Cooper’s Diagnosis

FullSizeRenderCooper turned 4 years old on December 6th, 2014.

I had a completely normal pregnancy with Cooper and was induced on my due date. I had a typical delivery, although LONG (holy f’ing ouch!) with Cooper. His Apgar scores were low at first due some breathing issues but he pepped up right away. If you are on a journey with a special needs kiddo you will realize every person and their sister wants to know about your child’s birth. I remember telling the school one time that it was none of their business. How Cooper came out of my vagina shouldn’t matter to them. Anyhow, I got used to it.

I knew right away that Cooper was different. I knew the second I brought him home. He never, ever slept. As a newborn, in a 24 hour cycle, he would sleep maybe 10 hours tops. I remember holding this baby and rocking and crying and being so confused as to why it was so hard.

Cooper met every physical milestone on time up until jumping. He also made excellent eye contact and was social. Besides being nonverbal and the trouble sleeping he was pretty typical until 1 1/2. After that I noticed he was really getting passed up developmentally. Not only could Cooper not do ANY standardized testing for his age, he also refused to try. That’s when the red flags started going up.

Little did I know at the time we were starting an emotionally exhausting journey. Cooper had digestive issues. Cooper had sleeping issues. Eating issues. Transition issues. And no words. He was diagnosed with a hearing loss. You can read that HERE. Then we found he COULD hear.

Autism was thrown around a few times but his pediatrician didn’t feel that was the right diagnosis. Honestly, we had to fight for a diagnosis.

And I didn’t know a lot about autism. Cooper didn’t line anything up. He didn’t spin or do a lot of flapping. He gave hugs and kisses and loves. And we have been told numerous times that if Cooper spoke he probably wouldn’t be on the spectrum. I don’t know if that is true but…

But he does really struggle at transitions. And trying new things. And playing.

IMG_1111In October 2014 after seeking out an Autism Specialist in a bigger city, Cooper was diagnosed on the spectrum. He also appears to have Apraxia or a motor processing disorder. Although he is very, very strong and a big boy, he has muscle weakness in his hands, arms and most likely his mouth.

After we received his diagnosis we moved our family 3 hours away to a new city so Cooper could have the best care possible. He now attends an autism preschool 5 days a week in the mornings that focuses on education and an outpatient autism program 5 days a week in the afternoon that focuses on social skills. Since moving we have seen AMAZING changes and improvements in Super Cooper. Still, no words though.

I’ve learned so much about Cooper’s autism. And it is so unbelievably lonely at times. My heart is broken. And I find living with a broken heart to be so exhausting at times.

It’s not the ‘autism’ that hurts. It’s the world passing Cooper by.

I have accepted it. I truly have. But I haven’t accepted the fact that my baby might never say mama or daddy. Or tell me about his day. Or go to college or get married or have babies. Those things keep me up at night. And that is what I write about here. My struggles with acceptance.

I walk a fine line between giving up and being hopeful.

I share a glimpse of life with a nonverbal ASD child on Instagram. Click HERE to follow me.

Here is a video of Cooper in March 2014. He still has no spoken words and when we ask him to mimic a word he will make a blowing sound.

A few posts to start with:

I Will Always Choose Cooper

Having the Only Autistic Kid At The Party

Mostly, Autism Is Just Lonely

What’s The End Game Here

The Diagnosis Post

The Stigma of Being a Special Needs Mom with Depression-Featured on Break the Parenting Mold

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28 thoughts on “Cooper’s Diagnosis

  1. I have a huge knot in my throat reading this. I’ve spent close to Two hours reading your story. My son is 19 months and is exactly like cooper. I have been worried sick and this makes me think my gut might be right 😦 my sons speech therapist has no answer as to why my son doesn’t talk or mimic she keeps telling us to wait it out….I can relate in so many ways. Cooper is beautiful!

    • Hi there. I read your comment when I woke up this morning and I have been thinking about it all morning as I run around with the kids. My husband is on a fishing trip so I am flying solo. Holy busy! I want so much to know what to say because I know exactly how you feel. It’s so scary. First, remember to breathe. I know that sounds silly but I will get in these panic moments and I will forget to breathe. And remember, you are not alone. I didn’t really notice Cooper’s delays until he turned two and from age two to almost three I felt so alone. So isolated. And I have an amazing husband and even he couldn’t help me. I cried all the time. Medical professionals made me feel even worse. Some told me to wait…some made me feel judged. Blogging has helped me in so many ways. I can write about my fears and anger and exhaustion and all of these other amazing moms find me. It has been life changing. And lastly, try not to let this consume you. (I know this is impossible…trust me!) Your son is so young and time is on his side. I promise it will get better. He will improve. To be honest, Cooper got more and more naughty up until 33 months or so. He couldn’t talk and really started to act out. Signing made a huge difference and also finding activities that he loved. And lastly, it’s getting better every day. This kid is growing up. And deep down I pray every second that it’s going to be fine.

      I’m here for you mama. Email me anytime. Good luck in your journey. And as another amazing blogger told me when I first started…Slay them dragons! That meant so much to me!!

      • I’m a nurse of 12 years with 6 years experience with disabled children, and then we had two Autistic boys of our own, one quite profound (6 y.o.) but out younger one (4 in 2015) looks and behaves very similarly to Cooper. We’ve grieved for their loss of a full life, for our misery in dealing with their uncontrolled behaviour, but it is as it is, and we have to do what’s best for them and us. We speak to them and wait for a response, giving them time to listen, think, think a bit more, forget what’s happening, then go back to thinking…then form a response with gentle guidance and time for them to change their mind as they choose…..their instant response isn’t always what they really want. It’s a tough road for everyone, a long road that needs to be a patient one. Because of their delay they need simple requests and plenty of time to respond. Gentle, simple, positive and patient interaction.
        Best wishes to everyone looking after anyone on the spectrum.

      • Hi
        I have a five year old son who is autistic and non verbal. He is saying some words on his own terms and gets frustrated very easily. Although i’m trying my best and doing different activities with him but I still feel as if i’m missing out on something else that I could do to help him. I am so scared and worried for his future. I know exactly how you feel and pray that God gives you a lot of mental and physical strength and guide you through you journey with your child. This journey is not an easy one! It may seem like a long, dark and a lonely one but remember there is always light at the end of the tunnel! Take a day at a time and keep on going.

  2. Hey There 🙂
    Thanks for stopping by my blog. I read through your story and Coopers story. I will read your posts later today but I just wanted to say that you def shouldn’t get discouraged. It seems like Cooper is already making progress and I believe he will continue to do so. If you read any of my posts from 3 years ago (or older) you will see a huge difference in where my son was “speech wise” back then compared to now. His language development has been a giant sized part of my writing. When my son was 3, he also wasn’t using any sounds other than vowel ones and 2 months after he turned 4 he said he loved me for the 1st time. (Still without pronouncing the V sound). Now, even though he’s not as advanced as a typical 6 year old, he is quite the little chatter box. Hang in there. I think reading other peoples stories and writing about your own is huge and has helped me a lot in this life.

    • Really?!? He said ‘love you!’ My heart just aches as I read your comment. I want it so badly I can taste it. I tell Cooper I love him 100 times a day. Just once I want to hear it back. For now, I settle for a ridiculous amounts of hugs and kisses! I am going to read your blog back a bit too. I want to read about the language specifically. Thanks!

  3. My tears just fell when I read he jumped. Way to go! My 3yo has delays in speech too. We relied on sign language up until she was 2. She mimics but has the tendency to turn the consonats around. Like snow, she says it as nows. Improving though. She can come up with 3 word sentes. She talks a lot but we can’t understand her sometimes. It can be painful to wacth if you think about what other kids her age can already say. I have learned never to compare her with other kids anymore. That way I can focus on her improvements. Sending you hugs and prayers.

    • Hi there! I feel the same way when I read about other kiddo’s finally jumping. It is the best victory! I totally understand the pain of seeing other kids. I’ve even had to avoid facebook at times. Sending you hugs and prayers too!

  4. I stumbled across your blog via “Normal Is the New Boring” blog. First….Cooper is a lovely boy who has an amazing Mom. Take a deep breathe and know you are not on a sprint but on a marathon. It is so hard when you sit with all the professionals and they tell you what your child can’t do and you feel like you are not getting answers or enough forward momentum. I have been there…..I’m in the trenches too but my son is 6-1/2 now. I remember what 2 and 3 felt like when he was non-verbal and we were at the beginning of an Autism diagnosis. Feel free to drop by my blog and share in my son’s journey to know you are not alone *hugs*

    What has helped my son? He has Apraxia and we were told the same thing by SLP’s that he had to make sounds before they could say “motor speech delay.” I would get a second opinion but from a speech pathologist who specializes in motor speech delay. My son did vowels first too which by the way are the hardest sounds to do first. I found out our son was showing the apraxia before he could make sounds etc by opening and closing his mouth like he was trying out the movements but couldn’t get the words out. Gross motor delays go hand in hand with it too.

    MORE THAN WORDS by Fern Sussman from the Hanen Centre is amazing. It is a program that teaches parents how to get communication happening in our everyday lives in a way that is manageable for our daily lives and makes sense. You can order a book and DVD, attend work shops or get book from the library. This was a game changer for our family.

    PROMPT method of speech therapy. It’s an amazing method where the SLP touches the face and jaw to help the child find the sounds. More and more SLP’s are using this method.

    I am going to read more of your blog over the days to come but I hope some of this gives you solace:)

    • Hey there. I just spent some time on your blog as well. So glad you found me. Our sons sound very similar you are just a few years ahead of me. So question for you. I have heard that a ‘typical’ apraxia symptom is that kids can’t make vowel sounds. I am not sure if that is true or not. Cooper (and your son) seem to be the opposite. And you put that vowel sounds are harder? Cooper very rarely makes any sound with the front of his mouth. Everything comes from his throat. He does blow and suck air so that is good. And will make the ‘m’ and ‘n’ sound if prompted. When did your son start making the non vowel sounds?

      • Hi 🙂 Well Johnny started making non vowel sounds again when he was 3-1/2. It began with Mama, Dada, wompa, babee and I would say it went to 10 sounds he was using for words consistently. When he was 4-1/2 the SLP at the Hanen Centre “More Than Words” told me she wanted him to work hard on vowel sounds because she could see by watching his mouth move he was trying to do them already by the way he was moving his lips/mouth but no sound would come out. She wanted to build on his sound approximations by moving toward word approximations by getting him to say part of the words and gain confidence and loosen up his face muscles. My son has always had a beautiful smile but when he tried to speak or make sounds it was like his face was so tight. So the vowels were like instead of trying to say “Sara” she said say “Air-ah” We would pick 5 words that we wanted him to try and we would do this and it seemed to jumpstart things. Especially since he would go around and point at stuff and grunt from the back of the throat already so we had some sounds to work with. The School Board Autism SLP was in disagreement and wanted to concentrate on the non-vowel sounds first. I have to say that the other SLP’s idea seemed to loosen up his jaw/face muscles and seemed to get him to take more risks and really try and make more sounds because he could hear it was working.

        I do have to add that every child is different and I had professionals telling me that he should make this sound etc but I have sat in on motor speech therapy and heard the SLP be surprised that he could make a sound (a letter) that was not expected at this point. He was jumping ahead:) She told me its not always so cut and dry but the SLP’s know the order of letter sounds that kids are expected to achieve and the order they learn them “usually”. I will try and dig up some stuff in my son’s file for you but here is what I have on hand:

        3 years old: M P N H W
        4 years old: G B T D F K

        Again my son pushes very hard when it comes to sounds because the SLP’s discovered that by 4 years old he has spent a lot of time listening to everyone speak and understands language, how the words should be said, correct sounds etc. But the problem is that even though he knows this its like aiming at target A and your brain keeps saying hit target B. Lots and lots of practice and achieving certain sounds first that will trigger and trick the brain to try a more complex sound. i.e. the T sound. My son could do the D sound so the SLP switched out the letter T for words that began with the letter D. We had him practice over and over and then slowly try to show him using PROMPT how to do the T sound. It worked because the letter D puts the tongue in the right place for the letter T to come. 🙂 I know how hard this all is and like I said earlier…this is a marathon we are running with our boys. Cooper is communicating with you and there is more then one way to communicate. What you are doing and he is doing right now is a big start:)

        BTW have you tried using PEC’s symbols yet? A simple “I want” strip? This helped my son as well quite a lot because he’s a visual learner and he was able to get folks at school to listen to him etc

    • Yay! I am so glad you like it. I am pretty honest on this end. Before I started blogging I felt so alone. I was really struggling to find someone who could understand what I was feeling and going through. And then I started to think maybe I was crazy! And then I ‘met’ all of these other moms with kiddos like Super Cooper. And it changes my life!

  5. Wow, Kate. This blog is absolutely beautiful. Raw, honest insightful and essential. Keep on logging this journey, you brave, amazing mama. I wish you, Cooper and your family all the very best of the bestest.

    • Thank you lady! You made my night. When I started on this journey with Cooper I found blogs that changed my life. I need to read about other kids and parents that got through it. I hope I can do that for other moms as well.

  6. Im so happy i found this blog! I have 2 sons Ryder is 4 next week and Jackson is 2 in september. Ryder by 18mths, had no words, no pointing, no waving, no nods for yes or no and very inconsistent eye contact. I knew he loved to cuddle and play and would give you periods of eye contact. He just didnt play like other kids. Wouldnt notice other toddlers playing alongside him. Hed look but never truly engage like my friends kids. I was scared and on edge about everything he did. Id watch every movement and try to read into it 1000 different ways. We started Early Intervention with OT and Speech. I knew in my heart it wasnt Autism but scared it was! What a rollercoaster. I just had no answers nor could any therapist put a finger on it. Some sensory issues but none that stood out. Motor planning was a struggle and he had some transition issues. Well at about 2.5 to 3 he became a whole new kid! Answering to his name, speaking understandable words, back and forth play and loved to play with kids! I was overjoyed. He continues speech 1 hour per wk but just a delightful little boy. Now i have 22 mths old Jackson to deal with! Ugh. Again, no words, just started giving high 5s and does like to clap, although that takes time to get him to do! He still wont really give anyone much eye contact or wave. He does make noise all day mostly ahs and ohs but filled with intonations. He is a SENSORY SEEKER! Lucky me! Climbs everything, runs head first ( he has very low muscle tone upper body) headstands on everything, chews on toys and grinds teeth sporadically, digs in sand with hands, loves loves swings but also loves slides. He eats pretty well but some days will taste something then spit it out. He gagged and puked his first dig into the bean bucket! He can do it now but does something funny with his mouth so i know he doesn’t totally dig it! Hes fine on his back during changes but just non stop alllll day long. He fits some of the signs but doesnt others so its just a wait and see game with him. He is seeing an OT and a speech therapist. Behaviorally he is pretty good. No tantrums, just appropriate responses to leaving the park or going back into carseat. I know how lucky I am that his issues seem manageable but its still heartbreaking that we are walking this unknown road again. I can only pray his achievements are like Ryders.

    • Hi there. Ryder sounds SO MUCH like Cooper!! I so get the roller coaster. And the unknown. And the fear. I think us moms with kids like Ryder and Cooper totally get it. We can all relate. And describing it to other moms is so hard. When I started finding blogs it changed my life. I felt like I wasn’t alone. Good luck with Jackson! I am here for you mama!

  7. Agreed! My friends don’t get why I can’t just go on vakay with them and all of our kids! Ummm 2 ot appts per week and 3 speech per week. And my kid is a wrecking ball! Youre right in that they cannot understand a typical day for us dealing with any delays or issues with our kids. My life revolves around doing the most I can right now for my boys. Brushing, joint compressions, upper body work, compression weighted vests, teaching signs, sensory exercises and it goes on! I never knew this could be part of motherhood but i wouldnt trade either for the world. Those faces! But 8pm is awesome time for me! Na nights and mommy time!!

  8. Stubbled across your blog, and my goodness its like reading my diary (if id ever bothered to write one) lol,,,my 6 year old son is nonverbal autistic. He has no words at all, but is never quiet, always making noises. He was born with a severe hearing loss and has bilateral cochlear implants and seemingly now has a good level of hearing. I can’t believe the incredible similarities between our boys going by your blogs, I was wondering do u have a Facebook account or an email address, I would love to talk to you some more about our experiences XXX Shelly

  9. Hello, my son is autistic also. He started to talk at 7 months but after vaccines he didn’t talk until he was 6 years old. Your son seems to be on his way, YES!!! Way to go Cooper!! & Mom!! What I found that helped was sitting at the computer for at least 6 hours a day with my son on my lap. When he started to talk at 6, he never quit, LOL! They he talked all day. There are so many extremes and it can be exhausting but he talks!! Thanks for your post!!

  10. Just a random thought…would you like to connect with each other on facebook? I would love to connect with you more if you would be happy for that. I think about you loads! Much love, Miriam Gwynne

  11. It’s been close to two years since I left a comment and I cannot believe I haven’t kept up with your blog 😦 my son who will be 4 in May was just diagnosed with autism. I remember the day I came across your blog I was in tears! thank you for being so open and honest with your journey 🙂 ❤

  12. It’s been over five years since we worked together at LSS, but I still remember having lunch and taking a coffee break now and then with you and talking about life. I think your website is absolutely amazing, so real and candid… and your family is beautiful. I can’t stop reading…I’m not sure if I told you, but my only sibling is my younger brother, Michael, who is 28 and on the spectrum, and diagnosed with “Landau Kleffner” syndrome. I would really love to touch base sometime. Also, I just want to say that my brother has definitely been my biggest teacher and without him in my life, I wouldn’t be the person i am today. Cliche, but so true. Love ya, Kate!

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