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

Diaper Options for a 6 Year Old

Hey all,

One question I am continuously asked is what kind of diapers we use for Cooper. He is a big boy weighing in at 60 lbs. He currently wears a size 7 diaper.

Cooper’s diapers are covered by his Medical Assistance. As far as I understand, and this may vary by state, a child with an autism diagnosis who is covered under medical assistance gets free diapers after the age of four. That’s what I was told. We had to figure this out for ourselves. Meaning a fellow parent told us.

Cooper started on Medical Assistance (as back up to my primary health insurance) at age 3 1/2. We didn’t find out that we could get his diapers paid for until he was almost 5.

The system is broken my friends.

I order his diapers from a Medical Supply company and they are delivered right to my house. This is awesome. And life changing. The company calls me once a month and I place the order.

Note: Diaper wipes are NOT covered under Medical Assistance. This is a huge bummer. We go through hundreds of wipes a day.

The first time I had to order size 7 diaper I cried. It was tough for me and I felt really sad about it.Now he is almost into a size 8. Sigh.

The first brand they sent me was called Prevail. And they fit like I imagine an adult diaper would. They are basically a square. I HATED THEM. They didn’t stay on. They went all the way up Cooper’s back and front to his chest. They were bulky and made a lot of noise when he moved. I sent them back immediately.

The second brand we received are called Cuties. I LOVE THESE. They work great for us and fit like an actual diaper.

Here are a few pics of the cuties as well as the Prevail brand. I also did quick Amazon search and they do sell them.

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The Cuties Brand is on the left.

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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.

 

 

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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Sensory Balloons

Sawyer and I spent the morning making sensory balloons for Cooper. HE LOVES THEM SO MUCH.

I totally recommend making these if you have a kiddo that likes to hold objects. They are super squishy. Cooper will carry these around until I eventually have to throw them in the garbage and make new ones.

And making them really entertained Sawyer too. Of course I let him make a huge mess because it bought me 20 minutes to write this blog. Winning.

First, cut off a bottle. I used an old vinegar bottle but any kind will do. Attach the balloon to the end and fill with floor.

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I recommend putting a little water into the balloon before you tie it shut. It makes the flour more squishy.

 

And then I let Sawyer play.

 

 

 

 

Autism and Isolation

So many parents of special needs kids talk about the isolation they feel. I know I talk about it often.

It started early…around 9 months old for Cooper.

It’s gotten worse.

I have a NT super active three-year old, almost four-year old. Sawyer is by far my more challenging child. He is extremely busy. Even that is an understatement. He likes to be active and building and running and jumping. I am very much a boy mom so this works. I prefer messy outdoor and physical activities. We work well together.

I also have a severely autistic 6-year-old who refuses to play with toys, do any activity or even walk any sort of distance.

This is a challenge.

He is also a runner. He doesn’t understand safety or danger. So, as a result, he needs eyes on him constantly. Meaning he needs 1 person dedicated to him at all times. And, if we are at a pool or lake I prefer two people watching him. Sounds dramatic. It’s not. Cooper is extremely allusive. He wanders silently as well. There have been many times where I have looked away for a second and lost him.

I thought that maybe these challenges would get easier as Cooper got older. I was wrong. I can no longer carry him any distance. He wants to be pushed in a stroller and handicap strollers are well over $1000 and not covered under insurance. If we reach the point where he won’t walk anymore he drops to the ground like a dead fish. He turns to jello. A kicking, screaming pile of jello. It’s impressive. And gets us SO MANY stares from fellow people.

He is also so loud. And he can’t sit still. We haven’t been to a restaurant with Cooper since he was 12 months old.

There are other smaller challenges too. Places we visit must have WiFi. MUST is an understatement. There must be enclosed areas. I need to always have snacks for him. His certain sippy cup. Milk. I need to be able to change his diaper. He is 6 and 60 lbs. Doing this on the bathroom floor is disgusting.

It’s like bringing a 60 pound newborn out in the world. A newborn that can run and doesn’t understand safety.

Preparations to leave the house are extensive. Typically I am exhausted by the time we leave and the anxiety of what is to come makes me sick to my stomach.

So.

We are home-bound most of the time. I feel isolated and claustrophobic in my own house. I dread the weekends most of the time.

I know that on both weekend mornings Cooper will wake up at 4:30 am. I know we will have a whole day before my friends and family wake up.

I know the days are on repeat. They never change.

Except now I have a super busy social toddler that doesn’t understand why we can’t leave the house. And saying, ‘because your brother is autistic’ only gets me so far.

I can see the resentment building already between this brotherhood. And deep down I get it.

We are trapped. And I see the future. I will set Sawyer up with activities and play dates. He will continue to socialize and grow. And I fear that I am going to miss it all. I will be here. In my home. With Cooper. Alone.

The summers are better.

In the summer we are able to go to parks. Some parks that is. Small, local ones. Not big, fancy parks. I can’t keep my eyes on both boys if there are too many play structures. I have to chase Cooper and hope Sawyer will follow behind.

The winters are terrible. Absolutely terrible.

Today in Minnesota it is -2. So freaking gross. We are on a 7 days streak of below zero weather. It’s been tough and I am really feeling it.

Cooper hates to be cold like most of us do. He also doesn’t understand snow or what to do with it.

So, we are home-bound for 4 months every single year.

If Cooper wasn’t autistic we would go to the Children’s Museum and malls. We would go on play dates. But we can’t. I’ve accepted that we can’t. But holy mother raising a NT toddler with a special needs brother is giving me a run for my money.

Cooper doesn’t get bored. He likes his house and his Kindle. He needs something to drink and eat and to have his diaper changed. That is it. He is content.

And the rest of us are going absolutely stir crazy.

Yesterday Sawyer and I dyed Easter Eggs. We made a homemade hat. We played with Play-dough. He gave his toys a bath. It was long. We survived though.

It started over today at 5:05 am. Sawyer and I made a homemade car and sensory balloons for Cooper.

I’ve noticed that this isolation is causing Sawyer to be extremely clingy with me. He has to always be touching me. It’s a lot.

I am taking today off from the boys. I need it. I need some respite as they call it. I just need a break.

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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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