8 Ways to Prepare Now for Your Autistic Child’s Future

A few months ago my autistic, but otherwise extremely healthy child was denied life insurance. In preparation for college, J and I started plans for the boys that could be converted into dollars for college tuition. Recently, we were notified that Cooper was denied coverage. I was irate. Autism is not a death sentence. My son is healthy. He has no medical conditions.

After following up I was informed that Autism is considered a vulnerable and at-risk life. He is more susceptible than most to dangers.

Well, I couldn’t deny that. I even had the anxiety to prove it.

I was crushed though. I felt like my baby had been given a death sentence. Never in all my Autism processing did I ever picture my son not living a long, healthy life. This was the prompt that forced Cooper’s dad and I to talk about the future.

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Our son was autistic and would be for the rest of his life. It took 6 long years for that to sink in and reach my brain AND my heart.

And, even though he is autistic his future is still very unclear. There is no crystal ball that tells us what the future will hold for my little fighter.

I still pray daily that my son will ‘snap out of it.’ I pray that he starts talking.  I pray that he improves socially, cognitively, behaviorally and emotionally. I pray that he grows up and attends dances, birthday parties and makes friends. I pray that he graduates and attends college. I pray that he gets a job and gets married and gives me a dozen beautiful grand babies.

This is not reality though. That is the land of hope and wishful thinking. It is time for our family to plan for our son’s future.

The reality of the situation is that Cooper will live with us for the rest of his life.

I avoided these conversations for years because I felt that if we talked about long-term care then we were giving up.

And whenever I did bring it up someone would always say….’don’t give up hope. You don’t know what the future holds.’ And then I’d feel guilty. I’d feel like a bad mom. But here is the deal. I know my son. I love him more than I can put into words. But it’s time. It’s time to talk about caring for this little boy for the rest of my life.

It’s time our family switched from ‘hoping for the future’ mode to ‘planning for the future’ mode.

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Kacie K Photography

The start of these conversations were brutal. It appeared that like many other special needs families, Cooper’s dad and I weren’t always on the same rate of acceptance. Rarely are both parents to a child on the same page when it comes to a disability. It takes time. We all adjust at our own pace. But I felt like I was carrying the weight of his future on my shoulders. It was crushing me.

After the life insurance debacle I broke through to him. Our son had a life long disability. To us he is Super Cooper. A cute, funny, silly, train loving little boy. We try not to think of him as being any different than his brother. But that is not the reality.

It took us longer as a family to accept that our son might live with us forever than to actually plan for it.

I personally feel the key is to start talking. Just start the conversation. Look at your spouse and say…’are we prepared for our daughter/son to live with us for the rest of their life.’ It’s a conversation starter my friends. It may end in tears or a fight. Keep bringing it up.

Here are the 8 tips I can offer you to prepare for your autistic child’s future:

  1. Initiate the Tough Conversation

    You cannot do this alone. Talk to your spouse. Ask the icky questions. Talk about the future. Talk about how raising an adult child factors into retirement. Where you are going to live. Finances. Remember though to go easy on your spouse. We all accept at our own pace.

  2. Start Talking

    Start talking about Autism. Talk to your neighbors about you child. Tell them your child is vulnerable and to take action immediately if they see them alone. Invite your local police officers over to meet your child. Talk about erratic behavior and how they handle it.  Have conversations with your family, friends and their kids. Talk to them about autism. Just do it. Talk about the future and what that looks like. They will be more supportive if they know.

  3. Start Researching

    No matter your child’s age raising a disabled little person is expensive. Start searching for information (state and county specific) around Disability Waivers and CADI Waivers, Consumer Support Grants, Medical Assistance and Medical Assistance-TEFRA, and social security. I encourage you to get a social worker. Social workers can really help ease the transition from High School to adulthood. Look into savings plans.

  4. Take Safety Precautions at Home

    Look into getting door alarms, fences, overhead lighting, etc. Make your home a safe space for your child. It will put your mind at ease.

  5. Keep your Child Safe

    Look into getting a tracking device for your child like Angel Sense. Get a medical ID bracelet. Also, if you have an older child who may be left home alone think about getting a bracelet for yourself. It can say something like, ‘vulnerable child at home.’ If you are in an accident people need to look for your child. Look into ‘nonverbal/autism/disabled’ signs for your car, car seat or even your home. Autistic people can act erratically in crisis situations. This will notify law enforcement of their disability.

  6. Talk about a Living-At-Home Situation

    Our child is most likely going to live with us for the rest of his life. This is not negative. This is reality. Talk to your spouse about that. It can make some people very uncomfortable. And that’s OK. We all feel and accept differently. One option is to have a house with a complete living space in the basement or a separate part of the house. Your child can have their own space and live ‘independently’. Think about having a PCA in your home.

  7. Talk About Group Home Settings

    The thought of this makes me completely melt down. I can’t think about it. Cooper is so vulnerable and susceptible to abuse and exploitation. So, if Cooper shows ANY desire to move out and live in an adult, semi-independent setting we will start a small care facility and use the home I currently own. We’ve already started researching this.

  8. Think About a Future Without You

    Finding a guardian for a special needs kid is different than carrying for a typical one. It can be for life. Think about who you would ask to care for your child or adult child if something were to happen to you.

This is the icky side friends and I talk about it often. I talk about it because if I don’t it paralyzes me.  I am scared of carrying for a disabled adult. And that’s OK. I’m going to figure it out…but I can’t do it alone. As I look to the future I need my son’s village more than I ever thought possible.

I want you to know that you can do this. You are so much stronger than you ever thought possible. And you are not alone.

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Kacie K Photography

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Confessions of a Special Needs Parent

Parenting is hard.  I think we can all agree on that. You are raising a tiny little human from birth to adulthood without an instruction manual and silently praying they turn out sane and loving.

Now imagine if that tiny little human has a diagnosis of some sort. Autism. Cerebral Palsy. Traumatic Brain Injury. The diagnosis could be physical, emotional or neurological. It could be obvious. Or maybe it’s invisible to the outside world.

Scary right.

You aren’t a doctor. Or a therapist or a physiologist. There is no instruction manual. It’s just you knowing in your gut that something is wrong. It feels like a roller coaster. It feels out of control. And just like parents of typical kids…you have no idea what you are doing. But yet, you are entrusted to raise this tiny little VULNERABLE human.

At first you don’t want to acknowledge it. Then, you don’t want to believe it. And once you get over that hurdle you want to talk about it. You need knowledge. You need to vent. You need a friend. You need people to understand.

Parent Shaming

You turn to your spouse. Your family. Your friends. Whomever will listen. You need help. You need someone to hear you. But the conversation seems awkward. Strained. The friend looks at you funny. You see judgement. Doubt. They don’t relate. They don’t understand.

You try in the break room with co-workers. You try to vent during happy hour. But it never seems right. The looks make you feel shameful. No one gets it.

So, you stop talking.  You silence yourself. You start to wonder if you are complaining. Maybe you are just bad at the parenting thing. Maybe, just maybe, you are making some of it up in your head.

You start to doubt everything.

From that moment forward you struggle silently. You keep your mouth shut.

When you do mention any of your struggles you feel the need to put…’but I love my child’…in every sentence.

I want to tell you that this is wrong and it is an inevitable part of raising a special needs child. It happens to me frequently as a writer and a mother. So, in retaliation, I asked special needs parents to confide in me. I asked for their secrets. Their confessions. I asked their deepest, darkest thoughts. I did this because you and I need to know that we aren’t alone. Our feelings are normal. I also want to shed a little light on what it is like to live in a day in our life.

It’s a secret world.

My Advice To You Dear Friend

On your darkest days I want you to read these words from your fellow parents. And you will know that you are not alone. What you feel is completely normal.

I want to tell you that you will make it through this journey. You just need to change what the end result looks like. Make a few adjustments. Or, A LOT of adjustments. You prayed for this child like every other parent. And not once did you pray for a child with special needs. So, you need to adjust. Make modifications. All while going through and living the hurricane of special needs.

That takes time.

Go easy on yourself. Feel every feeling. Be upset. Be sad. This life is hard. And then learn to laugh. Because that’s the only damn thing that will get you through.

I promise you with every ounce of my heart that you are going to survive this.

We didn’t choose this life. It chose us.

225 of you sent me confessions. These are my favorite.

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The Confessions That Touched Me The Most

”I love my daughter to the end of my entire being. I prayed so hard to become a mom and she is who I got and I love that I was blessed to have her, but sometimes, I really hate that this will be my life forever. I have people who encourage me to see the beauty in autism. But the life I live everyday isn’t always beautiful.

“I’m scared I don’t love my son enough. Through the trauma of the diagnosis and the daily difficulties we face I sometimes fantasize about running away. I wish my life was different.”

“The bad days are so bad. And the good days are bad too. It almost seems unreal. Why is this so hard?”

“I’m addicted to over the counter sleeping pills. My anxiety is so high over not sleeping that I have to take a sleeping pill just to fall asleep. And I don’t even care.”

“I haven’t told my boys (ages 6 and 4) that they have autism. I know it’s coming. I am terrified.”

I’m not planning for college. Instead I’m planning a way to pay for her care for the rest of her life.”

“I have to message this one because it is so dark to me and the thought scares me and breaks my heart simultaneously. I fear my son will require constant care for his whole life and I’m scared one day I may resent him for it.”

It’s all my fault. #AUTISM”

“I hate people who say it’s a blessing. Autism is a curse. My son is higher functioning, so was diagnosed later (his early symptoms were to subtle to get anyone to listen). No child should have to go to treatment all day instead of playing. I will never consider having another child, I love my kids, and EVERY DAY is a struggle for them, and us. Every time I call their names and get no response, I crumble inside.”

“I know in a weird way I should be thankful that my son is so severe that he won’t know he is different. He won’t know he is being bullied. And in a way it provides me comfort. But in a way it crushes me even more. My son doesn’t have any idea what is happening around him. How can I live with that?”

“I fake everything. I am always smiling. I am always laughing. People say I am the strongest woman they know. LIES. I am heartbroken. I love my kids. I love my husband. But I am a different person. And no one understands. I feel like a shell of the woman I used to be.”

“I was telling my best friend I don’t want to have another child because I’m scared they could have special needs or have them worse than my son (even though I want more kids more than anything!) And she said “but that’s just hard on you because you have to do a lot for him…would you change anything about him?” And I had to answer no I wouldn’t change him, but the truth is…I would. I would change EVERYTHING!

“Some of the sounds my son makes actually haunt me. I have to wear head phones at times.”

Confessions On Parenting

“I have resentment towards my child.”

Sometimes the pain makes it hard for me to even look at my daughter.”

“I relive my pregnancies trying to figure out what I did wrong.”

“I always tell my son he can do anything, that we can do anything. Sometimes I’m actually not sure if he can but we keep trying anyway. (he has proven me wrong many times)”

“I have a “sad” moment every single day about the things that my son will miss out on because of his non-verbal, severe autism. I do everything I can to help him, but it never seems like it’s enough. I allow myself one good, gut-wrenching cry a week. If I didn’t limit it, I wouldn’t be able to function. He was diagnosed 2 and a half years ago, and it hasn’t gotten easier.”

“I am jealous of parents that have kids that aren’t severe. First I was jealous of parents with normal kids. NOW I’m jealous of autistic kids that talk.”

“I’m cheating my other children.”

“Sometimes I put him in his room for an hour with the tablet and just cry by myself while I clean up the terrible messes he makes at home. I know he’s safe and I have a second to myself to just have a pity party. It’s terribly lonely. Even though my husband understands, he doesn’t truly get it. I have to worry about all the quirks, preferences, schedules, and everything else. It’s very weighing! And as much as parents to typical children say they understand and support me, it doesn’t really help. There’s no end!”

“I hate when my son doesn’t have services because I have to deal with his behavior for the whole day.”

I see no future for my child and it breaks my heart daily.

“I love my child but there are days when I really don’t like him.”

“I’m tired of all the damn therapy. I don’t know if it’s working. I think we should give up but society won’t allow it. So, we keep doing it. And there is never a break.”

“Its hard for me to reach out because feel like I won’t be accepted because my son is high functioning. I feel shunned like people won’t think I can relate because my sons disability isn’t as obvious as others. But the older he gets the more his differences are obvious to everyone around. I get “he doesn’t look like he has autism” or “he will outgrow it” and it’s frustrating explaining things because it’s not visible.”

“I let my NT 3 year old have a NUK and sleep in my bed because I have so much guilt.”

“I feel like I’m never enough. I can’t do it all but I pretend I can and it’s exhausting.”

“I spend days wondering if I can handle having this child with me until I die. I don’t think I can.”

“I am a failure because this is so much bigger than me. And I am not strong enough.”

My kid deserves a way better parent. I do everything I can and it’s never enough. He always needs more. I have nothing left to give.”

Confessions On Marriage

“I am angry at my husband because he gets to have a job. I have a college degree too and I can’t work because no one else can take care of our son.”

“I am jealous of my kids dad. He spends his time with our two younger children while I am forced to miss every event because of our autistic daughter. It’s not fair.”

I know my marriage will not survive this.”

“I hate my husband. He helps with our son but he doesn’t help me emotionally. And that’s almost worse.”

“Autism destroyed my marriage. Now I am divorced. And I know I will never meet anyone because of my son. I tried dating and the men couldn’t handle it. I am going to be alone for the rest of my life. Wait, that’s wrong. I’ll have my son.”

“I am never going to stop grieving and my husband hates me for that. And I hate him in return. I don’t understand why his heart isn’t broken.”

I think my wife is autistic too. I am surrounded by loneliness.”

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Confessions On Life

“I give up almost everyday. Actually that’s a lie I give up everyday! Sometimes as soon as I wake up.”

“I fear I won’t survive this.”

“I just gave myself the nickname….crybaby quitter.”

“I feel like I fail in every other area of my life (marriage, home, friendships, other children etc) in an attempt to parent my ASD kiddo.”

“I feel hatred and jealousy towards women who have a bunch of kids (4plus) and there all typical … I only have 2 and ones autistic . I know its terrible but it makes me sad and resentful. Always makes me wonder why my son and not theirs.”

“I killed myself as a single, working mom to get degrees to take care of them without help only to have my child with autism take away my career and I love him but I am mad at him for it.”

“I avoid taking my son to peoples houses. Not because of how hard it is in me. I wish. I’m embarrassed, and so sick of having to try to rationalize things. He pooped on my friends floor once because he didn’t like their toilet. He chews up their stuff. Drops expensive things. They don’t understand autism and I feel judged and so embarrassed.”

“I  am a preschool teacher and it’s so very hard because I see what your “neuro-typical” children can do and I feel such a huge amount of resentment and wishes of my own daughter being able to do the same things I teach every day–writing your name, etc etc.”

In the past I have contemplated suicide.”

“I see and know mother’s who drank and did drugs while they were pregnant and their kids are normal. It makes me crazy. I hate them for it.”

I secretly cry every day. My husband has no idea. He thinks I’m taking a bath over doing laundry.”

“I lost my relationship with God because of this.”

Every day is exactly the same. There are so few moments of sunshine that I can’t stand it. I need it to get easier.”

“I have a co-worker who does nothing but brag about her niece who is the same age as my daughter (5) and how she’s reading, does this and that, basically the sun shines on her ass and she’s perfect in every way. I get so heartbroken by her bragging, inside I’m dying a little bit each time and I just have these feelings of “I wish my daughter could do that.”

“Sometimes I just sit and cry because I don’t know what to do.”

“The weight of the guilt is more than I can handle.”

“My youngest has severe, nonverbal autism. My confession? Some days I am just tired of changing diapers, giving him a shower, brushing his teeth, clipping his nails, shaving his face. I’m tired of getting him dressed, tying his shoes, cutting his food into bite sized pieces. Tired of monitoring his screen time. Tired of the stimming. Tired of not being able to just run to the store when we run out of milk. Tired of not being able to stop for dinner on the way home from our other sons’ games – tired of it always being the McDonald’s drive thru and always having to tear chicken nuggets into four pieces before handing him a bag of fries and chicken pieces- half of which will end up on the floor of the suburban. The thing is — feeling tired of these things– even though I’ve been doing it all for over 19 years now- brings me guilt. I have a handful of friends who have had to bury their children. There is no greater pain than that- and what they wouldn’t give to tend to their children rather than mourn them the rest of their days…So most days, I’m good. But some days, I’m not… and the guilt is stifling.”

On Family

“My parents told me my son is spoiled and just needs to be disciplined. They blamed me and my husband because of one overnight stay with them that was “full blown Autism.” March 7th will be one year since I’ve seen or spoken to them other than an email and one family gathering. I chose my son and husband.”

“Mine is a little different because I’m not technically his mom…Mine is I was done having babies 17 years ago and I shouldn’t have to be doing this. I absolutely loathe my daughter at times for not being a mother. I’m supposed to be the Grandma that spoils them and sends them home. Instead I’m feeling all of the same things as you … I wonder how long I can honestly care for him. He’s five now and I’m already exhausted, what happens when he’s 10 or 15, etc.”

“It drives me crazy when people complain to me about their kid talking too much. Do you know who you’re talking to?! I would give anything (ANYTHING!) to have me son talk my ear off!”

“I’m terrified that my husband’s parents are going to love the ‘other’ grandchildren more than my son.”

I hate my parents and sister for not helping me. I hate listening to them talk about their ridiculous problems. If they only know that every day of my life is a war. And they don’t care to find out.”

“Before my daughter was diagnosed I was crying to my mom about how lost and heartbroken I was. She looked at me and started crying and told me ‘this was hard for her too and that she didn’t like to hear about it.’ That night I googled narcissistic personality disorder. I will never forgive her for not helping me more.’

“I have four siblings, three of which live with 10 minutes of me, and I wouldn’t trust any of them to care for our son should anything happen to us. We have a meeting with a financial planner next week, and I’m not looking forward to the conversation of who i would want to be the guardian. Can I say ‘none of them’?!”

“I hate my siblings for taking their kids for granted.”

On the Future

“Why me? Someone tell me…why me? What did I do wrong?”

“I am 5 months pregnant. I just found out I am having another boy. I am devastated because I know that autism happens less frequently in girls.”

“I will never have another child. I actually made my husband get a vasectomy. I could never do this again.”

“I hope my daughter never has to live without me, it may sound selfish, but I’d rather live with the heartache of losing her than not knowing if she is properly cared for and hurting and not able to express herself.”

I grieve over the life I should’ve had.”

“My heart breaks when I think about huge milestones that we will miss. Graduation, Prom, Senior Pictures, College, Marriage, Grandchildren. I’m never going to have any of it. I should’ve had more kids. But the fear was too great.”

I wouldn’t wish autism on my worst enemy. I cringe and get jealous and emotional when I see a “normal” kid my sons age. When I see them talk or do normal three year old things that mine should but doesn’t it stabs me like a knife inside. It kills me.”

“I don’t understand the purpose of my son’s life. I love him. He is my world. But what is he contributing to society? What is his purpose for being here?”


This is a glimpse into the private world of special needs parenting.

We aren’t all that different from parent’s of typical kids. We struggle. We laugh. We love. We survive. It isn’t always beautiful. Often it can be scary. But the world should NEVER doubt the love that we have for our kids. It is fierce.

How do we advocate for something we hate so much? I hate my son’s disability but I will travel to the end of the world to help him. I am motivated, energized, devastated and heartbroken all at the same time.

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Kacie K Photography

A Letter to My Other Son…The Sibling to A Special Needs Child

My little peanut,

Today is your fourth birthday bud. How can that be? I look at you running and jumping with your friends and it’s hard for me not to cry. You are amazing. I am so proud to be your mom. I need you to know that.

I want to tell you a few things. I know you won’t understand them now. And that’s OK. But someday, when mom is old and grey, I want you to read this letter.

I want you to know I am so unbelievably thankful that you are my son and Cooper’s brother. You need to know that. Together, the two of you have given me more joy than I ever thought was possible.

I have a secret. No one knows this. I cried the day I found out I was pregnant with you. Actual ugly tears bud. I have never been more afraid in my whole entire life.

Your brother was two and I was failing as his mother. I couldn’t fix him. I was chasing doctors and therapies and coming up short. I felt like I was failing as a wife, a friend, an employee and a mother. My world was crashing down around me.

Autism was right around the corner. Severe, nonverbal autism. The scary kind. The kind no one talked about.

I lived every single day with a dreadful feeling in my stomach. I knew the bottom was going to fall out of the perfect life I fantasized about. I could feel it happening. It was only a matter of time until we had a diagnosis.

But I was faking it and making it pal. I kept the perception up. And then I found out you were coming. It was a Saturday morning. I’d been awake all night with Coops. Your dad was at work. And I had a hunch. I peed on a stick and the thing practically screamed YOU ARE PREGNANT.

I was so scared buddy. I hadn’t slept in 2 years. My world revolved completely around your brother. Much as it does now. Not a lot has changed in that department. Hell, I think the first year of your life I nursed you in every waiting room in Duluth.

For the next 9 months I would lay awake at night when I should have been catching precious sleep googling ‘odds of having two children with autism’.

I was so scared Sawyer.

Then it was January and you were here. And, oh my God baby boy, you were perfect. You slept. You ate. You laughed. You were content.

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Photo Credit: Melanie Houle Gunderson

I want to tell you a secret.

You saved me buddy. I want you to know that. Not a lot of kids can say they saved their mom.

By the time you were born my world was 100% autism and my fierce need to help your brother. I was running myself absolutely ragged chasing therapies and help. And while that is what a mother should be doing, it was slowly taking over my entire world. I was missing all the joy of motherhood. I was simply surviving.

You reminded me that I needed to live life with my babies. You brought our family back to reality.

On the days when autism had me down. On the days when my heartbreak over your brother’s disability was more than I could handle. You were there. Laughing and smiling. Learning to crawl, walk, jump and speak. Inserting yourself into Cooper’s world too. You could always do it in a way that I never could.

You gave me all the milestones and memories that a mother should have.

And on the other hand watching you pass your older brother cognitively, socially, emotionally and physically has been crushing. You are my little reminder of what Cooper isn’t. There are days where I miss your brother so much I can’t stand it.

I think of the all times we almost downplayed your development because your brother learned to use a straw or point to his nose. Such simple things. We never meant to do that buddy. We just knew you were fine. You were thriving. Your brother wasn’t.

I want to say I am so sorry. You were born into this.  Having a brother with severe special needs has to be frustrating. There are days when the only interaction you have with Cooper is a kick in the face.

Autism is such a mystery to you. I can see it in your face. There are days where you will look at Cooper and ask him a question and he will squeal in delight. Those are the good moments. And I know they are few and far between.

I want to say I am sorry that this is happening. You are the most social kid that I know. You come to me to meet those needs because your brother ignores you. You demand me to play with you.

Part of me wishes you didn’t know the word ‘Autism.’ And then a part of me is thankful that you know hard times. That you know sadness and disabilities and differences. I feel like it’s almost a gift Cooper has given to us. You know struggles kiddo.

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Photo Credit: Kacie K Photography

I feel like I’ve missed so much of your life.

Last month I forgot the year you were born. We were at the doctor having your well-child visit and the receptionist asked me your birth date. I said January 20.  And she said ‘year?’ I just stared at her. I looked at you. I looked at her. And I burst into tears. I truly didn’t know the year you were born.

Your daddy giggled about my forgetful brain and attributed it to lack of sleep.

I think of the times I shushed your beautiful chatter and nonstop questions because I had been listening to your brother scream for hours.

What kind of mother does that? But I know that you will understand. You will be quiet. Your brother won’t.

The other day you grabbed my face during a social worker visit and looked right into my eyes and said, ‘Can we talk about Sawyer for a little bit mama?’ I will never forget the way you held my face with both of your chubby hands and asked so sweetly Sawyer. And I told you we would after the social worker left. We would talk about Sawyer. Only we didn’t because your brother needed me.

I want you to know I am so sorry for that moment that you will never remember.

I want to thank you sweet boy. Our life is hard. It is even scary sometimes. It’s exhausting. And you get the leftover shreds of a mother after autism is done. And I am sorry.

Some days I think I am creating a monster because I spoil you so terribly. You see your brother doing so many things that you can’t. So, I give into you all the time. I hold you and coddle you. I let you stay up later at night so we can have a few minutes without autism.

I am so sorry that 5 times a day I say to you…’because he’s autistic.’ There are days when I swear I’ve failed you.

Or the times I told you that you had to walk because I had to carry your brother. It started when you were 2. Your brother was 4. You would scream at my feet with those little arms in the air and your brother would kick at you from my arms. We would be in the midst of autism meltdown so fierce that I would have to walk and hope that you would follow.

Those moments are burned in my brain buddy. Oh the guilt.

There are moments when I will look at you and wonder if you will take care of your brother after I am gone. Will you love him like I do? Will you shave his face? Will you dress him? Will you change his diaper if needed? Will he live with you?

How can I ask you that? I want you to go to college. Get married. Have babies. But part of me has this favor to ask of you. I need you to love your brother after I am gone. I need you to protect him and while I don’t know what that looks like yet I just need to say it out loud.

My worry about Cooper’s future is unbelievable.

Someday, mommy and daddy need to talk to you about the future. But not today.

Today you are 4 sweet boy and we are celebrating everything that is you. Today Autism is not the priority.

I am watching you play and thinking about all the things I want to teach you.

I want to teach you kindness, love and patience. I want to teach you that disabilities are not scary. I want you to fight for what is right. I want you to fight for your brother.

But most of all I want you to be happy doing whatever it is you want to do and to have no animosity against your brother. I want you to accept Cooper and love him and truly see all the joy he brings to our lives. I want you to be brothers in every essence of the word honey.

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Photo Credit: Kacie K Photography

A Day In Cooper’s Life: Autism in Pictures

I am very vocal about the stress that goes hand and hand with being an autism parent. It’s a topic that isn’t always talked about. I want to change that.

Autism is hard. Unbelievably hard. I have post-traumatic stress from it.

For one it’s often extremely loud. For me it’s Cooper’s screeches mixed in with the constant sounds coming from his devices. And my little guy loves it LOUD. Really LOUD. I’ve tried covering the speakers with tape. He rips it off. I’ve tried headphones. He refuses to wear them.

So, I say, ‘turn that down buddy’ 547 times a day. It’s a lot. I remember saying at Cooper’s 3 year old check-up that technology is ruling my life. If I had only known the future. 

And for all you parent’s of typical kiddos…trust me when I say I am not happy about his technology obsession. It’s his life though.

Autism is often repetitive. Their actions. Their sounds. People with autism love routine.

Autism can be very messy. It can be destructive. It can even be dangerous.

Autism makes me feel so out of control that I want to scream.

His need for everything to be exactly the same in a changing, crazy world is almost impossible.

And I am the mom. The caregiver. I am here to keep him safe. Loved. And at times I don’t know how to do it all. And I often wonder at what cost.

Many times throughout the day I feel like I am walking on eggshells. I will do anything to avoid a meltdown.

Why?

Because the meltdowns are extreme. They are loud and can even be scary. Cooper will beat his head on a wall. Or even the floor. This is called self-injurious behavior and is common for nonverbal people. They can’t orally communicate what they are feeling on the inside so they hurt themselves on the outside.

It’s very, very hard to see. It makes me feel sick when I see him hurting himself. So, as you can imagine, I do anything to avoid it.

But what if I don’t always know the triggers? Or if the triggers change daily. It’s like I am playing a game with the highest stakes and I don’t know the rules. And my partner isn’t playing fair.

It’s trying to make every day the same as the day before. IF I do this the day will be fine. IF there are no hiccups. No late buses. IF we aren’t out of his favorite foods. Or favorite drinks. Or IF the WiFi isn’t out.

This is why I have 4 Kindles charging at all times. This is why technology rules our lives.

And this is why Cooper gets first dibs on what is playing on every television in the house. And why I give into his demands that every food MUST be in a bowl. And if we use a plate with sections then every section MUST have food in it.

This is why I always have milk and Capri Suns. And his snacks.

This all sounds crazy. Right? Like legit crazy. I know it does. It sounds unhealthy for me. It sounds like I am controlled by Autism.

Ding, Ding, Ding.

Autism controls every aspect of my life.

It controlled my marriage. It dictates how I parent. And my day. And my attitude. It controls my sleep.  It controls my job. And my plans. And every single thing I do in a day.

This is so much more then parenting. This is being an autism parent.

It makes me feel completely out of control.

Then add in raising a typical 3 year old along side this chaos.

Cooper’s life is on repeat every single day. We need it to be that way. He needs it to be that way.

I wanted to share with ya’ll what Cooper’s home days ‘look’ like. He has a routine. A routine that is so long and drawn out that one might not even notice that it is happening. I notice.

I am pretty sure my sweet boy has worn a path in my carpet.

He goes from his destroyed room where The Good Dinosaur is playing on his tv, to my room where he tears apart my bed, to his brother’s room where he tears apart the bed, to the couch, to the kitchen table with all of his ‘things’, to the basement stairs where he has a snack, to the toy room. And repeat. He has a Kindle with him at all times.

This will go on for a whole entire day. From 4:30 am to 8:30 at night. The only changes would be meal time, bath time or if we go outside or leave the house.

Here is Cooper’s life in pictures.

Imagine this on constant repeat. We try not to get in his way. But at times doors will have locks placed on them. Mostly for my sanity. I can’t clean every single room. I can’t make every single bed.

But, when I remove one of his stops I will notice that he gets extremely anxious.

This is Cooper’s room. He first tears his bed apart. He will spend 15 or so minutes doing this.

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Then he goes to my room and tears my bed apart. All the bedding, and any other ‘free’ to grab object gets placed into a pile in the corner of my room.

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Onto his brother’s room where he will actually dismantle the bed.

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Then to the living room where he will demand a show be put on the tv.  He sits on the couch. It doesn’t matter who is sitting there. He is Sheldon Cooper. This is his spot.

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Next stop is the kitchen table. He brings all of his items with him. Blankets, DVD’s, pictures. He always has a drink and snack and will go absolutely bonkers if we deny him food.  He arranges every item with care and precision. 

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He then stops by our technology station. 4 kindles. Always charging. He will typically switch out his Kindle for a different one on each pass through.

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In the basement he likes to destroy the toy room. I can always hear it happening. And I let it happen. This is an activity for him. He is playing. My wall is wrecked though. Sigh.

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Then up the stairs he comes and goes back to his room. This is our life. Every. Single. Day.

 

 

The Uphill Battle of Being a Caregiver

img_6835I cried on my way to work this morning. Not because I was sad.  I cried because being Cooper’s mom turns me into someone I don’t like. I feel trapped. And alone. And so utterly overwhelmed. And like I need to make threats to make his life easier.

I don’t ever feel like I’m doing enough. Or the right thing.

The special education system is a constant uphill fight with a 200 lb pack on your back and no food or water. Nothing comes easy. Not one part of it. And I feel like an animal that has been caged into a corner to protect its kid and I need to fight my way out.

Dramatic? Maybe. But it’s the truth. Not one change or decision in Cooper’s special education life has come easy. Every part is 23 phone calls, 17 emails, 5 people, a dozen dead ends, and then picking yourself up and starting over.

This is the part of being a caregiver that is the hardest. Fighting for services. Fighting for equal and fair rights. Fighting for a sense of normalcy.

And it’s not always the people. We have dozens of people in Cooper’s life that are amazing. They are working to help him and give him the best options around. I think it’s more the system. The system is broken.

So what happened.

Cooper’s bus driver pulled up this morning and greeted us with a smile. He is the nicest man ever. He told me that Cooper still doesn’t have a ride home. He’s like, ‘I can take him. I’ve asked the officer every day if I should bring Cooper home and I get no response.’ He’s like, ‘I obviously won’t leave him but you should call in and see what’s going on.’

This came after Cooper woke me up at 4:45 am. And after I had a standoff with Sawyer over his breakfast that involved a time out, a thrown remote and a brotherly brawl.  And after I got Cooper dressed for his school pictures knowing that he probably won’t take one. And won’t be in the year book. And after I wrestled Cooper’s kindle out of his strong, sticky hands and after he gave me a kick to the stomach so on point it took my breath away. And after we waited in the front yard for the bus for 12 minutes because it was late. And no one on this earth will ever understand what a bus being late does to an autistic kid.

So, when the bus driver told me that Cooper STILL didn’t have a ride home after I’ve made 7 phone calls and sent 3 emails, and filled out a form, all starting two weeks ago, I knew I was going to lose my shit.

I piled Sawyer in the car, put a movie on, and made the call. And was promptly transferred 3 times after explaining the situation 3 times. And I was friendly all three time. I know that being nice and sweet will get me farther than being a bitch. I’m not an idiot.

It just doesn’t make sense to me.

My kid, a student in the school district, needs a bus ride home. He’s not a gremlin. He doesn’t need to be levitated. Or have a limo bring him home. He needs the damn bus to bring him home on Tuesday’s and Thursdays.

Yes, I called 2 weeks ago. Yes, I called a week ago. Yes, I filled out the form. Mind you this form is only needed for special education students. Yes, the form was signed by his case worker. I didn’t even know we had a case worker at school. Yes, the form was given to his teacher. Yes, I called three times last week and yesterday. Yes, the bus driver confirmed to me that he can bring Cooper home.

Her answer, ‘we still do not have transportation home for your son ma’am.

And then I lost it. I demanded to know why this is so difficult.  I’ve been calling for 2 weeks. I’ve spoke to a dozen people. I told her I’d go to the damn school board if my kid didn’t have a bus ride home today. I can’t make one more phone call about this or ask one more time. He is a kid that needs a bus. Put him on a bus.

In my head I was thinking I will go so far up the school board ladder I will be camping in the damn president’s front yard. Try me lady. I cannot leave work early again to pick up Cooper from school. I have a job. That I’m going to lose.  I just can’t. I also need to him to be on some sort of set schedule. This needs to happen. Please, please, please get my kid on a bus home. Please, help me. Wah, Wah, Wah.

And my voice broke.

As I hung up she reassured me she’d take care of it immediately.

And then I dropped Sawyer off at daycare. He clung to me and screamed and cried and said he missed me and wanted 7 more hugs and 2 kisses. His words, not mine. I felt terrible.

And I got in my truck and completely lost it.

Why? I want to know why it’s so hard for these kids. I want to know why I have to become absolutely batshit crazy to get any sort of response. It just doesn’t make sense to me.

I am a calm person. I am a problem solver. I am patient. I love my son. I love his people. So why?

I had a phone call within 30 minutes saying that Cooper’s transportation was all set up and good to go.

And that’s great. So happy. So relieved.

But why does it need to get to this level?

Why does being his mom bring me to this level of crazy that I didn’t even know was possible. With Sawyer I feel like it’s all so easy. Good things happen for him. He’s an easy going kid and he’s popular. He’s happy. He loves his daycare. He will go to kindergarten. He will play sports. He will make friends.

With Cooper it’s just different. And that’s so not fair. His life is hard. He is hard. Being his mom is hard. And the system is hard.

The system is broken for caregivers. I’m not saying I know how to fix it…but I know there needs to be a change.

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My Greatest Pity Party

b5ea6de981d4993770079a5ea663100cIs Cooper my greatest pity party?

Such an interesting question. It was said to me the other day. In anger of course, but there was something behind it. It had some legs on it.

And it truly got me thinking.

Is Cooper my greatest pity party? Hhhmmm.

I am very open that I am heartbroken over Cooper’s autism. It’s gotten better after almost 5 years but, nevertheless, the heartbreak is still there. I am also a tad bit bitter over how my life is different. Which is the part that a lot of people don’t share. But it’s the truth and why lie about it.

I know I don’t ask for help unless I absolutely need it. But in saying that I am thankful for every therapy session, teacher, aide, driver, friend and family member that cares about Cooper. They weren’t joking when they said it takes a village to raise a child. With Cooper it is a village the size of Chicago. Team Super Cooper is stacked. And I know every person wants the best for him.

I also know I don’t share a lot with people close to me. That’s a fact and probably won’t change. I got sick of never getting the reaction I had hoped for. And I am not blaming the people in my life…I’m saying I didn’t know the reaction that I wanted. It got exhausting.

I know that I tirelessly fight to get Cooper the best care. That won’t change ever. I could put him in front of a tv and let him pee in his pants and eat candy and have no stimulation with the outside world. Who would stop me? Honestly. But I won’t do that. I love him to much. So does his team. And we are going to keep fighting and trying.

But pack to the pity. The greatest pity party. Or as I have started to refer to it as….the GPP.

Do I sit around begging for pity? Do I want people to feel bad for me? For Cooper? For our family?

Hell no. The answer is no. So I apologize if it’s coming off that way. I feel like I hold half the stuff back because I don’t want pity.

My stubborn ass refused to get a diagnosis until Cooper was three because I didn’t want pity. I didn’t want help. I thought I could fix him and do it all by myself. I thought if I kept him and us hidden away he wouldn’t have autism.

I don’t tell people half the challenges that Cooper’s autism brings. The enemas, the whining, the exhaustion, the money spent, the time spent. Nope.

So, I say no. Not in the slightest.

I have chosen to share my life with the blogging world because I know I am not alone in what I feel. I want other moms to know it’s okay to be sad. It’s okay to hate the hand that was dealt to you. And then, get up, and laugh and bring your kid to some damn therapy.

What else.

I don’t feel that autism is a gift. I know my life is different. I know my life is harder than some. Not most, but some.

I know that my list of unknowns about Cooper’s future FAR outweighs the certainties.

I know that I choose honesty. And to be humble and caring to others that are struggling. I know that I can laugh at myself and laugh at Cooper.

I know that I choose to give support to other people.

And I choose to accept the help that is given to me. (I’m working on this one. I’m no saint.)

And I know that every single damn day I wake up with a smile ready to take on autism. It’s a conscious decision that I made. I spent many a days and nights crying. I don’t do that anymore. I chose to TRY and be happy. I also made a choice to keep fighting for Cooper and for him to get the best care in the world.

And lastly, I decided somewhere along the line that I will have to sacrifice my needs and wants for that. Does that make me a saint? Nope. That makes me Cooper’s mom.

Every day I wake up happy. It’s a gift I guess. And thankfully that gift was passed onto Cooper. Every single day is a new day for him. It’s this joy I can’t even describe. Imagine not seeing someone you love for months. And then you wake up (at 4 am) and you chatter to yourself. And then over walks the person you love more than anyone else in the world. That is Cooper every single morning when he sees me.

His face lights up he jumps and flaps and squeals. It’s kinda the best feeling ever. Its hard to even be mad about the 4 am wake up call. And then you get to snuggle for an hour in bed.

I get down about Cooper. There is no denying that. There are times when I think I can’t do this. That I don’t want to do this. That I don’t want an autistic kid. I say things out loud that should never be said out loud.  And I will ugly cry because my kid didn’t take a school picture. And he can’t go to a birthday party. And he can’t, and he can’t, and he can’t.

And, I don’t think Cooper will ever talk. I am so far past that it’s ridiculous.

But do I want your pity?

I honestly laid in bed thinking about it last night. And on my walk to work. And as I sit here right now.

Such a strong statement.

The answer is no.

So, in case you were wondering if that autism parent down the road wants your pity…the answer is no. Just be supportive. Go visit. Bring wine or whiskey. And dinner. And bitch about your lives. They will love you.

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When Do We Give Up?

I gave up yesterday. The details really don’t matter I guess. All that matters is I was pushed to that place where I didn’t recognize myself. 

I’m fighting with Cooper’s school and for the first time I saw that they are looking at him as a number and not a child. All the horror stories I’ve read about schools and special needs kids happened. I spent hours talking to people that have never met Cooper….nor do they really care about his best interest. Cooper is a special child with special needs. 

It got nasty. I pulled all the ammunition I could think of.  And it took all day and it’s still going. I think I’m going to lose. For the first time I can honestly say Cooper is not getting what’s best for him. 

And then I lost Cooper. Funny how I just posted about that. I knew he was safe but I couldn’t actually find him. And the transportation company lied to me. They outright lied. 

I yelled at more people yesterday than I have in my whole entire life. It wasn’t me. I was this crazy version of myself. 

And then the hardest part. Cooper had the most epic of tantrums at Dairy Queen over a melted ice cream sandwich. His little body turned into a 50 pound bag of jello. It lasted 10 minutes and it was loud and he was close to injuring himself. And me. People stared at me. At him. I could not get control. I couldn’t hold his body or calm his screaming. 

It was the perfect storm. 

It was the worst day. 

So, on the ride home, as Cooper watched his iPad, I gave up. 

I started to really feel sorry for myself. As my friend would say….’let the pity party begin.’ 

I started to ask myself why I was doing all this. Why was I fighting so hard. 

I work full time. I have another child. I have a life. I can’t spend all day on the phone arguing over an IEP. Or calling therapists and bus companies. 

I started to really fume. 

Here is the question I couldn’t get out of my head…..’does it really matter?’ 

Does it matter if I fight for Cooper? Does the therapy matter? Or am I just fighting to fight? 

At this point should I just accept the situation and stop kiling myself. 

I would turn myself inside out for him. But…should I have too?

I only ask because this could be it. He might never talk. So why fight for more speech therapy. Why fight for more of anything. 

Maybe we should just stop and let him be. 

Maybe I would be happier. Maybe he would be happier. 

I’m not saying we shouldn’t fight for our children. But the level of time that goes into Cooper’s care is unbelievable. 

So yes, yesterday I was in a low, low spot. It was ugly. I will eventually dig out and keep fighting. Because that’s what moms do. I would be lying though if I said thequestion  wasn’t still nagging me…

Maybe I would be happier if I stopped fighting so hard…..