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

An Open Letter to the Friend I Lost Along the Way

I am sitting here thinking about our relationship. And about how much I love you. And how I rarely see you. We joke that it’s because life is so busy. We have jobs and babies.

We say that this month we will finally find the time to get together. And how someday soon we will have more time. One of these days we will actually get together and do something.

I’m not sure if that’s entirely true though…at least not for me. We are different. We are friends. We are practically family. I love you and your babies. But we are different. And we dance around it like it’s not true.

Like the differences aren’t the white elephant in the room.

I want to say I am sorry. I am sorry that I don’t make plans with you. I am sorry that I won’t commit to doing anything. And mostly I am sorry that I always cancel.

This morning I woke up at 3:07 am with Cooper. This is common in my world. Some days are worse than others. There are mornings where he kicks me. Mornings where I have to physically restrain his 60 pound body.

There are moments where I am so close to giving up its scary. And other mornings where I don’t know how I’ll make it through the day.

I could tell you all this but I don’t. It’s not believable. I sound like a broke record. I feel like I am whining.

So, I cancel. Or, even worse, I refuse to commit to plans. I do this because every day in my world is extreme and different.  And I need you to know the weight that I carry is bigger than me. It’s bigger than our friendship. And it’s completely out of my control.

I feel the strain between us too. God I feel it. I miss you. I miss us. But most of all I miss the friend that I used to be.

I know that I am not the woman you remember. I am different. I used to be so much fun. I was up for anything.

I didn’t fit into your world anymore. I would like to think that it evolved slowly over time. But that is not true. It happened all at once.

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Photo Credit: Melanie Houle Gunderson

It happened the day Cooper was born. Before that we were the same. College, wedding preparations, baby preparations. I was you. You were me. We were young. We were blissful. I was completely and utterly naïve to the hurricane force that was going to soon control my life.

Then wham. I was different. I had a label. I was an autism parent. I immediately carried it on my shoulders. The weight was more than I could handle at times.

When our children were younger it was one thing. My baby didn’t sleep. Yours did.  Mine never stopped crying. Mine was chronically ill with ear infections and constipation. I was tired. I couldn’t speak about anything besides how my child was NOT autistic.

I saw how you started to miss me. I saw how I started to slip away. Don’t think I didn’t know it was happening. I was part of every second of it.

But I could pretend then. We could pretend. Our children were infants. And every mother we knew was exhausted. So this was going to be fine.

We would sneak away for a glass of wine and laugh about motherhood. We’d talk about the vacations we would take when they were older.

Then, the differences started to show in my child. He was no longer just a bad sleeper or a difficult baby. This was more serious. The differences between our children hung in the air when I was with you.

We would trade stories of other mothers we knew who went through the same thing…and it turned out fine. They were fine. I was going to be fine. This was going to be fine.

You’d find a blog post or a news article about a late talker and send it my way. We both agreed it wasn’t autism.

Then, suddenly, I had a diagnosis.

My life quickly became doctors, therapies and IEP’s. I couldn’t relate to you anymore. And you most definitely couldn’t relate to me.

It was like I was in a movie. I watched myself turn invisible right before your eyes. I felt out-of-place. I felt irrelevant. But most of all I felt jealous.

My child was different. Yours was not. Your child met milestones. Mine did not. Your child said her first word. Mine did not.  Mine would scream and hit his head in frustration.  Yours had a conversation with me.

You potty trained your child in a month. I frantically searched for size 7 diapers.

And then I completely slipped away into this new world.

I stopped calling. I withdrew.

That is the blatant truth. We can dance around it. You can say that you are OK with Cooper. I hear it all the time from friends and family. I know you love him. We all do.

But my son is different from yours.

And I want to say that I am so sorry.

It’s truly not you. You are a wonderful friend. And I love you. But I slipped away and I don’t know how to come back.

I am sorry we don’t come and visit. The preparations for a visit to someone’s house are epic. Do you have a fence? Do you have WiFi? Pets? Do you care about messes? The list goes on. Snacks? Sippy cups? Milk? In a sense I still have a newborn. A 60 pound newborn that can do some serious damage.

And I believe it when you say that you love Cooper. You don’t mind the screaming and the pacing.

But I do friend. I care. I care about parenting in front of you. I care that I can’t sit and talk to you because of Cooper. I care that I wake up at 3:15 am. I care that I got poop on your floor while changing my 6-year-old.

In the back of my mind I wonder how long you will hang on. When will it be too much?

I want you to know that I wake up every day happy and with the best of intentions. And by the end of the day sometimes I can’t see straight. It takes all my strength to respond to a day old text message from you.

I will go on Facebook and see that you signed your daughter up for gymnastics. Or maybe it’s t-ball this time. I guess whatever activity a 6-year-old does these days.

I will feel the pain in my stomach. I am over here researching special needs strollers for children. I am trying to figure out how I am going to pay for it. And how I am going to be strong enough to bring it out in public for the first time. How do I find one that won’t stand out? Or make us look too different.

What you are doing isn’t wrong friend. It’s amazing. I am so happy for. Your children are beautiful. You are beautiful.

I’m just not there.

I need you to forgive me.

I am letting you off the hook friend. Autism isn’t your world. It is mine.

I want to thank you for standing by me. And I want to ask you to not give up on me. Your children are going to continue to grow and thrive. There are times where I think Cooper and I will be in the same exact spot.

Please remember us. We are trying so hard to fit into your world.

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Photo Credit: Kacie K Photography

9 Big Mistakes Parents of Autistic Kids Can Avoid

I often think of my son’s autism as a journey. A journey with many, many steep mountains. And holes and cliffs. And of course it’s slippery.  The hills have jagged rocks and most of the time I feel like I am hanging on for dear life. There is no safety harness or map. I typically don’t know if I am even going in the right direction. And perhaps at times I am going backwards.

It’s just me against this damn mountain.  And it feels like there is more bad weather than good. I spend days doubting myself. The nights are worse.  I doubt my progress. I doubt if I will make it to the finish line. And even worse, most days I wonder if there even is a finish line.

Then something amazing will happen. A moment so magical it’s hard to even put it into words. The sun will come out. And I will get the strength to keep going. To keep fighting the fight. That is autism to me.

It’s a life of ups and downs.

The journey is long my friends and oh, so unique. My journey is different than yours.

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I would say that right now I am in the middle of my autism journey. I am through most of the hard stuff. I am past the diagnosis. I am involved in the school district. We have our IEP. I am getting county and state services. Fingers crossed when I say this but I think that maybe, just maybe, I am past the survival part. The fight or flight part.

I am three years into a diagnosis. I am settling in. My house is Cooper proof. Everyone in my life knows I have an autistic son. I am headed towards acceptance.

There are times when I can almost breathe. I joined a gym. I feel like I am becoming human again. I am no longer invisible. I blog about my journey. I am helping other parents. And I love that part.

These are all great things.

In saying all that I often think about my journey. And the mistakes I made.

Maybe ‘mistakes’ is too harsh. But I surely stumbled a lot. And Cooper’s dad and I did it mostly by ourselves for the first 5 years. And in doing that I feel like I have learned so much about myself.

Here are the 9 things that tripped me up on my Autism journey:

I waited.

I waited for Cooper to get older. I waited for him to be 1. And then 2. And then 3.  I waited because no one believed me at his young age. But I knew. So, I waited for resources. I waited for someone to tell me what to do. I waited to get a diagnosis. I waited to get help from the county. I waited to get services. I kept thinking if I waited he would eventually snap out of it. Or improve. I truly believed that in my heart. And I felt so much guilt. I felt that by acknowledging Autism as a possibility I was failing my son. And that I had failed as a mom. Now I know that is ridiculous. Get help. The sooner you get intervention the better.

I listened to other people.

All of the people in your life have opinions. And most of them come from a good, loving place. They will tell you stories. They will observe your child and tell you what they think. Some good and some bad. I want to say that your neighbor is not a doctor. And your aunt is not a psychologist. They cannot diagnosis autism. Or say a child is NOT autistic. I’ve heard it all though.  There is a saying that goes, ‘We all eat lies when our heart is hungry.” I think about that a lot. I was so desperate for my son NOT to have autism that I believed everything that people told me. I was told that boys are late bloomers. I was told that boys are late talkers. I was told that everybody eventually talks. I listened to every story that was told to me, emailed to me, or shared on social media. Trust your gut. I learned to do that and it changed my life. When it comes to Cooper my instinct is always right.

I tried and put way too much time and money into ‘gimmicks.’

Child cured from autism when parents removed gluten, casein and dairy! Or, nonverbal child starts speaking weeks after starting Fish Oil Supplements.  You will hear about these miracle cures. I tried ALL OF IT my friends. At different times I believed my son was autistic because his tummy was messed up. I thought if I fixed that I could fix him. I had a crisis social worker tell me that if going gluten free cures your child’s autism then they weren’t autistic to start out with. I’ve held onto that. But oh my good lord the money I spent. The time I spent researching. Buying books. And the time I spent trying to get my child with severe food aversions to eat new, creative, gluten free foods. I think I hid the fish oil in every type of juice. These miracle cures are really, really frustrating because they most likely won’t work for your kiddo. And you will feel like a failure all over again. They bring false hope. To this day I shut down when someone tells me about a friends sisters son that was cured. False hope is brutal.  I even tried bringing Cooper to a healer to have his Chakras realigned. Not bashing healers here (Or parents that go gluten free)…I am laughing at myself because my son refuses to sit or be touched by strangers. I spent $150 on a healer that’s sole purpose is to touch the child. I failed.

I felt guilty for using Autism resources.

In the state of Minnesota every child with the diagnosis of Autism qualifies for Medical Assistance. If the parent’s make too much money then they qualify for Medical Assistance-TEFRA where they pay a parental fee. Full-blown Autism therapies can cost upwards of $200,000 a year. Yes, you read that right. And, furthermore, most autism programs will only accept a child if they are on Medical Assistance. Like Fraser or the Minnesota Autism Center. I can’t even tell you the guilt I felt for having Cooper on medical Assistance. I felt like I was a user of the system. I felt dirty. I felt poor. I felt embarrassed. Cooper’s dad and I wanted to keep it a secret. This is absolutely ridiculous. Our kiddos need help. The help is insanely expensive. TAKE THE HELP. We waited to get it. That was silly. We are still paying for therapies from 3 years ago. And don’t feel guilty. The money is out there to help parents like us. Use it my friends. Keep your sanity.

I was afraid of the village.

When your child is diagnosed with Autism things start to happen. It feels like something huge is being set into motion and your are slowly losing control. The school district gets notified. The county gets notified. Your child starts having more therapies. More doctors. You add in more and more people to your inner circle. Many of the appointments are in your own home. It feels weird. You have to repeat the story of your vaginal birth to complete strangers.  It feels uncomfortable. I fought getting a social worker until a year ago because I didn’t want to let the county into my life. It made me really uncomfortable. That was so silly. Once I did that a world of resources opened up to us. Grants, waivers, respite, communication devices, free diapers to name a few. I would have never known about these things if I didn’t open myself up to the village. I counted today in my head that Cooper has 25 different people that have a direct impact on him and his care. That’s ridiculous. But it’s also saved his life. Let the village in my friends. It will feel weird at first. Almost like you are losing control. But do it. Build the village that will surround, protect and advocate for your child.

I didn’t speak up.

This one is tough and I think it comes with time. At some point in your journey your skin will get incredibly thick. You will feel or see something that doesn’t seem right. You learn to ask lots of questions. You learn to force communication. You will learn to speak up. For example, not every teacher or therapist or doctor will be the right fit for your child. This was a hard one for me to accept.  I remember a time when Cooper was receiving private speech therapy. I loved Cooper’s therapist.  I started a friendship with her. But in saying that, she was not the right fit for my autistic child. Not every person will bond with you or your child. Be loud about this. Ask for different teachers if needed. Make noise. Find the right people.  I also remember another time when I had to demand an x-ray for my son’s stomach. The doctor said he was fine during the appointment. I walked out. Then I walked back in and said no. I want an x-ray. And I got one. And I was right. His stomach was terribly messed up. Speaking up is really hard and uncomfortable. Become a mama or a daddy bear. Fight for what is right for your kid.

I didn’t ask for help.

‘I never knew motherhood was going to be so hard for you.’ I read that somewhere. Or maybe I heard it from a friend, I can’t remember, it’s been too long. Anyhow, it’s mean and it makes me laugh. Raising Cooper as a newborn and toddler was so unbelievably hard. I still have PTSD from it. I felt the pressure to do it all by myself. I was his mother. His dad and I didn’t need any help. I should’ve asked for more help. It’s out there friends. Reach for it.

I isolated myself.

I pulled away from friends and family who had kids around cooper’s age. I severed friendships. I skipped family events. I couldn’t bring myself to be around them. It physically hurt me to see babies the same age. Hearing about their milestones made me feel sick. And for others to ask question about Cooper. I often felt like I should lie. If I didn’t it would just prompt weird looks or the ‘lies.’ I couldn’t figure out why my baby crying all the time. The other parents seemed so relaxed. Why was I covered in sweat and chasing my child?  At times I still avoid his school. Seeing his peers is more than I can handle. This is silly and I am working through it. Friends and family should be the people we turn too when we are in crisis. But I did not. And I have some pretty big regrets around this one. Isolation makes everything worse.

I beat myself up.

I put way too much pressure on myself friends. I should’ve grieved but I thought by grieving I was giving up on my son. Or being a bad mom. All false. I also would blame myself. I must have done something wrong. I failed. Or at times I felt and still feel like I am not doing enough. There is no instruction manual that comes with being an autism parent. You will figure this out on your own just like I did. And you will do amazing. And eventually, like me, you will help others. It takes time though. Get through the first part of the journey. The big, steep mountains that feel almost impossible to climb. And don’t ever beat yourself up for feeling a certain way. You are doing the best that you can for your child all while being a parent with very real human emotions. Give yourself time. You’ll get through this. And I can tell you that the bottom of the mountain feels pretty good so far.

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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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I Can Say He’s Severely Autistic But No One Else Can

img_7829Yesterday we had a meeting with Cooper’s social worker. I am aggressively going for more services or as the state calls it…emergency services. It took me precisely 3 strongly worded emails and 2 phone calls (1 where I sounded a bit crazy) to get a social worker in my home to evaluate Cooper. Not too bad.

There is help out there. I need it. And I am demanding it.

As I prepared for the in-home evaluation I typed up a list of Cooper behaviors. Let me note that the county doesn’t require Cooper to be at the evaluation. That seems so odd to me. He is the child in question. I wanted him seen.

So, I made the appointment during the challenging hours when he boards the bus. It was strategic.I wanted the social worker to meet the real Cooper.

The whole evaluation process is a very surreal experience. Cooper is 6. This is probably his 30th evaluation. Or assessment. Typically they ask questions about his birth, development, IQ, services, etc. And typically as a mom I would sugar coat my answers. My child was fine. We were fine. This was going to be fine.

That’s how I looked at it.That was the old me. No more.

The assessments are rather uncomfortable and it is hard to convey everything in a 60 minute appointment. So I wrote up my own notes. I felt like a traitor. I felt gross. And sad. And dirty. And negative. And like a bad mom. It wasn’t a good feeling.

And then the doubt kicked in. Maybe I was overreacting. Maybe Cooper wasn’t that aggressive. I immediately doubted myself. There were other parents that had it harder. Maybe it was me. I need to be more patient. More loving. The list goes on.

Then I estimated what his care will cost out of pocket for the next year. The  number kept getting larger. I started to panic a little bit. What if I don’t get more help. What if his dad and I have to do this on our own. I will speak for myself and say that I will probably lose it.  As I added up all of the PCA care, door alarms, tracking device, fence, stroller, high chair, therapies, etc. the number totaled $35,000.

Let me be clear that I am not rich. This number would come out of our pocket. Or we would live without need services and we would all suffer through.

I slept terribly the night before. I was so nervous.

The evaluation went exactly how I expected it to go. Cooper ran, rolled, hit his head, cried, screamed, fought his dad and I, kicked me in the legs and stomach. And boarded the bus.

His social worker said something that will stick with me for the rest of my life.

‘Cooper is one of the more severe cases of autism I have seen and I don’t know how you are caring for him so well.’

That crushed me.

I can say that. His dad can say that. But I don’t want anyone else to say that. That makes it real.

I was pretty angry at first. It felt like such a harsh thing to say. ‘Most severe cases.’ Sigh.I wanted to say to him that I am not a bad mother. But he already knew that I guess.

I should have felt relieved. Right? Everything I was saying was true. The life I am living is hard. Someone saw it. My hard life was acknowledged. I was given a pat on the back.

But I felt even worse.

There was no fixing his ‘severe autism.’ Now we were talking about managing his care. That is heavy. And depressing.

At the end of the day when Cooper got off the bus I almost felt nervous. I had said all of these horrible things about him. He hits me. He screams. He’s nonverbal. He is so challenging. I felt like a traitor to my baby. I felt like he was going to know all the horrible things I had said.

I felt so guilty.

And then he bounded off the bus and ran up to me and hugged me. And immediately ate snow of my boots. And giggled.

Same kid. My kid. We were fine.

I still feel terrible though. I am in a waiting period where I wait to hear about our case. If I get denied I have to appeal it. Month after month I can appeal.

This excruciating waiting period is all too real for Special Needs Parents. We are always waiting for something I tell ya. We wait for milestones. A diagnosis. Help. Hope. Equal rights. We wait. Always waiting.

I am scared about Cooper’s future. Knowing that it is more than I can handle is a lot of weight on my shoulders.

Here are the notes that I typed up for his social worker.


img_7828Cooper has reached the point in his development where he needs constant supervision. In a sense he is like a 6 month old 6 year old. He can’t communicate and really struggles to follow directions or be present in any situation. He is nonverbal, not potty trained and is severely autistic. He can no longer go to stores due to safety concerns. He needs a constant regimented schedule. He has started hitting and kicking his mom, brother, pets and peers. He has no ‘off’ switch or sense of fear. As his mother I am extremely worried about him wandering off or getting injured in our home. His father and I also feel exhausted and completely worn down by Cooper’s care. It is constant and getting to be more and more every week as new behaviors develop. We also do not feel comfortable sending him away for respite care. He is a 6 year old boy and would be so frightened. Here is a list of his current behaviors and care that he is receiving from us.

Health and Safety

  • Violent-Kicking, hitting, pushing. This is towards me specially but also our pets and his brother. My legs are covered in bruises. Also black eyes from head thrashing. His brother is often bruised and hurt.
  • Oral issues: Putting objects in his mouth. Batteries, Legos, toys, tinsel, string, glass, hair, paper. We have found many objects in his stool. I have to be constantly sweeping his mouth for objects. Also watching the floor for small objects.
  • Completely nonverbal.
  • Self-injurious behavior-Head hitting and banging.
  • Knocking over lamps.
  • Putting objects in the outlets. Forcing cords into the outlets.
  • Putting cords into his mouth. He was electrocuted from putting the end of a cord in his mouth.
  • Climbing-Tables, couches, cabinets, fridge.
  • Knives and scissors. He knows there purpose and will grab them himself.
  • He can’t be left alone in a room for fear of hurting himself or others.
  • Wanders out the front door/back door.
  • Tears apart bedding, mattress, box spring. Coopers bed has to be on the floor now.
  • Removes every object from 1 room and puts it in another room on a regular basis. Meaning, everything but heavy furniture goes from one room to another.
  • Has to have his Kindle at all times. If there is an interruption in WiFi he will completely melt down and get violent. He has broken 5 devices in the past year.
  • Does not understand the command ‘stop.’ He will run when asked to stop.
  • Attracted to danger. Goes for the road, water, etc. He will run towards dangerous situations.
    • He does not know that he needs to wear a coat, shoes, hat, mittens
    • He can’t call out if missing-Completely nonverbal
  • Unbuckles car seat while the car is moving.
  • Attempts to open car doors, windows.
  • Throws electronics into water like sinks, lakes, bathtubs.
  • He won’t walk any distance. Meaning he won’t walk into a store and no longer fits into a baby size stroller. He can’t fit into a cart anymore. If I do put him in a cart he stands and throws things. Bringing him out in public is very challenging.
  • I can no longer lift him. He is 60 lbs.
  • Sleeping-Wakes up between 4 am and 5 am every day. At times he wakes up at 3:30 am.
  • I have extreme PTSD worrying about his care and putting him on the bus in the AM (5 days a week). He hits, kicks and runs.
  • He has to sleep at my house during the school week because he needs a set schedule.
  • Can’t have a typical babysitter.

Self-Care

  • Not potty trained. Has severe constipation issues.
  • Will poop and take off his diaper and smear it on the floor or walls. Has no concept of poop on his legs or leaking out.
  • Can’t dress himself or feed himself. Can’t use silverware or use a cup. Throws food. Has severe food aversions. Only eats 5-10 foods.
  • Medication Administration including Enemas.

Seeing Your Words on a Computer Screen

12924577_1297285863615204_7815923785730277894_nI wrote a post a few weeks ago about depression. I didn’t really share it around. I kept it kinda private. It’s very hard to be honest in real life about depression. Even today as I read my repost on Breaking the Parenting Mold I struggle to believe I really wrote those words.

They are pretty raw. And vulnerable. I am almost embarrassed by them. And worried that people are going to judge me.

But, sigh, they are the truth. And I worry about sharing them.

Here is the post: The Stigma of Being s Special Needs Mom with Depression

Grief is a very large part of my life. I spend much of my day managing grief. Pretending it’s not real. Accepting it. Justifying it. Burying it deep down inside.

I had a pretty great conversation the other day about ‘choosing joy‘ above all things. Waking up and deciding to be happy. I want to do that every single day. I strive for that my friends.

This week I am doing great. Last week was pretty good too. Cooper is healthy. The appointments are down. We survived conferences and therapy and his last round with the GI doctor. We survived a broken kindle and Halloween. He is sleeping in until 6 am these days. He is eating. He is giving more and more hugs these days.

Today I am OK.

But the depression is always there. Brewing under the surface. I can feel it at all times. It’s a weight on my back.

As I drove into work today I was chuckling thinking about my two sons trick-or-treating last night. They were each a riot in their own way. And I will tell Cooper’s Halloween story here when I have time.It’s pretty great.

My mind started to wander as I thought about winter approaching. And Cooper’s birthday. He is going to be 6.

Cooper’s birthday is a very low time for me. He is a December baby. Add in two holidays and the stress of autism and expectations and you have the perfect combination of parent depression.

December is bad for me.

Age 6 and no words. I will start repeating it and analyzing it. I’ll do it for miles while driving. I remember thinking that at age 2, 3, 4 and 5 that soon he would be talking. Everybody talks. Everybody speaks.

What does 6 and nonverbal look like? What does 10 look like? And I’ll keep going. A teenage and nonverbal. A man and nonverbal.

It will cycle through his life. Flashes and glimpses of his future. Until I put a stop to it. And fight to stop thinking about sad things.

Today I am OK.

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Follow me on Instagram to see a glimpse into life with a nonverbal ASD child.