Hellobee

This is part 2 in a guest series from mamapink whose 3-year-old daughter Ayla who was diagnosed with PDD-NOS on the autism spectrum last year.

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What does your daughter’s diagnosis of PDD-NOS mean?

My daughter was diagnosed with PDD-NOS, Pervasive Developmental Disorder – Not Otherwise Specified, back in October of 2012. She was 2 and a half at the time. Starting May 2013, the new DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) will stop differentiating Asperger’s Disorder and PDD-NOS and will start grouping all of them under the big umbrella of Autism Spectrum Disorder. Had Ayla been diagnosed after May, she would have just received a diagnosis of Autism instead of PDD-NOS.

PDD-NOS is often called Atypical Austim because it doesn’t always follow the traits/criteria that are set for Autism. Although PDD-NOS is considered a milder form of autism on the higher functioning side of the spectrum, it is not always the case because though certain characteristics or symptoms may be on the milder side (eg. Ayla is verbal and considered HF), some of the other characteristics might be severe (eg. Ayla’s sensory integration issues and behavioral issues).

Ayla’s developmental pediatrician mentioned that she is very borderline and that she may be classified as having Asperger’s Syndrome when she’s older depending on how she progresses. Asperger’s Syndrome is also part of the Austim Spectrum Disorder but on a much milder (high functioning) side of the Spectrum. Our doctor gave us the choice of whether to give our daughter an official diagnosis or to not give a diagnosis at all, but we all agreed that it’d be best to receive an official diagnosis in order to guarantee proper treatments for her.

How did you feel when you received her diagnosis? Did you “know” all along?

I was having a really tough month with Ayla back in August of last year (2012). She was extra fussy, cranky, clingy, and what have you. I did not see a light at the end of a tunnel for a long time that month. I had reached my wit’s end. I ended up having a mental/emotional breakdown myself. I just could not find a reason why she was behaving in such a way. She wasn’t sick, hungry or tired and yet she was behaving as if something was bothering her. I think I cried almost every day for the entire month.

In the midst of my breakdown, I decided to search on Youtube for videos of autistic children. Just for that “maybe.” It was at 2 am. I remember that night so distinctly! I was completely drained from the usual daily struggles with Ayla. She had just fallen asleep a little past 1:30 am after struggling to go to sleep for over two hours. I watched the first video that popped up on my YouTube search on my phone, and I immediately started to sob uncontrollably. All it took was that one video. I just knew it then. I got the confirmation that I needed. It was as if I didn’t even need a doctor’s diagnosis.

All the missing pieces of the puzzle then started fitting together and forming a complete picture in my head and finally making sense! All those questions we’d had for the past 2 and a half years were slowly being answered. The videos spoke louder than anything I had ever read about autism. I read so much about autism prior to watching those videos that I thought I knew what autism was, and I thought that Ayla wasn’t it. By watching those videos though, I felt like I had finally found people whom I could relate to and who could relate to me. Finally! Prior to that I always felt so utterly alone. I would speak to other parents and mothers and I found myself being more frustrated and misunderstood. I felt like nobody understood my situation and no one really tried to understand it either. They either attributed it to my inexperience with motherhood, or to me making a big deal out of nothing. “All children go through that, don’t worry about it” or “things will get better/easier” or “it’ll pass” but they never really did for us. If anything, it seemed like they were getting more challenging as time went by.

Watching those videos was a life changing night. I stayed up almost all night watching one video after another, and the more videos I watched the more confirmation I got that Ayla was in fact on the autism spectrum. Even though I felt like I knew it all along, getting a concrete confirmation like that just crushed me to the core. I remember crying every day after that night for a good two weeks. I first felt grief. Mourning the child I expected Ayla to be. Mourning the future I thought Ayla could have. Mourning my motherhood to a “normal” child. Feeling pity for myself and for Ayla. Feeling extreme anger and bitterness towards everyone! I think it was one of the most difficult periods as a parent thus far.

Whenever I passed by a child around Ayla’s age, sitting nicely in a restaurant highchair or inside the child seat on a shopping cart and having back and forth conversations with the mother, I would tear and think “Ayla can’t do that and she won’t be able to do that ever at that age.” Other people tell me that’s a reason I should have another child. But whenever people ask me if I want another child or when family members tell me I should have another child, it just breaks my heart all the more because I don’t want a new child to do those particular things. I want Ayla to do those things. She cannot be replaced. It’s kind of like when you lose a family dog. You can get a new dog to help you cope with your mourning of the old dog. It may bring you new joys and happiness, but in the end that new puppy can never ever replace your old dog that just passed away.

In my emotional despair and desperation I searched ways of coping and I found this website that helped me organize my emotions. It lays out all the emotions and feelings that I went through and am going through even now, as a parent of a special needs child. It has no particular order. It’s different for everyone and it may come in cycles or waves. It may skip certain emotions completely. In my case I cycled through all the emotions and still am going through some of those emotions now.

Our official diagnosis from the developmental pediatrician happened two months after that fateful night. Those two months were one of the longest of our lives. Even though we had a strong hunch, the official diagnosis sort of sealed the deal. When we finally received the diagnosis, it was a relief! Now all there was left was to look into ways of helping our daughter and getting her the proper therapies.

How has your spouse and family reacted to your daughter’s diagnosis?

My husband and I communicate via text messages on how Ayla is doing each day. It was a daily routine for me to text my husband Ayla’s mood for that day which was often “cranky and clingy,” so my husband knew to help me as much as possible when he got home from work that day.

When I watched those videos on autism on YouTube, I immediately forwarded them to my husband. When I asked him about them the next day, he said it was as if there were peeled onions in the air, meaning that he had cried too, because he too knew that Ayla had autism based on those videos. So my husband was on the same page as me. I also shared them with my older sister who is my second mom and my confidant and whom Ayla absolutely adores. She also reacted the same way. The three of us, who knew Ayla the most, just knew.

Let me just put it out there that I don’t think YouTube videos are a good source for a diagnosis for any child and that parents should definitely seek out professional help and guidance when it comes to diagnosing your child.

When we got the official diagnosis from the developmental pediatrician, besides the three of us, the rest of our families were sort of in denial or just unaccepting of Ayla’s diagnosis because she looks so seemingly normal to them. The grandparents on both sides of the family kept on telling us that we were making a big deal out of nothing, that Ayla was just a bit delayed and that she’d eventually grow out of it. Both grandparents would tell me stories of people they knew or even of how their own children were delayed and had received special therapies at school, or how difficult their firstborn was (my husband and my sister), etc.

Though I understood where they were coming from, being from the old school days where you just tough it out or you just simply grow out of it, it was still frustrating not getting the emotional and psychological help and affirmation from them. It was almost as if they were trying to discredit my parenting — something I was already feeling from other parents telling me I was making a big deal out of nothing when I complained about how difficult Ayla was. They were invalidating me, as if I wasn’t competent enough to be a mom, or not competent enough to handle minor hardships that a “difficult child” may bring. After all I only had ONE child; how hard could it be? Back in the day they raised 3, 4+ children on their own without much help.

Many months went by before both grandparents conceded (to an extent) that perhaps Ayla was on the autism spectrum and that she did need help. I still don’t believe that they fully agree with Ayla’s diagnosis and I don’t believe that they ever will, but I do believe that they still love her and will support us no matter what, and I think that’s all that matters now.

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In the next installment, Jen shares her experience with Early Intervention Therapies.