Fear of Age

In a Facebook post earlier today a friend mentioned that her autistic daughter has never had a real friend. Ever. She’s 16.

In another blog I read about a teenage boy whose meltdowns became so severe that the police had to be called, not because he is a criminal but because he is simply too big, too strong for his parents. They can no longer keep him safe. They can no longer keep themselves or his younger sibling safe.

It is in those stories; those brief glimpses into what lies ahead of us in this journey that I feel my heartbeat quicken and the panic rise. All parents wish their children didn’t grow up but for me, it is not simply because I want her to stay little and have endless tea parties. It is cold, hard, in your face terror of what the years ahead hold for us.

You see, right now it’s “simple.” She’s 5. She struggles socially but is academically on target, and in some places I dare say gifted. Her classmates notice that she’s different but they still try. They still holler, “Bye!” when I pick her up from school. There is one little girl in her class that always tries to care for her; look out for her.

Her meltdowns are not that frequent and when they happen I can bring her back; literally or figuratively. I can still help. I can still reach her.

Mama’s touch still works.

What will I do when it doesn’t?

What will happen if I can no longer reach her when the world becomes to much?

What will happen if no one is hollering “Bye!” at the end of a school day?

How will we navigate that? CAN I navigate that? Am I strong enough, good enough? Is my love big enough to hold her up in these moments?

As I type the very mention of it is invoking anxiety.

I feel like I should read as much as I can, learn as much as I can- as if my daughter’s adolescence is test I cannot fail. In a very real way, it is.

I wish I could tell you that there is a point to this post. There is no magic answer, no deep wisdom; there is nothing but fear.

This is a scary maze of growing up with our kids; trying to find the right turns to lead them to the best life they can possibly have and I’m in it with you.

 

Autism Awareness Gets Real

As everyone knows, it’s Autism Awareness month. It’s all over the media. Many of you may have seen blue lightbulbs on your neighbors’ porches. It’s a month that families all over the world, and right here in Vermont, strive to not only bring awareness of autism to our communities, but acceptance, understanding and inclusion.

Inclusion is not proximity. Inclusion is not simply having an autistic child in the same classroom as his or her peers. Inclusion is not just adding a disabled child to a team sport. Inclusion is striving to make these experiences as successful for a challenged child as it is for a “normal” one. Inclusion is understanding that we are ALL different from one another- autistic or not. I am different from you. You are different from me. Neither are “less.”

Imagine, if you will, being a child in which the world functions in a way that you don’t understand. Imagine that the sounds are too loud, the lights too bright, the smells too intense. Place yourself there, for just a minute… Imagine that you are on a playground watching your peers play a game you know how to play. You want to play. You want to run over and join them and show them that you can be a part of things too, but you don’t know how. You don’t know how to speak the words. You’re trapped within yourself, longing for someone to come invite you, to make it safe.

No one comes.

Imagine how you feel. Imagine how your mom must feel, unable to make it better, unable to wave the magic wand that all mothers wish came with our children to make all of your struggles go away. She can’t and her heart breaks.

A few hours later it’s time to go home. It’s a lot different there. There isn’t someone to help you every second of every day because you have siblings. The sudden change is more than you can handle after everything that happened at school. You don’t have a way to express how you feel. You’re body is vibrating with the anger you held in all day. The teachers don’t understand you. You want to learn but they don’t know how to teach you. Your peers, who you desperately want to be friends with, ignore you. The lights over your head sounded like airplanes. The smells of the cafeteria made you sick but you were forced to sit still. All day someone demanded that you look in their eyes when they talk to you. They don’t know how uncomfortable it is.

You get home and explode. Home is safe. Mom understands why you’re angry. You don’t mean to be destructive, you just can’t hold it in anymore. Glass breaks. Lots of it. You’re bleeding. Mom tries to help you calm down; tries to treat your cuts but you can’t stand the touch. You run. You don’t know where you’re going. You don’t know that it’s dangerous. You don’t notice the cars driving down the street. You just run. Run from it all.

Now, imagine that you are the mom in this scenario.

Imagine that you spend your life fighting, begging, pleading, crying for someone to understand, just as your child does. Imagine that the services you need to be able to give BOTH of your children as much of a normal life as you can, are denied, cut back, refused. When you ask why you are told that P.C.A (personal care attendant) time can’t be used for safety or supervision. You wonder how you are going to be able to shower because you can’t leave your child alone without risk of harm. You wonder if you will ever sleep again. You wonder how you’re going to get through the day, never mind tomorrow. You cry in defeat and anger at a system that just does not understand.

A few days later, after exhausting all resources, someone tells you that your child qualifies for residential placement, since you cannot possibly meet his needs at home. You are so stunned you can’t speak. You are angry, hurt, and absolutely bewildered. You don’t want to send him away, you just want some help, some care, some understanding. Why is that so hard?

This is what families all over Vermont face, every single day. This is what we’re talking about when we say that more than awareness, we need understanding and acceptance.

In a state that can easily spend a half of a million dollar to “assess” VT Health Connect why are we so willing to split our families apart instead of giving them the help they so desperately need and deserve? Evidence based treatment that should be covered under the Autism Treatment Bill, passed 4 years ago, are not being provided because Medicaid reimbursement rates have been cut and designated agencies cannot afford to provide them. Somehow the powers that be think it is cheaper to send our kids to residential care than it is to care for them right here at home.

The average cost of a year of residential care is $200,000 and can be as much as $400,000 for 24/7 one on one care and other services.

The average salary of an A.B.A therapist is $33,000 and $22,000 for a P.C.A, according to Glassdoor.

You do the math.

There is no logic. There is no heart.

This is a multi-faceted problem with no easy solution, but there is a solution. We need to come together and find it. Too many of our neighbors are suffering. Too many of our children are unable to get the help they need to become as independent as is possible. Too many parents are faced with impossible choices that they wouldn’t be faced with, if they had adequate community and organizational support.

We, as a community, are not asking for pity. We are asking for help. We are asking that the great State of Vermont rise to it’s commitment to put our families first. Will you join us?

The vortex, landmines and me.

“The flowers are gone, the flowers are gooone!” Tears streamed down my beautiful daughter’s face as I tried to explain that the seeds we had to plant would make the flowers grow back. She doesn’t understand and she cries harder- red faced, short, quick breaths, and big heart breaking tears. What she didn’t know is that I was crying with her, as this continued for a half hour, or more. With each tear, each “The flowers are gone!”, I felt another piece of my heart hit my feet. Was it 5 minutes, an hour… more? I don’t know. We were stuck in the vortex of autism.

It was intended to be a fun, sensory activity. My little girl loves nature, dirt, flowers- she loves the many textures and colors that come with it and so I, perhaps naively, thought planting seeds in the ground and in pots would be something she would love. How very wrong I was. Or maybe not. Maybe next week she’ll love it. Maybe.  I’d collected all the supplies over the course of a week or so, excited to finally be able to get outside after a long winter and do something fun with her. I had this vision in my head of all us with our hands dirty with potting soil, laughing, picking where the next round of seeds would go. See, there are times that I forget. I forget that autism is a thief. I forget that it can invade my beautiful little girl and leave us both breathless, struggling to find calm. I forget that she’s not “typical.” It’s easier to do than you might think. In the comfort of home she’s not “different.” She’s D. She loves dress up and sparkly things; she loves to run and play; she loves to explore. She’s a ball of sunshine and fits of giggles that make my heart soar. She is “my girl.” I adore her.

I adore her and I hate autism.

There I said it. I hate autism, with a passion; with a vehemence I didn’t know I could feel towards something I can’t see or touch.

One well meaning friend told me to try to believe that God doesn’t give us more than we can handle. Ha. Pardon me while I spit out expletives I can’t type here.  It may take a few…

Then there are those who will try to tell me that autism is a gift. I can’t be convinced that a gift comes packaged in this kind of pain. Maybe they don’t know this level of heartache- and if that’s true, I am happy for them.

Living with autism is like walking in a minefield, you never know with every step, every activity, if something will blow. You never know what is safe, and what isn’t. Just because it went well yesterday doesn’t mean that it will today.

There are days when I feel like I’ve got this.

There are nights I feel like I’m failing.

There are days when the pressure and stress is so high that I realize I’d forgotten to breathe.

There are nights that she curls up next to me on the couch and together we read, sing, take “selfies” and giggle.

The autism spectrum- it’s not just for those diagnosed. It’s for us, their families, too and just because we’re on the “high functioning” end today doesn’t mean that tonight won’t end in tears. It doesn’t mean that even in those tears, we won’t still hope, still love, still pray. We still believe in the child we love that we can’t always reach, but will never stop trying- even if we feel like we’re pounding our heads on the proverbial brick wall.

It’s not easy. It hurts- and it’s ok to admit it. Sometimes we have to fall apart to find all of the pieces and put ourselves back together- with a little extra glue.

Blissfully ignorant.

Autism journey

When I began this dance with autism I admit to not knowing a thing about it. What I knew is that my princess, my daughter, the reason for my every breath was out of my reach. At just a year old she wasn’t saying anything- not Mama, not Dada- nothing. When I, standing just a foot away from her said her name it was as it the sound of my voice hit a wall that separated us, bounced back to me and lay broken at my feet. She didn’t turn to me with a smile as I’d seen so many other children her age do. She didn’t even seem to know that I was there at all.

Many nights I’d lay awake at night and wonder what I was doing wrong. What was I missing? Was I a bad mom? Those questions did a violent dance in my head as I wrestled with all of things it could be… Was she deaf? That didn’t make sense because she would come running from the other end of the house if she heard the bath water running. She loves baths! The only answer I could find was not that there was something different about my daughter, but that there was something wrong with me.  

At her one year check up I fearfully mentioned to her pediatrician that she wasn’t talking. Should I be worried? I knew I should be but in asking that question I hoped that she would reassure me: “Oh no, every child develops at their own pace.” Instead I heard the words autism, assessment, Early Intervention. As soon as she said it, I knew, in the way only mothers can. I felt the word enter my head and drop to pit of stomach and then sink slowly, letter by letter, to my feet. In a daze I gathered up this beautiful girl that I love so dearly and headed to the car. My heart was racing and I couldn’t think straight. Never for a single second did I think of my beautiful angel any differently- what I wanted was answers. I wanted to fix it. NOW.

Since then she’s received the “official diagnosis.” She continues to receive speech and occupational therapy. Most of all, she continues to be the most beautiful, loving, smart, (I could go on forever!) little girl I have ever had the honor to know.

In a little over a year this wonder-girl has gone from being entirely non-verbal to having a vocabulary that grows by the hour and becomes more communicative by the day. Every time she says something my heart sings. Her voice is the most beautiful music I will ever hear. She will now cuddle with me- more than cuddle; she molds herself to me and LOVES it when I rub her legs. There was a time when that was something I could only dream of, yearn for.

What were the ingredients of this transformation? Time. Love. Patience. Add a strong helping of God’s grace. Mix well and repeat. I thank God every day for giving me the wisdom to buy animal magnets and spend countless hours repeating the names and sounds of each. That was the start to her speech… The first time I asked her; “What does a lion say?” and she let out “RAWWR!” from the tips of her little toes I felt silent, happy tears sneak down my face as I swung her around the room in celebration.

Some days I miss being blissfully ignorant. I miss the ability to sleep at night without worrying about her future. Our future. Some days I mourn the loss of “normalcy.” I see other children her age laughing, playing, eagerly telling their moms about what they did or are going to do and it hurts. It hurts sometimes to see how different she is from her peers. There is a wall between her and those around her most of the time. I feel it’s presence; sometimes I think I can reach out and touch it- and it breaks my heart. I see the yearning in her eyes, the deep desire to understand, and the confusion. It is in those moments that I wish I had a magic wand that would break down that wall- and cry inside because I don’t.

And then there is every other day… the days that I spend playing with her, weaving therapy techniques into our every day, ordinary life. The days that I watch her in amazement and pride as she makes a “picnic” for us to share; yet another experience I wasn’t sure I’d ever have with her because of autism- and yet she’s doing it. The days that I want to burst with joy because she took my hand and led me to the couch with one her many books. They seem like such small things but they aren’t in my house. These are the moments that will stay forever frozen in time. These are the moments that I appreciate not being blissfully ignorant.

I remember being in a store a few months ago and there was a little boy walking with his mom. I think he was around 5 or 6. He was rattling off in excitement about something he had seen- and of course wanted. I keenly remember the expression of exasperation, the tone of annoyance in the mom’s voice as she responded. I don’t remember what she said. I was too caught up in my own thoughts… I wanted to tell her to be grateful that he could tell her what he wanted, what he feared, what he needed. I wanted to tell her that his ability to share his world with her was a precious, precious gift. I wanted to gently shake her and ask her, “What would you do if he couldn’t talk?”

I realized then that being ignorant wasn’t blissful at all. Sure it had blindly relieved some of the stress but that was such a small thing compared to the joy of understanding.  I see the world differently now. I see the things my daughter sees like the rain that she loves to watch fall from the sky. I feel the myriad of textures that exist in the world around me because I have made a conscious effort to try to experience the world the way she does. More than anything I know just how wonderful it is to watch her overcome. I’ll take that over being ignorant any day.