Caelan's Journey: Part 1 The First Diagnosis

One of the reason's I started Mommy Dearest and blogging again was to share our journey. Though our life in pictures on Social Media looks very much normal, it isn't and I wanted to give a glimpse behind closed doors.

Our oldest son Caelan has High Functioning Autism Spectrum Disorder and 2 other Comorbid Disorders, A.D.H.D Combined Type (Attention Deficit Hyperactive Disorder -CADDRA)and G.A.D (General Anxiety Disorder) . [Comorbid  [koh-mawr-bid]Adjective 1. (of medical conditions) present simultaneously in a patient: comorbidinsomnia and anxiety; depression comorbid with phobiasdiabetics with comorbid hypertension  Origin of Comorbid 1908-85; co + morbid (in the sense "associated with or characteristic of a disease) Comorbidity Noun
Dictionary.com Unabridged
Based on the Random House Dictionary, © Random House, Inc. 2018.]2


Prior to having any official diagnosis in the household my husband and I were very ignorant to any of these, it wasn't because we didn't want to know or be compassionate about them, but we never understood them, and really never had a reason to. There is such a stigma around Mental Illness that we were not the only ones who were oblivious to these. That needs to change, so he we are. Just because these affect our lives we are by no means experts either, we are still learning new things each and every day. However we are now more compassionate and understanding than we had ever been. 

Caelan was always a bright and curious boy, he was always energetic, it was sometimes like living with the Energizer bunny. He wasn't big on cuddles unless he initiated it, but he was such a sweet kid. He was always looking out for others and very particular in his methods. He wouldn't sit still to watch an entire movie, he was on the go, he would play nicely with his toys, but enjoyed spending his time running, jumping and climbing. Someone told me after I had him that Life with Boy's was not for the faint-hearted, they weren't kidding. Some would call him quirky, but we love him immensely, quirks and all.  I remember an acquaintance once made a comment when Caelan was 2 that he must be A.D.D (Attention Deficit Disorder)  because he was walking on his toes. It irked me in the wrong way. How dare you, someone outside of our home make an assumption like that. It didn't sit well. Though I didn't think much of it at the time. {Though walking on ones toes can be a common trait of A.D.H.D and other comorbid disorders it doesn't necessarily mean that your child has any of these. Many children at some point walk on their tip toes.}

Nothing really set off any 'alarms' or red flags to us until Caelan was in Grade 1 to be precise. He is a December baby so he started school when he was still 3. He has to this day, been the youngest in his class. (His birthday is at the End of December). Even after starting school it wasn't evident to us. Academically he was doing very well. His Junior Kindergarten teacher who noticed his high energy, didn't think much of it, as most children at that age are still developing. He had an aversion to reading and writing(which we attributed to laziness) but other than that he was where he was supposed to be.

Nearing the end of Senior Kindergarten his teacher (Who happened to be the S.E.R.T {Special Education and Resource Teacher}) mentioned that he was starting to struggle socially and was lacking some of the self regulation that other students had already developed. By self regulation I mean getting himself dressed for recess, pulling out books when required etc. He was unable to sit still for long periods of time, but she was able to address these and came up with a mini plan of action to help him get through the remainder of the year. I mentioned it to our family doctor who at the time didn't see any reason to further investigate as he was still very young. (We wholeheartedly agreed with her, Caelan had only just turned 5 and was still developing and maturing)

Grade 1 was the year from hell and the year that every bell and whistle and alarm went off. I was thrown into Mama Bear mode on more than one Occasion. That year Caelan had 4 different teachers, (there wasn't a lot consistency, other than the fact that his teachers changed daily and sometimes more than once in a day). I was very pregnant with my Second. I was due in a few weeks and I was ready for this baby to be out. I remember one of his teachers called me aside almost every day to let me know that Caelan had been spinning on the carpet and wouldn't sit still, or was taking too long to get ready for recess. They suggested I have him "tested". Behind raging pregnancy hormones, I suggested they try some of the techniques that we had adopted the year prior as he was still too young to start the testing process, there was still time for him. I was met with great reluctance. Forward to a few weeks later and I have literally just pushed our second child out 48 hours prior. Caelan had gone to school and he was super excited the share the news and pictures of his new baby brother with his peers. After school that day the teacher calls me out in the school yard in front of all the other parents. They said I needed to do something about Caelan, he needed to be tested and put on medication. The only way I can describe my feelings were Pure rage was now flowing through my body. I could feel my temper rising and I was a bomb about to go off. (Post-Partum Hormone Explosion) It was lucky that the stroller was between me and the Teacher. I went home got the boys settled and cried my eyes out for hours.

At home everything was fine, or at least up until this point it had been. We knew there were going to be some adjustments, we just brought a new baby home who would require loads of attention, my husband had just started a job working away from home for extended periods of time, there was going to be some sort of reaction from Caelan, it was expected. A few weeks had passed and he started having these 'episodes' we will call them in the evenings. We would finish bed time story and within minutes he would be in tears telling me his tummy was upset, or he had a head ache and that he couldn't go to school. It would take a while but we would finally get him settled and it would start all over again in the morning before school. If we didn't have a meltdown before school it was as soon as the bell rang. It was awful to watch and it wasn't much easier to deal with. He would come out of school and have literally chewed holes through the neckline of his shirt. This was a huge red flag for us. I called our family doctor immediately. After doing an assessment she referred us to pediatrician. This was the first time my heart broke for him, and it continues to break with every meltdown and struggle to date. 

We had no idea how long of wait it would be to get into pediatrician, but we lucked out and got in rather quickly. Before having our initial appointment she asked us to fill out this paperwork from CADDRA ADHD ASSESSMENT 3(to give you an idea of the forms we have filled out) and sent us for a slew of tests, blood work, hearing and eye tests, etc. It was a long process. By Christmas that year we had our last appointment of the Year with the Pediatrician and she gave an Official Diagnosis of A.D.H.D combined type. This means that Caelan has both Hyperactive-Impulsive type and Inattentive Type. This is the most common diagnosis for A.D.H.D. She also documented in the letter to the school (After reading the teachers outlandish comments on reports and forms, we realized the teacher wasn't a great fit for Caelan and he basically had a target on his back and would have a very trying school year) that Caelan had school related Anxiety that would later be labelled G.A.D (Generalized Anxiety Disorder). 

This was a huge pill to swallow. There must be a mistake. This couldn't be happening. Had I done something wrong? Was it because I didn't know about his pregnancy until almost 6 months? Was there something we could have done differently? We had family members telling us there couldn't be anything wrong with him there was no way. We had a professional diagnosis but how did we get here? Where do we go from here?

Our pediatrician explained to us as best she could and we had lot of homework to do. We had lots of reading to try and understand what our son was going through. At least now we an answer, he wasn't struggling because he was a "bad" kid, or acting out because we were bad parents, he literally couldn't control his impulses and lacked the executive functions that others have. We would need to adjust our parenting, as things we had done in the past weren't going to help us move forward or help Caelan.

He now has an I.E.P (Individual Educational Plan) in place, (though this is not strictly for his A.D.H.D it does include some strategies to help him with it.) and though he still struggles, we work together as a family and with the school to help him succeed. It wasn't until last year, the second half of Grade 2 that we started the testing process for A.S.D, (though that is for another blog post) 

This was one of most difficult posts for me to write so far. I thought the words would have come easier. I've felt guilt, anger, confusion, sadness, sympathy, and a whole other array of emotions that I can't even begin to describe. We have spoken to family and close friends but had never really reached out. I found that because of the Stigma there is lack of support for parents in the way of speaking with other parents who are going through similar situations. Though I have joined several online communities and received support from complete strangers, it is often not the same as face to face interactions. 

We have hit many bumps in the road, but this road has brought us to where we are today, and has made us better for opening our eyes and becoming more compassionate and educated towards Mental Illness. We have worked very hard as family to get where we are today. In comparison to 2 years ago we are leaps and bounds ahead, though we still have a long way to go, we now have a starting point, we have a reason, we can only move forward from here. We can now plan, learn and grow together. 

Though the labels they give you don't define you, they give you a starting place to develop a support system to help you grow.

~Mommy Dearest

A.D.H.D
Take my hand and come with me
I want to teach you about ADHD 
I need you to know, I want to explain, 
I have a very different brain
Sights sounds and thoughts collide
What to do first? I can't decide
Please understand I'm not to blame
I just can't process things the same
Take my hand and walk with me
Let me show you about ADHD
I try to behave, I want to be good
But I sometimes forget to do as I should
Walk with me and wear my shoes
You'll see its not the way I'd choose
I do know what I'm supposed to do
But my brain is slow getting the message through
Take my hand and talk with me
I want to tell you about ADHD
I rarely think before I talk
I often run when I should walk
It's hard to get my school work done
My thoughts are outside having fun
I never know just where to start
I think with my feelings and see with my heart
Take my hand and stand by me
I need you to know about ADHD
It's hard to explain but I want you to know
I can't help letting my feelings show
Sometimes I'm angry, jealous or sad
I feel overwhelmed, frustrated and mad
I can't concentrate and I lose all my stuff
I try really hard but it's never enough
Take my hand and learn with me
We need to know more about ADHD
I worry a lot about getting things wrong
everything I do takes twice as long
everyday is exhausting for me
Looking through the fog of ADHD
I'm often so misunderstood
I would change in a heartbeat if I could
Take my hand and listen to me
I want to share a secret about ADHD
I want you to know there is more to me
I'm not defined by it you see
I'm sensitive, kind and lots of fun
I'm blamed for things I haven't done
I'm the loyalist friend you'll ever know
I just need a chance to let it show
Take my hand and look at me
Just forget about the ADHD
I have real feelings just like you
The love in my heart is just as true
I may have a brain that can never rest
But please understand I'm trying my best
I want you to know, I need you to see

I'm more than the label, I am still me!!!! 
~Author Unknown




1. CADDRA https://www.caddra.ca/public-information/parents/ 

2..American Psychological Association (APA):
comorbidity. (n.d.). Dictionary.com Unabridged. Retrieved January 9, 2018 from Dictionary.com website http://www.dictionary.com/browse/comorbidity
Chicago Manual Style (CMS):
comorbidity. Dictionary.com. Dictionary.com Unabridged. Random House, Inc. http://www.dictionary.com/browse/comorbidity (accessed: January 9, 2018).
Modern Language Association (MLA):
"comorbidity". Dictionary.com Unabridged. Random House, Inc. 9 Jan. 2018. <Dictionary.com http://www.dictionary.com/browse/comorbidity>.
Institute of Electrical and Electronics Engineers (IEEE):
Dictionary.com "comorbidity," in Dictionary.com Unabridged. Source location: Random House, Inc.http://www.dictionary.com/browse/comorbidityAvailable: http://www.dictionary.com/Accessed: January 9, 2018.
BibTeX Bibliography Style (BibTeX)
@article {Dictionary.com2018,
    title = {Dictionary.com Unabridged},
    month = {Jan},
    day = {9},
    year = {2018},
    url =
 {http://www.dictionary.com/browse/comorbidity},
3. CADDRA https://www.caddra.ca/practice-guidelines/ (CAAT) https://caddra.ca/pdfs/caddraGuidelines2011References.pdf 

Comments

  1. My youngest has ADHD and it's a daily struggle. We decided to medicate and it's made all the difference in the world.

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    1. We did eventually decide to medicate and it does make a huge difference, we are still in the battle of finding the right medication though.

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  2. I couldn't imagine what you have gone through as a parent. My oldest daughter was diagnosed with ADHD in first grade, but honestly she was on medication for two years before I pulled her off of it. I don't think she ever had it, it's just a label that they wanted to give her because she was such a talkative free spirited child.

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    1. I agree that from what I have read far too often are children labeled without actually going through the entire process. It's a difficult road to go down. I know loads of people who don't medicate. It is a tough choice, and it is very situational. I also know that girls present symptoms far differently than boys do. There is absolutely nothing wrong with a talkative free spirited child. I wish my son was more talkative.

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  3. my sister has ADHD and it took several different medications before they found one that worked for her. Once they found one that worked it made a huge difference for her!

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  4. It's scary how much a teacher's prejudice and horrible attitude can affect a child's life (ADHD or not). Glad Caelan is over-coming all the obstacles placed in his way now. I haven't had much experience with this disorder but I do believe everyday people are becoming more and more understanding and aware with this and similar disorders which is a step in the right direction.

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    1. It absolutely is a step in the right direction. I think the first step is breaking the stigma and talking about it.

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  5. It's so nice to see a post talking about mental health. I can't even imagine how difficult it must be as a parent. Thank you for sharing your story!

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    1. I think the first step in Ending the Stigma is talking about it. Mental Health is such a vast area, and unfortunately hasn't had much of a positive light on it.

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  6. You are so amazing for writing about this. My friend's child has been going through this process recently but it's taken years for her to be heard and she's a lot older. An earlier diagnoses would have helped them so much. There needs to be so much more awareness and there needs to be education for parents who don't deal with this so that they can teach their children to be better.

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  7. wow, what a story..you all really went through it! there is so much stigma about mental illness, and i so proud of people who talk about, i cant imagine how much of bumoy road your family have been thorugh, your sons soo lucky to have your support, even though i can imagine at times it was very testing! thankyou for sharing your story- its people like you that will help others parents :)

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  8. It's hard for me to understand what parents go through with kids who have ADHD! I have friends and family who are going through this. I'm so glad more and more posts are being written about mental health.

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  9. I can't imagine what you must go through. What a great story your sharing. Not sure if you into essential oils but copaiba is shown to help with ADHD. Google its, it has ton of support for this.

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    1. Just heard about the copaiba oil and I'm looking into it. I recently stumbled across a post about it.

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  10. Thank you for opening up and sharing about mental health! I can't even begin to imagine what it must be like as a parent to go through that.

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  11. Hey there. I am a pediatrician and this really hits close to home as I see many patients battling ADHD, Autism and various other behavioral disorders and conditions. It takes strong persistent parents to take care of these kiddos, I commend you and all the other parents who fight and advocate for their children. <3

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    1. Thank you, I had no idea until we faced this ourselves that so , many others struggled as we do. I realized I am my son's best advocate and I can shed just a little bit of light on it, it may make a difference in someone else's life. I commend all the pediatricians that have hundreds of patients and have been so helpful to parents like myself.

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  12. I'm so sorry you're going through this! I had my son tested for Autism at 3, I had my reasons with my BA in Psychology. Which they found Sensory Processing Disorder and a delay.. We still have our struggles and know he's extremely gifted, which goes hand and hand with ADHD. Most parents don't find out into first grade, and won't diagnosis them until then anyways.

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    1. I will be posting about the Autism Diagnosis later on this year, but I can tell you, that had you asked me years ago if I thought it, I wouldn't have batted an eyelash, maybe because I didn't understand the way I do now, but once we started the process, and I was looking back there wasn't a doubt in a mind. It can be difficult for parents. We went to a workshop shortly after the diagnosis and we learned that so many had early signs and diagnosis at such a young age, we missed it by a longshot and didn't get the diagnosis until he was 7. That being said earlier diagnosis would have given us an opportunity for therapies, support and resources that unfortunately are not readily available at this time. You don't understand it truly until you are in a room with hundreds of other parents who are going through similar situations.

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  13. As a former school principal, my heart aches for your son's school experiences. I realize that not all teachers can know how to work with children with ADHD, but surely they all know how to work with grown ups. It is important to find the right teacher for the student, though, and advocating for this will be your biggest hurdle. We should talk some time about strategies for navigating the school system. :)

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    1. Thank you I appreciate that. It was a very trying year. I swear though as soon as the second diagnosis was confirmed and I brought a letter to the school, things changed. But it also broke my heart that one seemed more important than the other. I don;t expect everyone to know how to deal or work with children with ADHD I think I wanted a little more compassion. We have made leaps and bounds in progress since then, but still have such a long way to go. I would love to hear your strategies.

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  14. I can only imagine what you've been through and all I can say is that your son is lucky to have parents like you just as you are lucky to have him. I'm sure it's quite a journey ahead but with your guidance and love, it's all going to be okay.

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  15. I think it is amazing that you are openly talking about it. So many moms are ashamed and keep it to themselves but then they feel like no one else gets it and they have no support! It is important we bring light to the struggles!

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  16. That is a lot to take on as a parent and as a kid! Good job advocating for your child and doing what you needed to do.

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  17. first of all, what a cute kid! It sounds like you did the right thing. What an awesome mom!

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  18. I feel for you i am sure this has been so hard for you but I hope sharing helps you with some support. One thing I am sure of is this was not your fault and I can see you are working so hard to help him.

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  19. My 9 year old was also just officially diagnosed with ADHD last year and I feel all of this. That poem made me cry because I’m sure this is exactly how he feels. It’s hard work but I know that we have some amazing resources in place for him this year.

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  20. You are amazing, just by sharing the journey with ADHD and your family history with others

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  21. I hope other mums ca also talk about such experiences openly. It would reduce stigmatisation and there would be more support. Sorry about all that you have endured.

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  22. I’m so glad to see this being discussed more openly. I have a few friends that have children with ADHD and could use some other stories to help them deal with some of their struggles! - Jeanine

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  23. You're incredible for choosing to share this journey because I'm sure there are so many families that need to hear this. You are not alone and have opened your experience so others can feel like they aren't alone too.

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  24. How awesome of you to share your story! I know a lot of people think they don't need help, but I am glad that you are erasing that stigma!

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  25. I'm so glad you shared this! My son has Autism and ADHD--it can be tricky some days. He's also on an IEP. You are a wonderful mother.

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  26. It was quite an experience and I'm glad he has supportive and loving parents like you to help him through all of this. I also appreciate that you're sharing this because it helps other parents who are going through the same thing.

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  27. This is something very close to my heart. Unfortunately in today's world this is getting more and more common. Thanks for having the courage in writing this.

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  28. You are an amazing mom and you're doing your best for Caelan. I hope to hear more updates about him soon.

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  29. I grew up as a kid with ADHD, I am 30 year old and doing fine with my life. All the best to your son in future.

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  30. I bet it is such a stressful journey to have to go through trying to get a diagnosis for your child. Thank you for sharing.

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  31. Well my younger brother have Asperger's and this is totally oposite. He can't share his feelings and he is totally asocial.

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  32. This is such a touching story and the poem is truly amazing! ADHD is becoming diagnosed or and more and that is very great because it can be very sad to see kids struggle.

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  33. Thank you for sharing your story with everyone! We are in the middle of getting my son an ADD diagnosis. I love how open you are about your experience!

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  34. Wow, that is some story. I have not had any experience with this but I can’t imagine what you have gone through as a parent. I think that it is an amazing story and you are helping others by sharing it. You son is so cute and adorable.

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  35. It's sad to hear of this diagnosis. I just wanted to say that you are such a brave mom and I wish you the very best with your family.

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  36. It sounds like he was blessed with wonderful parents who paid close attention. Many kids have to suffer through this their entire life with everyone writing them off.

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  37. Wow your son has quite a few challenging diagnoses there. I used to work for an ASC service so now how tough it can be for the children and their parents / families also. Thanks for sharing your story and raising awareness. He looks super sweet too :)

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  38. Thank you for sharing your experience with ADHD. I'm sure it has been quite the journey so far but it sounds like your son is in good hands.

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