To The Parent of a Newly Diagnosed Child
Hiya there friend,
Your child has just been diagnosed with Autism. You heard about me from a friend of a friend. Or maybe you found me on Instagram. Or you emailed me at 1 am as you were frantically googling autism in the middle of the night.
You are so confused and scared. You feel like you’ve lost control of your life. I see you. I understand what you are feeling. I was you. I am you. You are going to look to me for hope. You are going to search through hundreds of blogs until you find the one that sounds like your child. Maybe that’s Cooper. And maybe it’s not.
I know you are in shock. Even if you knew deep down that something was different about your child you are still in shock. Hell, Cooper was and is completely nonverbal at age six and there are days where I still think he will snap out of it.
When I walked out of Cooper’s diagnosis appointment I felt every single emotion possible. We waited for seven months for that appointment. The day came. The appointment happened. We got the diagnosis. We left. I cried. Everything was immediately different yet exactly the same. I was not the same woman that walked through the front door of Fraser.
I Was An Autism Mom
I was an Autism parent. A special needs parent. I had a label. I was immediately different from other parents. I felt like it was tattooed on my forehead. I immediately questioned everything I did during my pregnancy. I hated my body for failing this child. I felt every single emotion possible. As I am sure you do too. But they are flying at you so fast you can’t actually make out one from another. It’s a flood.
Relief. Sadness. Confusion. Isolation. Fear. Embarrassment. Anger. Desperation. Grief.
I wanted to take my beautiful baby and run away to a cabin in the woods. I think I actually tried to figure out a way where we could move to a remote part of the state. I wanted to hide. If I hid him this would be fine. I could outrun Autism. I knew I could. No one had to know. This is called fight or flight.And it’s the grossest feeling ever. It’s not logical.
I get it friend. You are an autism parent now too. A special needs parent. You are in a group. A group that you don’t want to be part of. And you feel more alone than ever.
So Many Emotions
I know how you feel. All these emotions are flying at you and you don’t know how to manage any of it. And to make it worse you still have this super challenging child. Then add in everything you’ve ever heard about autism from Google and your mother’s sisters friends daughter. There are buzz words like Medical Assistance, Social Workers, Case Management, Financial Aide Workers, and IEP. The list goes on.
The advice is pouring in. Random friends of friends are emailing you. Your Aunt is tagging you in an autism post on Facebook. Your mom knows a woman who has an autistic grandson. You should call her. You keep hearing early intervention is key. You feel like you need to do a million things immediately. Cut out gluten and dairy. Call the school district and the county. Get more therapy. More, more, more.
But the oddest feeling of all is how the world keeps going on around you. You are different. But yet your child is not. They are the same.
You went to the appointment. You got the diagnosis. You left the appointment. You told Grandma and Grandpa. You tried to answer questions. You cried. You hugged your spouse. You talked about the unknown future. You drove home. You fed your child dinner. You gave your kiddo a bath. You put him or her to bed.You hopped on Amazon and ordered five books on autism. You joined a special needs parenting group on Facebook. You googled ‘Autism and Hope’. You got into bed. You cried some more. You thought about the day.
The Reality Sets In
You spend hours wondering if the psychologist was wrong. You immediately Google, ‘Autism Misdiagnosis’ and find a wonderful blog post about a child cured from Autism. And you think, ‘this is going to be fine. This will be fine.’ I can make this fine.
Your kiddo will have a few good days. You hate to admit that you haven’t left your house nor are you challenging them. So everything seems fine. Then your child will completely and utterly throw you for a loop. Or maybe you will see them next to a peer and the blatant differences will scream at you. This is real. This is happening. And you can’t outrun it.
You will look at your baby and see the exact same child you did pre-diagnosis. Nothing has changed. All of a sudden you hate the term Autism. You think if you hear it again you might scream. Can you say it out loud yet? Can you say, ‘my child is autistic.’
It took me a year to be able to say my son has autism to a group of people. I felt like I was letting him down. Or I was determining his future. And I definitely felt like I was labeling him. I could feel the sympathy and ‘I am so sorry’s’ from strangers before the word even left my mouth.
This will sound crazy to you but a day will come when you will tell someone that your child has autism and it will be a good thing. That sounds ludicrous right now. Just believe me. The day will come and you will say it and you will see understanding in a strangers eyes. And you will be thankful that you can explain to people why your child is hitting them self in the head. Or rolling on the ground screaming.
In a super weird completely messed up way that word is now your ally. But you aren’t there yet. So don’t think about that please.
If you are anything like me your first thoughts post diagnosis are ‘what now? You need a plan. A focus. The night after his diagnosis I needed to research. I needed to stay busy. I needed to fix my son.
I want to tell you that I did it all wrong. I put way too much pressure on myself and my marriage and most of all Cooper. Well, maybe not all wrong. But I was so panicked. I didn’t have the best support system and I isolated myself. Cooper’s dad would say I became a martyr.
I want you to take it slow. I want you to hug your child. I want you to cry. I want you to take some time to grieve and sit in the dark. You don’t need to look on the bright side yet. You should need to feel everything.
Here is My Advice
- Take Time To Grieve
Be sad. Don’t force yourself to be happy. Don’t lie to yourself either. You pictured your child in one way and now you know that may never happen. Do not let anyone tell you that you shouldn’t be sad. Or that it could be worse. Do not listen to any stories about people that have it worse. Do not feel guilty for being sad. If I had a quarter for every time I felt sad and heard a story about a mother that lost her baby or childhood cancer I would be a zillionaire. People do this because they don’t know what to say when talking to a grieving person. Feel every feeling friend. Just sit in it for a little bit. - Take Time To Process
Nothing is going to change right away. I thought that our lives would change immediately once we knew if our son was autistic. I was wrong. It took months for us to see any effects of the diagnosis. There was no medication. No magic pill. Honestly, there was no hope given. There was a label. A diagnosis. A heavy title. And I felt every ounce of its weight. By the time we hit the car I was already on Google trying to find out how to fix this. As a result I did too much too soon and it left me feeling extra anxious. I was making phone calls and raising expectations. I wanted to do as much as possible. How does that old saying go…I was throwing stuff at the wall to see what would stick. Don’t do that. Just process. - Wait To Tell People
I told way too many people about Cooper’s autism appointment. I immediately regretted that because I didn’t know what to tell them after. I was scared. And was too sad. I also had no answers. I didn’t know how to answer people’s questions. Still to this day people ask me if Cooper is going to talk. Or they ask what his future looks like. HELL IF I KNOW. I wasn’t prepared for people’s questions and they made me feel so much worse. I was too sad to help them understand autism. - Be Patient
I really believed in my heart that our lives would begin to change the second we got the diagnosis. If the universe had any idea what it did to me physically and mentally just to go to the appointment they would’ve saved me right away. But life doesn’t work like that. Nothing changed. We walked in there with Cooper. We walked out with Cooper. We told close friends and family the news. That was it. We knew nothing more, nothing less. And then we waited. - Build Your Village
When my son was diagnosed I felt incredibly isolated. I knew my life was different than my friends and families. I need more than the average parent and yet no one in my real life understood what I was going through. Start building your village as soon as you can. Finding other parents changed my life. Blogs helped. Facebook groups helped. I joined an Autism support group. Reach out. Get a social worker. They are the gate keeper to all benefits for your child. Find amazing teachers, doctors and therapists that love your child. Speak up if it isn’t working. These people will become your life support. Lean on them. - Get Ready For A Fight
I know this sounds funny. But it’s true. You are now the sole care advocate for a vulnerable child that most likely can’t communicate. You are going to fight battles that you didn’t even know were out there. You can do this. You will feel the need to defend this little human to people. Before you know it you will become an advocate. It will be scary at first. And I want to tell you a secret. The fight doesn’t get any easier as they get older. You just get stronger.
Grief is not linear my friends. You are going to have highs and lows. Cooper will be seven in a few weeks. The severe parts of his Autism are getting more evident. His sheer size alone is a lot. I still grieve. Just when I think we are settling into a routine or have a win a new behavior will develop. Kicking. Pushing. Putting small objects in his mouth. Tearing apart beds. Knocking over lamps. Climbing on cupboards. The list goes on. We add in therapies. We change strategies. I have one meltdown to every five of Coopers.
And you know what, that’s OK.
I want to tell you that you have the strength to do this. You will become stronger than you ever thought possible. Your skin will get so unbelievably thick and you will become the strongest advocate for a vulnerable child. That’s pretty amazing if you ask me.
You don’t have to fight autism. Or carry the torch against it. But you do have to fight for the best services possible for this little person that is completely and solely dependent on you. And good god friend you will feel isolated and alone because of this disability.
I won’t lie to you and tell you that it’s going to be easy. I won’t lie to you ever. Being a special needs parent is hard and scary and lonely. And it’s also loving and happy and joyous.
I want you to know that you can do this. You are not alone.
This post is amazing and exactly what I’m feeling right now. I’m so thankful that these feelings are not just mine, but those of pretty much every mother or father struggling with the news of this diagnosis. Thank you for your heartfelt honesty.
I feel the exact same way I’ve felt so lost and isolated since my 3 yr old daughters diagnosis until I styled onto findingcoopersvoice.com … have no contacts w other autistic parents in my area or online of anyone knows of some my email angela.marie81@gmail.com
Oh Katie what a beautiful letter! I have been in the autism world for 8 years- so some of the first feelings have gone away. When I read your letter I felt everything. You are a wonderful mother! I look at Vance and I smile now. What a wonderful feeling! I still cry every once in awhile but sometimes it’s because I am so proud of Vance! Stay strong girl! I’m here if you ever need me! Love ya cousin
Katie this is so beautiful! Your words are so eloquent, emotional and honest. Cooper is an amazing little boy, and he has amazing parents in you and Jamie. Love you all! Xoxo
I feel like I just read EXACTLY what I went through almost 3 years ago. I didn’t sleep for almost a week after, I did so much research to try and fix this I drove myself crazy. I remember like it was yesterday and yet it seems so long ago. Its amazing to find someone who gets it.
Thank you for posting this. We received a diagnosis for my 3-year-old son the same day you wrote this. This is pretty much everything I felt.
It is real. It is hard. It sucks.
But we were never promised an easy life, in fact history tends to prove the opposite.
Life is unfair.
My son is 3. My son is a fun loving kid.
My son is autistic. My son is not hindered by this. My son is a world beater.
We each have different mountains to climb. This one is ours. We will get to the top.
And we will see you at the top of yours. Until then…
Let’s climb.
If you want to follow us and our journey, we are at http://www.atouchofausome.com
Thank you!
This hit me right in my soul. I’m still in shock from a diagnosis I already knew. Mothers just know when something doesn’t feel right. The hard part for me is saying there is something wrong with my child. In my eyes he’s still perfect. It’s all a constant struggle. Its a horrible war I fight with myself everyday. I do it for Ryan. Everything is worth it.
I fight the war too. It’s something that can’t be explained to people that don’t live it. Hugs to you!
This is exactly what we are going through now. This brought me to tears. The honesty is refreshing, so thank you.
Aw! You are very welcome friend!
Thank you a million times for this!!! I was in tears by the time I was done but they were tears of mixed emotions but mostly relief that we weren’t the only parents to feel like this. I wish I had had this when my child was diagnosed. The isolation is so deafening sometimes, I feel like I could just crumble. But with the downs, we have our ups and man, oh man, those ups are worth everything. Stay strong, parents. Our littles need us.
I appreciate your honesty and frankness so much. I have a son with autism. He’s 29 and just tonight I was advocating for him. No, it never ends, you don’t get a day off from autism. My son is one of the most amazing people I know. Yes, he has autism but he is not autistic. I hate that word. It’s a label that serves no purpose.
Thank you for writing your article. I wish that I’d had something like this so many years ago when we first received our son’s diagnosis.
I try to avoid any autism blogs as I find myself becoming frustrated with them. Parents trying to find cause, trying to find blame, trying to ‘heal’ and it just isn’t what I care about. But this, I could have wrote this myself. My son is coming 6 and you have truly felt every emotion and feeling I have encountered in the 18 months since my sons diagnosis. Thank you. Thank you for being so damn honest and for bringing me to a blog I feel at home reading xxx
Hi, I too have a Son on the spectrum named Cooper! This is exactly how I felt! He is 11 now and things really do get better in some cases. I can say in our case, I have seen miraculous improvements. My Cooper went from non verbal at 3 years old to mainstreaming in kindergarten being fully verbal and now in the advanced gifted program in 5th grade. We live in Mississippi and it didn’t come without a struggle. There is not a lot of resources here like in a lot of places and you have to stay very vigilant. We have certainly had our ups and downs. Just when, I thought things couldn’t get worse, they would, but somehow we kept trudging along and we made it through one step at a time. There was always somewhat of a little light at the end of our tunnels. Cooper”s meltdowns are little to none now, he thinks before he speaks most of the time. When I see he’s becoming agitated and on the verge of a meltdown, he takes five and works through it. He is still quirky about things and has trouble making friends, but we have crossed mountains and I couldn’t be more proud! To all you newly diagnosed families, hang in there, scream, laugh, say some prayers and most of all , keep loving and believing in your baby! You will make it through this! A glass of wine every now and doesn’t hurt either! ?
Lovely piece and so true…..my beautiful daughter Paige is 26 and autistic…..I have battled since the day she was born…and am now quite good at it .!!!!…I will challenge decisions,that I feel are wrong,I feel drained at having to do it but am happy to for her …..I have never accepted less than the best or as near as I can get for her …..medically ,educationally,socially…..even with family and friends.If I can’t find a service that I need in my borough I will drive to another if I think it will benefit her ……she is my first thought in the morning and my last at night ….my whole life is planned around her ….she makes me late for everything I do ,with her routines and obsessions, her phobias and fears drive me crazy and her repeating rituals and tantrums can take over a nice day ….some days she is quiet and reserved and the next she will constantly talk and throw dates and times at me all day long or ask me the same question 10 times .
It was a massive struggle when she was a young child as I had 4 children in 4 years ….her being the second youngest .It got easier as she got bigger and then became hard again….it’s a roller coaster of emotions……as she can make me cry after a bad day but she also makes me roar with laughter and burst with pride ……she still dresses up in Disney clothes, dances like Beyoncé and believes in Santa….says wine is mummy and daddy drinks and thinks that everything cost £1 but she is my little princess and although she can reduce me to tears in frustration , she is also my life companion/ best friend and I will fight for her rights all the while that I’m breathing air xxxxxxxxx
I don’t know why the parents of autistic children act like their child has died or something. I am an autistic adult. It’s not something we are afflicted with, and it’s not a learning disability. It’s a social, sensory and communication-affecting disability. I am non verbal, but I am very intelligent and insightful. I am aware of who I am and I am proud. Do not make your children feel like who they are is not good enough. They are autistic. It’s not something they have, it’s simply how their brains work. Be proud and don’t act like it’s a bloody death sentence.
I completely agree with you. There is nothing ‘wrong’ with my child. Except for the fact that he is severely autistic. Nonverbal. Developmentally delayed. Has Apraxia. And Sensory Processing Disorder. He is also the love of my life. He also will require 24 hour care for the rest of his life. And I am proud to call myself his mother. I am sorry that my post offended you. Unfortunately I can’t hide my feelings. When I was pregnant at 28 I never pictured my future to involve carrying for an adult with severe special needs. Call me ignorant. Call me stupid. Thanks for stopping by. I really do appreciate your feedback. I will try and grow from your words.
Parents of children with autism don’t act like their actual child has died. But it’s the child a parent envisioned that has “died.” A theoretical child. Very few people plan or expect to have a child with any sort of disability. Many people envision having a typical child….they often envision a child who goes through life in a similar way they, themselves, did. They think about their child bringing home friends. Going to parties. Having sleepovers. Eventually graduating high school. Going to college. Getting married. Having kids. While these things are possible for many people with autism, it isn’t going to be the case for everyone. And if a parent sees that these things aren’t in the cards…they have the grieve the loss of a future they thought they would have. I have a son recently diagnosed with autism. He is only 3 so we really have no idea what his future holds. As he gets older, I am sure it will be come a bit more clear. But I’ve already had to grieve some things I will never have (he is and will remain my only child.) For example, I will never know what it’s like to have a baby (or toddler) call me “mama.” Does that mean I love my child any less? Of course not. But it’s okay for a parent to be sad about things they have “lost.” No one can tell another person how to feel.
YES, YES, YES! You are exactly correctly. Thank you for this comment. You summed up my words completely.
[…] Source: To The Parent of a Newly Diagnosed Child: […]
love you post some many things I have felt and learned.. our journey is just beginning and we have already seen improvements.. so important to go through the motions and be okay with not being okay… thanks and all the best to you, Cooper and family!!!
Beautiful.
I started a Special Needs Support Group in Floyd and Clark County Indiana in 2008, called REACH-IN (Readily Embracing All Children under Heaven In Need). We’re in the beginning stages of starting another group in Reno, Nevada. I am going to put a copy of your letter in folders for families who are new to the group. Beautifully written.
Proverbs 31:8
Speak up for those who cannot speak for themselves.
I’d love if you shared my words. Thank you!
This is really lovely and so so true. <3
This right here is everything! I’m a mother to a seven year old boy named Charlie who is non-verbal, this is everything I felt and did. With tears running down my face I can say I’m so proud to be his mother and I wouldn’t change it for anything. Things wil be hard, things will get stressful but it’s all worth it! Thanks for the read, it was awesome momma!
Thank God for this post. I’m a new autism mom; our oldest daughter (age 4) was diagnosed borderline autistic. She is verbal but doesn’t always interact socially. She isn’t completely potty trained and she’s the size of a 7 year old. I was given books and articles and therapy appointments to set up, and I still feel….lost, sad, overwhelmed, competent, incompetent, hopeful, and hopeless, all at once. Thank you for posting this. I know I’m not alone.
I enjoyed your journey with Autism, as 21 years ago I went on this journey with my daughter, Jenny! She was diagnosed with low functioning autism. I had never heard the word or of it before, so felt like being hit by a truck however I refused to listen to the specialists comments of her never being like her peers and bleak future, I went full speed ahead. It is why I wrote my book of our journey as I was in the same place you were and other the other commenters. Wanting to enlighten and engage Autistic parents and families to see how we went along our road with Autism and see where Jenny is now at 24 years of age. My book is, “The Autistic Author and Animator”. All of us parents should write a book of our child’s journey and let it be an eye opener not only for the Autistic Community but for the whole general public. Take care, Autism Connects and Autism rocks. Take on this journey and see the beautifulness that comes out of it for both your child and you and your family. We learn from them. xo 🙂
Your article is amazing. My son Charlie is 3 and has been recently diagnosed with moderate to severe asd. Your post is both insightful and real and I am going to have to print it out so that whenever I feel like I can’t do this, I have your words of hope and strength to pull me through. Thank you.