Laura” when he sees me! I’ve also noticed an increase in his frequency of vocalizations in the last few weeks.

 I know you’re still (completely understandably!) hesitant about using his iPad for speech, but here are a couple of ideas on how you can play with it for a few minutes per day:

  • Snacks/Meals: Add buttons for all his choices, and let him pick what he wants to eat. You can start by just prompting him to use 1 button to request (e.g. “crackers”), then move on to “I want” + [item], and, eventually, “I want” “to” “eat” [item]
  • Reading: Add buttons for his favorite books and prompt him to request specific books.
  • Labeling: Cooper is labeling animals, vehicles, and body parts like a boss! You can prompt him to label any of these things when he sees them on puzzles, in books, etc. You can even just play short 3 minute games, where you ask him to find certain words like specific colors or body parts (e.g. “Cooper, tell me ‘red!’) to help him practice finding his words.

Nonverbal Autism

I say the words ‘nonverbal autism’ daily. Cooper isn’t just autistic…he is nonverbal. It adds another layer. A really difficult layer. It adds severe frustration. It adds yelling and screaming and sometimes scary, loud noises. It adds a lot of head hitting. And mostly it removes a lot of layers of simple every day interactions.

I will spend minutes staring at Cooper and wonder what he is thinking. Wondering if he is happy. Wondering what he would say to me if he could. Wondering if he understands me.

Talking devices aren’t covered under health insurance and they cost right around $5000. Before Cooper I had no idea how something like this could change a families life. Now I see it in the same category as glasses or hearing aids. 

I watched this video and cried like a baby at work. I simply can’t imagine what life would be like if Cooper could truly communicate with me.

Learning to Say Yes…

I know I’ve been gone forever. I go through these droughts where I don’t know what to say about Cooper. Trust me I have hundreds of things I could write about but the words don’t seem to flow out. Maybe I am too tired. Or overwhelmed. I don’t really have an answer.

We are still having major potty training struggles and successes. Cooper is pee trained but his pooping is worse than ever.

We have made the decision to keep Cooper at Fraser day treatment for one more year. So he will do half day kindergarten and half day Fraser.

We’ve lost his Medical Assistance and gained it back. What else. He’s still nonverbal. He’s still happy all of the time. He’s learned how to joke and be silly. He even wrote his own name on a Mother’s Day card for me. It was one of the proudest moments of my life.

He had his IEP evaluation and ROCKED it. His teachers continue to work with me and love him.

Every week of Cooper’s life is eventful. Extreme highs and lows.It’s been that way for 5 years.

And yet, I haven’t wrote a word in this blog. I took a break. I internalized. I cried and I laughed. I actually yelled at him one time so loudly that it made him cry.I’ve even struggled with how to discipline him versus his brother. So much has happened.

I continue to feel like I am failing him. Like I’m not doing enough.

I spent a full week crying to a friend about how I am failing as a mom and an employee and as a partner. And she told me to watch the video below. She told me it would change my outlook on being a mom.

And, she was right. I loved it. I watched it at work and I was immediately inspired to go home and let the house work and laundry and exercise go and focus on being a mom. I made a pact with myself to put my cell phone down and play with my children that night.

I was going to say YES when my children asked me to play. What a novel idea.

I went home and I was hell bent on playing. Of course Sawyer was game. We jumped on the trampoline and rode bikes and played cars and blew bubbles. The list went on.

No Cooper though.

He was busy wandering and stimming and playing on his iPad. I could not engage him no matter what.

By 8 pm I was exhausted. My day started at 5 am and I was spent. As I got the boys in their pajamas Cooper finally decided to ask me to play. He wanted to be silly and engage with me and read books and be tickled. And I felt like I had nothing left to give.

I had failed. I have a child that doesn’t ask me for anything…ever. I mean he asks me for milk and a snack. Lunch. Change his diaper. Or a hug. That’s about it. His needs are few. Cooper literally never engages with me. He never asks me to play. And when he finally did…I was too exhausted.

I felt awful.

How do you be the best parent to a child that needs almost nothing from you? It’s an interesting thought. I realized that I need to be available to him whenever he decides to need me. I need to make ‘saying YES to Cooper‘ a priority above everything else.He may only engage with me once a week and I need to be available.

Watch this video. It’s very inspiring and motivational and I LOVED IT!