The Emotional Weight of Autism

I am the mom to an amazing kiddo with autism. He is almost seven. We have a bond that is indescribable. I am his voice. He is my purpose. I can read his mind. I can understand every scream, grunt, flap and hum. I know what he needs when he points to his Kindle. I know when he’s hungry and thirsty just by the look on his face. I just know. It’s my job to know. It’s my life.

Parenting in general is not easy. We all know that. So, I’m not going to lie and say that parenting a child with autism is all magical and beautiful. I love my son more than anything but the truth is that Autism is hard. And most of the time it’s really physically and emotionally exhausting.

The World Sees Me As Super Mom

People are always telling me…I don’t know how you do it? They say I amaze them. They follow it up with something like, ‘I can’t imagine changing a seven year olds diaper.’ Or, ‘I can’t imagine not being able to leave house.’ They’ll mention the exhaustion I must feel. They always mention his screaming. My close friends and family even ask what it is like to be hit by your child.  And I get it. It’s noticeable. Cooper’s care is a lot and it’s loud and intense. Caring for a person that has no self-care, or understanding of it, is hard. It’s that simple.

Then there is the ‘business side’ of autism. There is the never ending paperwork, phone calls and emails. There are therapy appointments and IEP meetings and home visits. And don’t even get me started on the evaluations and questionnaires about where my son is at cognitively. I could go on and on about the nonstop following up and proving that my autistic, nonverbal son is indeed autistic and nonverbal and needs services.

These are the struggles the world sees. These are the visible parts to raising a disabled child that I willingly share with the world. The lifting, chasing, restraining, deciphering, proving and advocating.

I’d Become A Martyr

After almost seven years I’ve learned how to ask for help when I need it. I had too. I was drowning.  I’d been called a martyr one too many times. I’d been accused of doing it all by myself. And maybe that’s true. But in my defense, I truly believed I was the only person that could help my autistic son.

I used to think that no one would ever truly take the time to understand him or decipher his needs. I thought that no one could handle his screams or hums. Or that no one would take on the burden of changing his diaper. His needs were so intense I figured it was just easier if I did it all myself.

When Cooper turned six I had completely burnt myself out. I wasn’t sleeping. My back was so messed up from carrying his 65 pound body. I was anxious and irritable. I was always sick. I was drinking way too much caffeine during the day and one to many glasses of wine at night.

Asking For Help

I realized what I was doing wasn’t working. I wasn’t caring for myself. I’d pushed everyone away. I learned the importance of letting people help me care for my disabled son the hard way. Looking back I think that is just another step in the journey of a special needs parent. I had to realize I couldn’t care for him all alone.

Today, my son has a village built around him. He is loved by more people than I ever thought possible.

If I am at my breaking point now…if the exhaustion gets to high…or the screams get to be too much…or the isolation makes me feel crazy…I can call someone to come sit with Cooper. I can get help with the physical parts now. I can get help to change my kiddos diaper. I can have someone sit with him while I shower.

But once again I find myself once again in a tough spot and it’s taken me years to be able to put it into words.

The Emotional Side of Caregiving

There is a whole other dynamic that goes into raising a disabled child that no one talks about. Maybe there is a stigma. Maybe people are embarrassed. Maybe they can’t put it into words.  It’s the emotional side. The decision making. The nonstop worry. The fear.

I call this…the weight of autism. At times it is crushing. And it is always invisible to the outside world.

The weight of autism is staying up all night worrying about your child’s future. It’s making medical decisions. It’s constantly researching ways to help your child. It’s refusing to give up. It’s accepting that your child has autism, which to most medical professionals, and the world, is still a mysterious neurological disorder and that no one will tell you how to help them. It’s signing away a child’s rights with power of attorney and guardianship. It’s preparing for their life after your death.

The Fine Line of Hope

It’s never giving up hope that your child will talk, make a friend, graduate from high school, get married and have babies. And at the same time it’s accepting that your child might never talk, make a friend, graduate from high school, get married, or have babies.

It’s the heavy stuff. And it makes me wonder, where is the emotional support for caregivers? Caregivers often get depressed. They feel isolated. More often than not they can’t sleep. Their anxiety is high. They often have a whole host of medical issues. They rarely go to the doctor. They are rundown.

No parent, especially a special needs parent, wants to admit how hard this is…because if they do….they feel like they are letting their kids down. And they would rarely ever admit that to anyone outside the world of disabilities. Our lives are just too strange. Too bizarre.

Late Night Messages For Help

But not a day goes by where a fellow Autism parent doesn’t reach out to me and tell me they are struggling. The emails and messages usually come in the middle of the night. They are frantic. They will tell me it’s just too hard. They can’t do this for the rest of their lives. They ask me for my secret. They want to know how I am doing it all with a smile on my face. They want to know how I separate from his disability.

I always tell them the same thing. Having an autistic son changed me in a profound way. He gave me purpose. He gave me strength. But it also broke my heart in a way that will never fully heal. Never hearing my son say mom. The walking on eggshells all the time. The constant waiting for the next meltdown. These things changed me. I am different now. And while I am always smiling, if you were to peel away the layers of  Kate, you would see the broken heart of a mom who is consumed with worry for her son’s future.

Where Is The Emotional Support?

At some point we need to step back and realize the immense pressure it is to care for a vulnerable human for their lifetime. Most parents are saving for a college…I’m saving for Cooper’s care after I’m dead. Where is the emotional support for that?

I find myself the loneliest when I am making an agonizing decision about his care. Typically, he has started a regression. Or, he is hitting me or self-inuring himself. And I have to decide how to help him…blindly.

Do I pull him from school? Do I start a new therapy? Do I try to potty train him?  Do I change his diet? I’m faced with these decisions often and they never get any easier. And when it fails…when the new therapy fails…the diet doesn’t work…I am at fault. Because I make all the decisions. And I do it alone.

Take The Worry For Me

I wish someone could step in my place for a day. I want them to hug me and tell me it’s going to be alright. I want them to take my worry about my son’s future…even if it’s just for an afternoon. I want to be able to breathe without the weight of autism on my shoulders. I want to go out for dinner and not think about Cooper’s care. Or go to an event and not think about all the parts of life my son is missing out on.  I want them to take the uncertainty about his future and tell me what to do. I want to have time away from my son and not constantly worry about him. What people don’t understand is that even if I get a break from the physical stress of raising a child with a disability, my mind and heart never stop. There is no real break.

It’s not the diapers or enemas that are breaking me. Or fighting with insurance companies. Or even being hit and kicked. That I can handle. It’s the uncertainty about his future. It’s carrying the weight of my child’s disability solely on my shoulders for the rest of my life. That’s the part that is destroying me. And, there is no break from it. Not ever.

As parents we keeping going and loving and giving our kids the best life possible. That will never change. But, as I lay in bed worrying night after night about his care, his health, his future I can’t help but wonder what the weight of his disability is doing to me. And who is going to care for the carers?

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  • Melinda Mattson

    August 11, 2017 at 2:03 pm
    Reply

    You nailed it. I felt a common Bond with every word....

    • Karla
      to Melinda Mattson

      August 12, 2017 at 8:59 am
      Reply

      My daughter is 22. My husband and I played tag team parenting for the last 21 years. He passed away last December after a 5 […] Read MoreMy daughter is 22. My husband and I played tag team parenting for the last 21 years. He passed away last December after a 5 week battle with cancer. I am totally alone now. My girl aged out of school. I am now awaiting crisis services for adult care. I've been in the Medwaiver wait list over a decade. Now we are at crisis status as my only support(my younger daughter) leaves for college in two weeks. I am going to have to quit my job if I don't get crisis status. We started a non profit group home right before my husband's diagnosis to have a place for our girl and a few others. But his death ended that as I don't have the time to fundraise and do it all alone. Our worst fear has come true. I am IT now. It burden of caring for a special needs child is on me and me alone. I have gotten guardianship of my daughter this year, managed to keep the household going with the help of my other daughter and some very dear friends, graduated my son from college and he is going to med school Monday, my daughter graduated from high school and is going to college on a full ride from her fabulous brain and I'm left to pick up the pieces of my life without my husband of 34 years. I am overwhelmed with the immense burden of it being solely on my shoulders. I haven't even had time to mourn John's death properly as I was thrust into single parenthood. No one but us k ow the sleepless nights and constant worry and no break in sight. Read Less

  • A E

    August 11, 2017 at 4:12 pm
    Reply

    Hey Kate, I am different now too, and if you peel away the layers, you will find a mom with a broken heart too.. […] Read MoreHey Kate, I am different now too, and if you peel away the layers, you will find a mom with a broken heart too.. my son just started K in a new school, new city, and I am so consumed with worry, worry they won't love him and won't treat him well, cause he can't tell me if they've are good to him or not, my tears falling when I am alone, it's hard not to worry.. Read Less

  • Sara

    August 11, 2017 at 6:30 pm
    Reply

    I know us moms do the bulk of worrying for our kids, but I really hope you aren't alone in this. In those beautiful family […] Read MoreI know us moms do the bulk of worrying for our kids, but I really hope you aren't alone in this. In those beautiful family portraits I see a loving husband there too by your side who is also a caretaker and shouldering this with you as Cooper's dad and your partner for your family team. I don't know how this feels as I am not a mom of a special needs child but I enjoy reading your blog to educate myself and grow empathy for those like you who are going through it. Read Less

    • Lindy
      to Sara

      August 11, 2017 at 6:55 pm
      Reply

      I, too, have a child with autism. My daughter is 8. She is very verbal but I still worry about her future as there are […] Read MoreI, too, have a child with autism. My daughter is 8. She is very verbal but I still worry about her future as there are so many factors to a child's disability. I completely can relate to where you are coming from. I try and share those worries with my husband as much as possible so we can carry that worry together and have each other to support one another. That helps me feel less isolated. Sometimes it is hard but I make an effort to share those things with him and it really helps me and it has made our relationship that much stronger:) Hugs to you and your sweet boy!!! Read Less

  • Colette Dingens Evangelista

    August 11, 2017 at 7:39 pm
    Reply

    If I could, would take away all of your hurt and fear and worry. I would hold you and rub your back and tell you […] Read MoreIf I could, would take away all of your hurt and fear and worry. I would hold you and rub your back and tell you it will all be ok. Once I was on the side of the road crying holding my baby as my son with autism sat in our car laughing like a maniac. He had been diagnosed 3 days earlier. Two women pulled over. One took the baby without a word and walked away cradling him. The other took me in her arms and held me. She rubbed my hair. She rubbed my back. She told me everything would be ok. I sobbed in her arms forever. That kindness was a treasure and basically a miracle. I wish I could do that for you. Just know I got your heart and hurt and you are not alone. Read Less

  • Heather Burnett

    August 12, 2017 at 6:48 pm
    Reply

    I wish I couldn't identify with every word you wrote, but I can. It is never-ending. Most of the time when I go to a […] Read MoreI wish I couldn't identify with every word you wrote, but I can. It is never-ending. Most of the time when I go to a dark place-feel the weight of autism-I am able to snap myself out of it. I don't have any family around. My mother is not supportive. My parents live an hour away and they have visited us (I have three kids in all-16,9&5) about 5 times since my 16 year old was born. Sometimes she calls. It's mostly about her problems. They want me to take care of them. Wow. Please understand that I am not a down in the dumps-feel sorry for me type of person. I have a problem asking for help. I don't want to seem week or needy. Plus I only have three real friends and they all have lives...Like you, I just wish I had someone (other than my husband) to tell me everything will be ok. I have gotten through 16 years of motherhood without my mother's support. My mother in law was all I had and she passed away three years ago. So now, what? I swear I need a support group. Sorry for oversharing. I didn't mean to do that. Just wanted to say I understand. Read Less

  • Amy Wright

    August 18, 2017 at 1:00 pm
    Reply

    I too have a non-verbal, autistic son. He is 14. Also have 17-year-old son with autism, but he's (I know, I hate the word, too) […] Read MoreI too have a non-verbal, autistic son. He is 14. Also have 17-year-old son with autism, but he's (I know, I hate the word, too) higher functioning. My Sam went through an aggressive period, but mostly he's relatively easy to handle (good thing because he's six-foot-two). Anyway, he eventually became potty trained, although we still wipe him. He has an ipad, and we're trying to get him to use LAMP to communicate. I know how you feel, exactly how you feel, especially about the future. That weight will never go away. I tell myself all the time I can't die. I simply can't. Ever. I can't imagine leaving my son. But I've got seven years on you, and I hope I'm seeing into your future when I tell you it does get better. Never good. Never great. But better. You come to terms with some things you can't change. Just as you learned to ask for help, you will gain other skills as time goes by. I still don't sleep, and drink too much wine. But I don't think I'm as on edge all the time as I used to be. Like I said, I think you begin to accept the things you cannot change and slowly find ways to live with them. The future is my greatest fear now. But I try to live each day, one day at a time. That's really all we can do. You are not alone. Far from it. Read Less

  • Katrina Smith

    August 18, 2017 at 1:04 pm
    Reply

    WOW! You hit the nail on the head! My son is turning 18 next month and all I can think about is his future. I […] Read MoreWOW! You hit the nail on the head! My son is turning 18 next month and all I can think about is his future. I cry now all the time. I never did when I found out at two and a half, My instinct just kicked in on how do I help him. I tried to explain to my mom that she couldn't begin to understand how I feel everday being a single parent raising him and my daughter by myself. Me not being around his whole life to care for him and love him terrifies me. I'm going to share this with my family and co-workers. Thank You Read Less

  • Helen Ash

    August 19, 2017 at 7:52 am
    Reply

    Powerful words. Thank you for sharing your eternal experience. We all have our own journeys and I agree, in the UK services support the person […] Read MorePowerful words. Thank you for sharing your eternal experience. We all have our own journeys and I agree, in the UK services support the person with autism rather than the parent. For me, I grieve, there are moments when I know that I will experience further losses such as weddings, grandparenting and what happens when I die, However, one day I will die; so I have learned to embrace aspects of positivity through action planning and researching to reduce my long term anxiety about an unknown future and being grateful for steering energy into appreciating every day, day by day as it comes. I do look forward to reading more from you as you are clearly writing from with love from your heart. Thank you. Warm wishes Read Less

    • Annette Hillman
      to Helen Ash

      September 29, 2017 at 4:08 pm
      Reply

      Your blog is fantastic. Wish you could remove the troll comments.

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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When my son was first diagnosed with autism no one was talking about it. Autism was hidden. I vow to change that.
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