Dear Mom, I Read Your Letter Today

A few days ago I shared a letter I wrote for my son Sawyer. You can read it HERE.  It was a toughie to share. It was brutally honest. It was real. And I really put myself out there. I purged every ounce of worry and self-doubt that I have about raising an autistic child alongside a typical child.

Let’s get something straight.

Cooper is an amazing little boy. He is funny and sweet and brings more joy than I can put into words. But…it’s different for me. I am his mother. He came from me. I am here on this earth to care for him. And I am 33 years old. I got some age and wisdom behind me.  I can accept the challenges that our life offers more than a four year old. Or a 10 year old. Or a teenager.

As I sat and read the comments on my letter I started to spiral…’you love Sawyer more.’ ‘I feel bad for both of your sons.’ ‘You don’t love Cooper.’

I had failed.

I thought long and hard about it. Was I wrong to worry about Sawyer resenting his brother?

 

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Quite possibly I guess. I’m not expert in child development.

And then it hit me.

I am not a sibling to a child with special needs (nor were the commenters). I am simply the mother. And what the hell do I know about growing up with an autistic sibling.

I had meant to help others by writing that letter. That was my only objective. Despite the thousands of amazing comments I worried that I had failed.

Then this letter showed up in my inbox. It was written to me as if it was from Sawyer. The author’s name is Kara Dymond. And it changed my life and outlook on everything. Just like that. I was saved again by a stranger.

Grab your tissues friends.


Dear Mom,

I read your letter today.

You should know that the person I am today is because of you, and because of my brother.

Know that I never resented the focus on him. Not really. I watched, and learned, what it means to love someone. To nurture them. To not only care for him, but to allow him to care for us. Not in the traditional sense, but in his way. Love is not a spoken language. He makes me laugh, deep belly laughs, and smile till the creases in my face hurt. He is pure, and the euphoria we feel when he is happy and with each small step forward is unlike any other joy. Being with him simplifies life to what really matters. Cynicism and self-absorption fade away. We experience life in full color. Those are the times that make the grief, the stress, the anger at the world’s injustice seem unimportant, if only for a while.

And those times you spoiled me? These helped me to learn to appreciate the sweet moments, and to take nothing for granted. That the chaos of life is tempered by levity.

You wondered how I would feel about my brother, now, as an adult. You never had to tell me what my role would be; I knew. There was no doubt. As I grow older, and you grow older, I worry too about outliving my brother, just as you do. He factors into my every decision. But it is not a sacrifice.

My best qualities are inextricably linked to my brother. I have an empathy and interest in others I would not have, without him. I understand the difference between treating someone equitably and treating someone equally. You taught me this.

In a way you could say my brother keeps me out of trouble. I don’t waste time on the wrong people. I have a list of qualities I look for in a partner because I am looking out for someone who will love us both. This may also seem like a sacrifice but it is not. I want a partner who sees the innate value in others, and who can move beyond fear to meeting him where he is.

He is a gift. He is the reason I now teach children with autism. When I was offered the job, I wondered if it was a good idea. Would it be too hard to work all day, sharing in the pain and joys of other families, to come home to ours? But then I realized: would anyone else love these students the way I do? Six years on, I have no regrets. And I want to change the world for my students. Which is why I am now getting my doctorate in autism education. Because the world is changing and everything he has taught me can be passed along to others. Because he really is the greater teacher.

I know there is a grief so deep in you that it is hard to get out of bed sometimes. But we are so much more whole than we would be without him. There is lightness that permeates the darkness.

He may not say it, and I definitely don’t say it enough, but thank you. I love you, for all that you have done. I am happy to help. I am grateful to help. I have been preparing for this for as long as I can remember.

Don’t worry, Mom, I got this. I got you.

Love, Kara


As I sit here and read this letter over and over again the tears are streaming down my face. Like the broken record I am I can say that I had a long night. I am exhausted.

Today I am feeling the strains of  motherhood…not just autism.

And then I read this letter from Kara and a feeling of calm washed over me.

This is going to be OK. We are all going to be OK. We are raising amazing kids. Some with disabilities and some without. We are teaching them love and kindness and we are ALL doing an amazing job.

I reached out to Kara and thanked her immensely for her words. I also asked her to tell me more about her brother and their relationship. It’s pretty great stuff. She is an absolutely amazing woman. She is making a difference at home and in the world. I can’t even imagine how proud her mother is of her!

Danny

My brother Danny is soon to be 29, and I am a few years older. We have two other older siblings. My sister now writes Autism policy for the province of Ontario, and like I mentioned, I teach students with autism and am getting my PhD focusing on supporting teacher development in the area, so D’s impact on all of us has been very apparent.

We are the closest, in age and in friendship.

Danny has autism, developmental delays, and acute social anxiety disorder. He was very late to speak, hid under chairs at preschool and I don’t know if he ever spoke at school. He speaks with immediate family, and is actually hilarious (mimes as if he was different characters sometimes, is the pun master) but withdraws around others.

He is incredible at video games, and now writes his own ideas for story lines, character descriptions etc. He has extreme intelligence in some domains and he struggles to function with many elements of daily living. Great with routines, once he has learned them, and predictability and all the rest. He lives with my parents, and stays with me at certain parts of the year so they can get a break/vacation, and because he needs one too!

He goes to a day program that teaches life skills and gets him volunteering stocking shelves a few days a week, and he has a job shredding office documents at my dad’s office. He is usually pretty happy though like all of us has his days where he is overwhelmed by his feelings and can’t understand why everything is so much more difficult for him. A lot of trouble identifying and expressing feelings and their cause.

A few years ago he patted me on the arm and said I was a very nice sister. It was the best compliment I have ever received.

Danny also adores my boyfriend, who once said, without knowing it has always been my plan, that Danny should live with us one day. My heart burst.

 

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Autistic Kids Grow Up To Be Autistic Adults. And It Can Be Wonderful.

Before my son was diagnosed with ASD I would frantically search out stories, blogs and articles of hope. Stories where it turned out NOT to be autism. Stories where instead of autism the child was actually deaf. Or allergic to gluten. Or whatever. These stories had happy outcomes.

I did this because the stories of autism-to-life scared me to no end. I wasn’t ready yet.

Then he was diagnosed and even more ferociously I searched for stories were the child was cured. The child had autism and the parents started a therapy and boom. The child was better. I’d look for ways to fix him. That’s the truth. I am human.

Then, as I got closer to this bitch of a thing called acceptance I changed. I stopped looking for stories about autistic kids. I stopped because the only stories being shared were about kids that were extraordinarily smart, like Rain Man, or stories where the kids had unbelievable outcomes. Nonverbal at age 5. Graduated college at age 22. Running a business at age 35.

Those stories are great. But as a mom to a nonverbal 6 year old I had to stop reading them. They didn’t seem accurate. They seemed like 1 in a million. And this wasn’t going to be our outcome.

I’d read them and I would feel like I had to grieve all over again.

At this point in Cooper’s life I am hoping for…’said his first word.’ ‘Used the toilet.’ ‘Tied his own shoe.’ ‘Made a friend.’

Then I’d find stories that were the complete opposite.

Stories that scared me to death. Like truly made me cry and kept me up at night type of stories. Stories of parents having to institutionalize their autistic kids because the care got to be more then they could handle. Stories of autistic teens hitting their parents. Hurting themselves. Stories of bullying. Of abuse. Of wandering. Of death.

I wasn’t ready for that yet either.

I just wanted to know what the future ‘could’ be. What ‘could’ I expect.

I was in an interesting spot as a mom. My son was just a typical kiddo with autism. We weren’t extraordinary. We weren’t at the extremes. And because of this I felt super alone. We no longer identified with the autistic kids that spoke. And yet my kiddo was extremely social. I called Cooper the lost child. I still do. We are on our own island.

So, I created this Facebook page. And stories of positive, real outcomes have been pouring in. Stories of autism at age 15 and 30 and 50.

Autistic kids grow up to be autistic adults.

And parents of autistic kids grow older as well.

And as a mom, that thought scares me. So many unknowns. Language, self care, using the toilet. The list goes on.

Earlier this week a wonderful woman sent me the story of her 30 year old son Dan. Dan the Man has autism. And he is living a beautiful life. Here are her words. This story is real to me. Dan is living life. A beautiful life. A life that I would LOVE for my son to have.


Dan-the-Man’s Story:

I am the mom of a soon to be thirty year old son so I guess I would be classified as a pioneer. He was diagnosed before the computer age and when long distance phone calls were charged by the minute. I remember having the same feelings you are experiencing and just wanted to sink myself in the depths of depression. I do remember my turning point was after I had read “Thinking In Pictures” by Temple Grandin. I decided then and there that I would learn everything I could about Autism and we would do everything available to help our son. Professional evaluations took me down every single time because they gave me no hope. I kept looking for the small things in my son to show me that he was in there and I finally got it when he was almost two years old. I was talking on the phone and mentioned that Cheerios was the only food he would eat, he got up from where he was playing and went to the pantry to get the Cheerios. I realized at that moment that he was receiving signals to his brain.

I then started researching everything I could find on Autism, calling directory assistance to get phone numbers of doctors and research places that had been referenced in the ten books I had found about Autism at the library. I found Dr. Rimland and Dr. Lovaas who seemed to know more about Autism than anyone I had ever met. It took almost three years for the wheels to completely start turning because I was afraid to take the big step into committing to a program. I had the local professionals tell me that I was wasting my time and money because there are no cures for Autism. Then I had these studies in my hand from California of children being able to mainstream into regular education through strict behavioral modification programs. I found another clinic that was having success with the biomedical treatment including testing for food allergies, heavy metal poisoning, amino acid deficiencies, vitamin and mineral deficiencies and overages, they were addressing nutritional part in the brain/gut connection. Our neurologist stopped all vaccinations as soon as we had our diagnosis. I was attending conferences to learn everything I could from all of the doctors who were the experts in the field of Autism. I would usually leave with my brain so full of information that I could barely process it all.

Long story short at age five we started a home and school based ABA program with two college students heading it up, we went to a Walsh Clinic and had all the biomedical testing done, had a spect scan to map his brain, did Auditory Integration Training and treated for overgrowth of Candida Yeast…. somewhere in the midst of all of this we started seeing changes, small at first and more as time went by. Language was the last part to emerge, he had a few words but, they usually had to be prompted.

His conversational language did not come until his late teens and about that time his social skills started to develop. He is now a very well behaved, fun, friendly and outgoing young man with Autism. He is also a cartoon information and video game genius who loves to research new information.

Daniel will celebrate his 30th birthday March 14. I can’t believe we survived those early years of no sleep and constant fits of head banging and screaming. I had to learn to think out of the box because we could not afford thousands of dollars to pay professionals. We made thousands of flash cards with pictures cut out of magazines; we used common household items as teaching tools and invested in a trampoline, which ended up being his place of learning.

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Dan the Man

Kate: Can you tell us about Dan at age 30?

He plays baseball with a Miracle League team. He is home with us, manages his money and helps around the house. He worked for a year and went to a small college for one semester. He had the only A in his freshman English class and two B’s in his other classes. He could not attend college because he could not pass a section of the high school exit exam. He passed the the English and math parts with flying colors. Alabama law said he could not attend college until he passed it. He worked for a year at Belk and then we moved to another state. He loves to bowl, play baseball, swim and travel. He never meets a stranger and loves to learn new languages. He researches cartoons and movie characters. He can name every cartoon, who dies the voice, tell you if they are deceased or living and what year the cartoon made its debut. Winnie the Pooh was our breakthrough character and Pooh was his first word.

Kate: What were the younger years like?

He attended public schools with a paraprofessional from K-12. He mainstreamed in kindergarten for art , music, lunch and PE. He fully mainstreamed in second grade with adjustments to classwork as needed. I met with the new teachers every summer to help them understand Dan and his needs. The first weeks of school I always met his classmates and explained very openly everything about Autism. They could ask any questions, this took care of any bullying or making fun of his odd behaviors. I explained all of his odd obsessions and unusual ways off learning. The kids were awesome once they knew what to expect.

Kate: When did Dan start to speak?

He was around two when he said his first word. I was singing the Winnie the Pooh song to him and our older son interrupted me so I left it hanging at Winnie the….? Dan raised his head up from my shoulder and said “Pooh” We stayed up late getting him to say it over and over. We started using that method to prompt a word from him.

His first complete sentence without a prompt after treatment for Candida Yeast was “My Brain is clear.” He was nine years old. We fought systemic Candida for many years, that stuff can do a number on the brain when it gets systemic.

Kate: What is you advice to parents?

So my words of wisdom to you would be to never give up. Stay the course and do not leave any stone unturned. I am thankful that I did not listen too many of the so called professionals who told me that he would never make progress because there are no cures for Autism. All cases are different and I guess they are correct in some ways because we did not cure Autism but we cured so many of the issues that were contributing to his out of control behavior. We took care of food allergies and sensitivities, gut issues, hearing sensitivities, sleep issues, out of control behavioral issues, language and learning delays and seizures which helped him. It was hard and the only regret I have is that we did not start when he was first diagnosed. It took years to correct some of the problems so do not give up after a few months if you do not see results. I gave up on the diet after several months but revisited it after additional testing, so glad I did because we saw huge changes after going back to eliminating artificial colors, dairy and preservatives.

I teared up when I read your post today because I have walked in your shoes. Praying for strength for you and all the other parents walking this path now. God bless.

Want to share your story? Message me on Facebook at FindingCoopersVoice. I’d love to hear from you.

I Can’t Fix My Son

I shared a video last night on Facebook and I can’t believe the overwhelming support I’ve received.Thank you to every single person that messaged me or left me a comment. Just reading the words, ‘I understand,’ is more therapy than I can describe. Knowing that people out there understand is amazing. It makes me feel less alone.

So, what was the event that caused my crash?

Well, we had an evaluation for Cooper yesterday at an autism center. I am looking for options that will replace public education. I am pro public education in most cases but I feel in my heart that Cooper needs more than the school district can offer. And in Minnesota the options are limited.

The evaluation went well. It was fine. It is what it is.There were even some positives that came out of it. For the first time in Cooper’s life he did the evaluation with the therapist alone. The observation part. Jamie and I actually sat down for 15 minutes and had a coffee. IT WAS AMAZING. On a tough note he threw chairs and puzzles for the first part of the evaluation. I’m used to it. But seeing it in public is hard.

So, now we wait to see what options and support they can provide to us. That’s the black and white side of it.

The emotional side….the mother side…that part is way different.

Yesterday it hit me like a ton of bricks that I can do every possible thing to fix my son and he will still be autistic. I can’t change the outcome of this. And the heaviness of that feels like I am on a roller coaster of emotions at times. And it causes me to question what I am doing. And how much I should be doing. It’s terrible. I feel out of control.

I am going to come out of this funk and sadness friends. It happens every couple of months for me as an autism mom. It usually springs up after an evaluation or the start of something new like kindergarten. Or a super hard event. I always get through it through . And I will this time too. I will wake up one morning and dust myself off and pull up my MAMA BEAR AUTISM ADVOCATE BIG GIRL PANTS and kick some serious ass. Because that’s what parents do. That’s what I do. That is me.

Anyhow. Thank you for sharing my journey with me!

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.

To the Parents of Special Needs Kids: I See You

I want to give a shout out to the parents living every single day with a broken heart.

Parents who are caregivers for life.

Parents who wash their child’s feet and picture what this will be like when they are 25. Or 40. Or toenails. Or haircuts. Or when their child needs to start shaving. Or when puberty hits.

To the parents that worry about life after High School. And their own retirement. And after they die.

I’m scared too. I’m scared of the future. Hell, I’m scared of tomorrow.

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I see all the parents who fight with doctors. And schools. And fight for some form of simplicity and joy.

Parent’s that fight for any scrap of normalcy. Just a normal, simple day.

A day without doctors or therapy. I day with out talking about their kids disability.

Parents who drink coffee all day. Parents who physically collapse at the end of the day. Parents who make daily lists with things like: Get prescription, call the county, call social worker, email the school, order diapers, attend family therapy, find a new GI doctor, charge the IPad, charge the Kindle, etc., etc., etc.

Parents that can’t describe the shrieks that come of out of their own child’s mouth. Parents that can’t describe the haunting sounds that they hear all day. Or how many times they say, ‘turn the iPad down. Or parents that actually cry when the internet is down. Or when the battery on the iPad dies.

Parents who wake up every morning and have no idea how they are going to get through all of the appointments and work and life.

But they do it.

I see you. I see that you are hurting. And I understand. Trust me when I say I know the agony that is literally eating your heart and stomach. You love your child more than you can even put into words.

I get it.

I see the parents that celebrate the tiniest of victories. Maybe your kiddo used a spoon. Or didn’t scream at the tag on their shirt. Or tried a new food. Hell, maybe they just touched a new food. Or allowed it to be on the table. Or maybe they slept through the night at 6 years old for the first time.

These victories make no sense to people that don’t live our journey. So you don’t say anything. You keep it inside. But then you feel like you are robbing your child of a victory.

You can’t win. I see you. I am you.

I see that you are operating off of no sleep. And you know what real exhaustion feels like. Because it’s not just being physically tired. It’s so much deeper than that. It’s carrying the weight of a special needs child. It’s in your soul. It’s indescribable.

I see you smiling when people stare at your child. I see you.

Your child melts down at the grocery store. Or in the waiting room at the doctors office. Or my favorite…they physically lie down in the middle of a road or a parking lot.

People stare. Hopefully you are wearing sunglasses so you can tear up behind them.

I’ve heard you begging your child to just do something. Just walk please. Just eat this please. Just hug me please.

It’s opening up their backpack and seeing work that the teacher has clearly done. Knowing that your child would never color like that. Or cut pieces of paper.

It’s seeing your child’s school picture and seeing that their disability is no longer hidden.

Your child has special needs. It’s right there in an 8×10. It’s wanting to rip up the picture and run and scream and hide.

It’s getting angry at the teacher for the bad picture knowing in your heart that getting pictures of your kid is impossible.

It is crying the whole entire way to work and wiping off your eyeliner before you walk into your office.

It’s putting your headphones on because you can’t talk about autism for one more second.

It is getting emails from the school about Fun Runs and Movie Night and Play Dates and knowing your child won’t participate in any of them.

It’s wanting to volunteer at the school but knowing when you see all the normal children you will feel like throwing up.

I see you. It takes an unbelievable strength to have a special ed child that is part of public education.

I am so sorry. It is terrible. You you hate yourself for being jealous of everyone else.

It’s joining groups like the special education advisory council because you don’t fit in at the PTA. It’s feeling like Special Ed is tattooed on your forehead. It’s feeling disabled yourself.

It’s hating the other parents and the children.

It’s real. And it is so raw.

But you go. You go to the events. You attend the meetings. But you do it all with a lens of special ed. There is a constant reel running through your head saying, “my child can’t do that. We can’t do that.”

That takes real strength.

It’s the pit in you stomach when the teacher emails pictures from school and your child is never in any of them. And you get it. You really do. Your child is too disruptive. They are too difficult. They are lost somewhere in a dark room.

It’s not being able to say how your child is doing in school.

It’s wondering every day if you should quit your job and home school your child.

You are raising an invisible child.

And you wonder if you should give up.

You get it. I get it. We together get it. It’s the world that doesn’t.

It hurts. Oh my god it hurts so unbelievably bad.

And you look normal every day. You get up. You fight a whole battle before work. But you make it there. And you smile. You laugh.

I see you friend.

It’s hearing other children talk to their parents and laugh and smile and enjoy typical activities.

This is for the moms and dads that put on a smile every single day and pretend that it doesn’t matter.

It’s hating their small little voices because you have never heard your child’s.

This is for the parents that give up every single day and wake up the next morning to try again.

That is strength my readers. Walking through every day with a broken heart and breaking down in your car.

I just want you to know that you didn’t do anything wrong. I think that every day. Not a day goes by where I don’t blame myself for Cooper’s disability. I must have done something wrong.

And the never ending feeling of not doing enough. I feel it too.

And knowing you will carry this weight until you die.

I get it.

I just want to say….I see you. And what you are doing is incredibly amazing. And you are doing it all with a broken heart. A broken spirit. And the weight of the world on your shoulders. That my friends is strength.

And I am so unbelievably proud of you.

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The Sentence That Changed My Life

14088725_1417495344927588_794622903_nI am often asked what was the pivotal thing that changed my way of thinking about autism? Or about my attitude towards my son’s autism?

How did I take that first step towards acceptance? I had a mom tell me it took her 5 years to get to a comfortable place with her child’s disability.

Well, I would agree that mine took 5 years. Maybe closer to 6.  Even today I still have struggles. Like ordering a handicap sticker. Or visiting my sons school and saying, ‘my son is in special education.’ Those are toughies. Mostly seeing other kids. That’s the worst.

Acceptance is a journey much life grief. And it’s not linear.

Mine was a series of falls and trips into acceptance. It was hella messy and involved multiple moves, lots of denial, loss of friends, even more tears and a divorce.

But yes, I have identified a pivotal part of the journey.

We were living in Duluth. I was trying every single thing I could to get my ‘speech delayed’ child to start speaking. He was 2 and obviously a late bloomer. (Insert eye roll and snicker here)

Summer had just begun. I knew in my heart that something was seriously wrong with my son’s development but at age two it was still somewhat hidden.

MANY 2 year olds are speech delayed. That is a fact. I also had a boy. Many 2 year old boys are speech delayed. He pointed. He waved. He made eye contact. These are facts. And I held onto them tightly.

I had just changed my schedule at work so I could be home with Cooper every Wednesday and Friday.  The truth is the majority of his medical care and therapy care fell under my role as a mother. This is not a bash on Cooper’s dad. I assumed the role. I wanted to do it all. I wanted to fix him. And no one could do it as good as me.

Because of this I struggled to maintain a full time job. This is a real problem for parents of kids with needs. Or any caregiver for that fact.

So, it was my first summer home a few days a week with my kiddo. I loaded us up with therapies and play groups. I researched every park and toddler type activity in a 20 mile radius.  I found every single Pinterest activity under the sun for toddlers. You know the ones. Shaving Cream Sensory activity. Sand bins. Paint with potatoes.

I did it all. And holy shit did we fail.He either refused to participate in the activities or he destroyed them. It took me another year to get the sand out of my home and even longer to get all of the shaving cream off my ceiling.

Play groups were a bust. Cooper wouldn’t participate. He wouldn’t play.  He pushed other kids. He hid. We tried going to parks. Nope. He couldn’t climb. Instead he ran and ate sand. We tried ECFE. This was the worst one. He refused to separate from me. Every other parent sat and drank coffee while I chased Cooper or held him screaming at the door. ECFE is great when you have typical children. We did not fit in and I still have nightmares about it.

I tried simple things like feeding the ducks. Or throwing rocks into a lake. All fails. No activities worked. He wouldn’t do any of them.  We got to the point where we couldn’t leave the house.

We tried speech at the hospital. Fail. We tried Occupational Therapy at a place focused on kids. Bigger fail.

We started going to therapy at a clinic specializing in language disorders. EPIC FAIL.
This sounds dramatic. It’s not. These are facts. I called Cooper’s dad every Wednesday and Friday crying. He worked at a bank. I called hysterically. It wasn’t pretty.

He told me to quit is all. I refused. Instead I did more.

I started to think I had the only kid that wouldn’t respond to therapy.

I bet you are wondering what the professionals were telling me. Like the Speech Therapist and Occupational Therapist. Nothing. I was smiling. I was faking my way through. We would laugh. They would tell it would be better next week. I often heard, ‘everyone talks eventually.’ That was a common one.

About this time Cooper got another infection. I brought him to the Pediatricians office and I had a meltdown. I sobbed and asked what was wrong with my son. But I think I ended every sentence with…but it’s SO OBVIOUSLY not autism.

She recommended we bring in the school district. We started with the Help Me Grow program. It was terrible. To this day I have the biggest distaste for the Help Me Grow program. Then we moved to the next level which was a family service plan. What this means is that a person comes to your home once a week and attempts to do therapy with your child. This did not work for us.

Cooper threw things at them. He ran. He refused to play. Or participate. I dreaded the visits. I dreaded the days off with Cooper.

Every week it was something new.

We saw doctors. Always more doctors.

No one mentioned autism.

I was making myself absolutely crazy trying new things. Then I started Gluten Free. Dairy Free. I added in Fish Oil. Then probiotics. I took foods away. I added foods in. I pureed every single vegetable you could think of made foods from scratch.

I read every single blog. But only blogs where they kids improved. They had to have a happy ending.

We started going for long walks around our 5 acre yard. He liked to wander. So I followed. That became our day. Wandering the yard and watching Thomas the Train.

Then one Thursday afternoon I was picking Cooper up from daycare.

I remember being especially exhausted. I had a 4 month old as well. A job. A family. A kid with a speech delay.

Cooper had been going to this daycare for a little over a year. It started fine but as Cooper’s delays and challenges became more apparent I could tell there was something brewing under the surface of our daycare/parent relationship.

Every pickup would give me a feeling of dread. She would tell me that he didn’t play with the other children. That he wandered around. He was anti-social. He threw. He refused to eat.

Each day at pick up I felt the weight getting heavier. I was telling Cooper’s dad all these things and he would say….’she doesn’t say them to me.’ WTF went through my head.

So, on this Thursday I remember getting out of the car. She walked up to me and told me that it was time for a serious conversation.

And then this woman…a daycare provider…not a doctor or a teacher…a woman I thought was my friend….said the harshest words that have ever been said to me. Today I am 33. This happened 4 years ago. And I can still remember it so vividly.I still feel that pit in my stomach.

She told me that I needed to accept that Cooper was different. She said that I needed to prepare myself for the future. I was living in denial. She said he was never going to speak. He would never ride a bike. And he most likely would never make a friend. She’d seen it before. She knew kids. Her dad was a speech therapist. Cooper was different and not like the other children.

She started comparing him to other kids at the daycare. So and so is the same age and he is talking and playing. Look at so and so and how she is playing hide and seek. Now look at Cooper. He is sitting in the driveway eating sand.

I was stunned. I felt sabotaged.

Imagine someone saying those words to you. Imagine what that would feel like.

Then she dropped the bomb.

She told me I was neglecting his care. I wasn’t doing enough. She said it was apparent that I was in denial and I was causing him harm by not getting more help. She also said she couldn’t help him anymore. He could continue to go there for daycare but she wasn’t going to teach him anymore. She also wasn’t going to ‘fake’ his work or art projects and that I would no longer be receiving mother’s day art projects or Christmas projects. There was no point. I didn’t need to see her coloring.

I stared at her. I remember thinking about strangling her. I thought…people have killed for less.

But instead I just stared. I knew if I spoke I was going to cry. I was paralyzed. I had a huge lump in my throat.

I was so confused.

At every pickup I would tell her about all the therapies we were doing. I was running myself ragged. I was neglecting my other baby. I was neglecting myself and my marriage.

The only thing that mattered was Cooper and fixing him. I was consumed by his care.

And yet, this woman told me I was doing nothing. Even worse, she thought I was actually neglectful.

I nodded. I backed away without speaking and put Cooper in the car and left.

I went home. I crawled into bed. And I cried for the whole weekend. Let’s call this my low point.

I had failed my son and my family. I struggled to get out of bed for a few days.

For me that was a turning point.

What she said to a first time mother of a two year was completely and utterly wrong. She ended up calling me and apologizing but the damage was done. To this day I think of those words…. He will never speak, never ride a bike and never make a friend.

I struggled to articulate my feelings to my mom and my husband. I mostly just cried for a long time. I was crushed. I had a broken kid. Or at least I thought not speaking, not riding a bike and not making friends meant I had a broken kid.

And then a few days later I woke up. Or, I rose up. I snapped out of it.  And I made the appointment for an autism evaluation at Fraser.

But the funny twist in all of this is, yes, she was right. But she was also so wrong.

Cooper is 6 and he doesn’t speak. He doesn’t ride a bike and he has never played with a friend. And it’s not the worst thing ever.

That was the pivotal moment for me.  At the time she gave me what I thought was the worst case scenario. I took it like a death sentence. Her words almost killed me.

And now, at age 6 my answer to her would be, ‘so what lady.’ Cooper is fine. He is happy. He is healthy. He doesn’t need to do those things to be my son.

She painted a picture of doom and gloom that ended up being true. And, it’s not all that bad. So, my kid doesn’t ride a bike. So he doesn’t have friends. There are hella worse things in life.

The worst sentence ever uttered to me gave me the anger and strength to get where I am today. Funny how that all works out.

 

 

My ASD Kiddo and Christmas Presents

It’s Christmas vacation! I absolutely love this time of the year. And having kiddos makes the holidays even more special. I know it’s a cliche but it’s so true.

Sawyer’s wish list includes a crane, remote control car, garbage truck, snowboard, hockey skates, and every toy at Target. Which according to him seems completely logical.

Every single day we talk about Christmas. It has been so amazing.

I missed all of this stuff with Cooper so I am soaking up every aspect of it with my baby.

And yet, despite the Sawyer joys, Christmas is so challenging with an autistic kiddo. So many obligations. People. Christmas parties. Gifts. Expectations. Foods. Noises.

I work very hard to keep expectations for Cooper very low. He no longer goes with to ‘new’ Christmas parties. He can’t. It is way too stressful for him. And in turn me. People used to get mad at me about not bringing him. And at different times I have been guilted into doing so. I think the last time I brought him to a ‘friends’ house for a party he knocked over a DVD rack holding roughly 750 DVD’s.

We weren’t invited back. And good riddance.

I don’t make him eat the food that is prepared. Never. I don’t take away the Kindle. I let him wear whatever he wants. And fingers crossed that involves pants. He’s allowed to roam and move throughout the house. He can have quiet time whenever he wants it.

This has taken me 6 years friends. If you have younger kids that are newly diagnosed you may still be struggling with this. It’s a really hard balance. Your spouse and family have their own ideas of what Christmas should look like. And Autism has changed that. I get it. You get it. They will eventually get it. For us it took 6 long years.

We made it and you will too.

So this year we will be going to Grandma and Grandpas and doing the rest at home.

So thankful for that.

People don’t understand the stress that goes into preparing to bring and ASD kid to a new place. From snacks, to dangers, to WiFI, to back-up electron tics we parents are more prepared than the FBI. It’s unbelievable. And exhausting.

Another big part of Christmas is presents. Getting them. Giving them. Enjoying them.

My ASD baby is so simple that he has no desire for presents. He doesn’t lack for anything. He wants to be warm. Fed. Have a sippy cup of milk. His cookies. His Kindle. His train video. WiFi. Amazon Prime. Netflix. His diaper changed. And to be naked. Which often conflicts with the warm part.

Those are his needs.

Simple.

Sweet.

Innocent.

There are times when it’s almost hard to comprehend his level of innocence and lack of greed.

Still, ss I was Christmas shopping this year my guilt started to creep up. What do I get Cooper? Nothing? Will he care? Even though deep down I know how stressful it is for him to open presents. He hates being forced to do it. He hates being watching. Sitting still.

I still feel like a terrible mom. Do I get him anything? Will he be sad as Sawyer opens his presents? I know the answer. It is no. Cooper will wander around on his Kindle while we open gifts. While we eat dinner. While we socialize. That is his happy place. Why mess with it.

And he doesn’t want anything anyways. What do you buy a child whose only joy is watching train videos on a Kindle. He already has 2 of Kindles. No more.

Still, I feel bad. What I wouldn’t give to have him involved more.

So. I bought him a lava lamp for visual sensory. Then I bought a bag of balloons. I am going to fill them with flour, cornstarch, rocks, marbles…you name it. He loves to carry them around and feel them.

Then I went into my Shutterfly account and found every picture that had a train.

And I had each one developed as an 8×10. He is going to lose his mind with excitement. I can’t even tell you how much joy these pictures will bring him. I’ll try and get it on camera.

Total price for my 6 year old son’s Christmas presents: $50.00.

I would spend a million if I knew it would make him happy. He is so content and sweet that it’s easy to forget sometimes. He is happy. He doesn’t need gifts.

The only thing he needs is love.

And I guess that is the true reason for Christmas.

I also stumbled upon some of our old Christmas cards. I always put a quote on them. Here are the last couple of years:

The one on the left if from last year. Think I was sad about Cooper’s diagnosis.

“Anything can happen child. Anything can be. Never stop believing.”

God I love that quote.

The other one is:

“And above all, watch with glittering eyes, because the greatest secrets are always hidden in the most unlikely places. Those who don’t believe in magic, will never find it.”

And this years:

” In raising my babies I have lost my mind but found my soul.”

That is the most accurate statement every written.

Merry Christmas all!