This is going to be a post that I have been wanting to write for a very long time now. I enjoy blogging and sharing my life with others. I think social media and blogging are an absolutely amazing thing. It allows us to be able to connect with people from all over the world. It allows us to read about others going through a situation in life and know that we are not alone. I follow so many amazing bloggers who I connect with in so many ways and it allows me to learn things from them and communicate with someone who might be going through the same things in life. And my life are my kids. So in order to share my life story with you I want to share about my babies.
So this post is all about my babydoll, Harbor Amelia.
Harbor turned 3 years old on November 5th, 2018.
She is always full of energy. She wakes up and hits the ground running!
She gives the BEST hugs in the world. Big tight hugs.
She is very smart and remembers every little detail.
She loves music.
She loves watching her favorite movie or show snuggled on the couch with a blanket.
She loves to color, play with play-doh, play peek-a-boo and looking out the car window to point out horses.
She loves running up and down the hallway with her baby brother while laughing and giggling.
She loves to pick out what she wears for the day. Her favorite are pretty dresses.
She loves to go swimming. She is a really good swimmer!
She loves going to parks and going down the biggest slide.
She loves to help cook. She's going to be an amazing cook like her Dada.
I really could go on and on about all of the amazing things about my little girl.
Harbor is a very bright, intelligent, kind, fun little girl.
Harbor is my world and in the past 3 years she has taught me more than I would have even expected a child could teach a mother. She has made me think differently. View things in different ways. And has taught me to be more patient and not judge.
On September 6th, 2018 Harbor received an Autism Spectrum Disorder diagnosis.
Let me go back a bit and share our journey with you as the days lead up to her assessment on September 6th.
I would like everyone to know why I feel the need to share this post.
When we were in beginning stage of wondering, having a gut feeling but wasn't sure what it was, didn't know who to talk to, didn't know what the next step would be, didn't know how to feel about everything... I had no one to talk to. I had no one to ask questions and just felt lost. I am writing this because I want to be open and share my experience with having a child diagnosed with Autism. I want other moms to feel comfortable to reach out to me whether it be to ask questions, chat or vent.
My other reason for sharing this post is because I want people to understand Harbor. Understand the person that she is. There is nothing to be ashamed of and no reason to hold anything back. If I can help bring awareness about Autism to others with this post than I feel like I have done a bit of my job as a mother.
I had a "normal" pregnancy with Harbor. I did go into preterm labor at 36 weeks, but the labor was able to be stopped and I ended up delivery Harbor 2 days after my due date on November 5th, 2015.
My labor and delivery was a VERY long, painful and difficult one, (you can read more about Harbor's birth HERE) but she was born healthy! 9lb 6oz perfect baby girl.
Harbor was developing and hitting milestones like any other "typical" child. She started walking at 9 months old (pretty much went straight to running). She was a great eater. I remember when we would go out for dinner with her we would order her plain chicken breasts because she loved it so much! She was always off the charts for both height and weight. She was a great sleeper. She started sleeping through the night around 4 months old.
Harbor has always been very busy. Just always on the go. Non stop. We had her in swimming lessons at 4 months old, gymnastics at 9 months old and music class at 1 years old. She just has always liked to keep busy!
She said her first word (dada) around 6 months old and started to say more words. We never felt worried or concerned. At Harbor's 15 month doctor check up (or sometime close to that age) I remember the doctor asking if she could say between 5-10 words and we said no. I didn't feel worried though. I always would say, "I think she's just too busy to focus on talking!"
It wasn't until Harbor was around 18 months old that Sean and I saw some red flags and felt concerned. Harbor at one point was saying multiple words. Hi, bye, mama, dada, rocks, more, there.. but then she stopped saying them. She at one point was waving, pointing and dancing.. but then she stopped doing them. The doctor said that she would like to keep an eye on Harbor's speech and to also do a hearing test. I knew Harbor didn't have any issues with hearing, but I knew we needed to take the hearing test to rule things out. She passed. We put Harbor on the waitlist for Speech Therapy. The waitlist in the small town we were living in at the time was over a year and a half wait time! It was insane.
I knew deep down in my gut I needed to start looking into everything more. I saw a regression in Harbor and I didn't want to wait to see our doctor in a month for her to tell us that Harbor should be saying more words by then. Now, I KNOW Google can be bad. I KNOW there are just some things you shouldn't Google, but I Googled non stop. I remember putting the kids to sleep and then sitting in bed Googling until 3am. I started to read more and more articles and links that just clicked with me and made me think, "Yes, that's Harbor. Yes, Harbor does that." I remember reading about Autism and thinking to myself, "Well no. She isn't autistic." I really just thought she had ADHD. But I kept digging. I came across a YouTube video that a mom posted about her son's Autism diagnosis and I remember just bawling my eyes out watching it. I just felt like her son and Harbor had a lot of things in common. I felt so scared. Reading the "signs of Autism" made my eyes water and my mind race. I had no clue. I will be completely honest with you. I didn't even know what Autism was. I knew it was a disorder. I had seen the commercials for "Autism Speaks", but I didn't know what it was. It felt as though in one of my nights of doing digging, Autism hit me square in the face. The word Autism meant something completely different to me. It had become my new focus in life. It was now my focus to find the answers for my daughter and IF Autism was indeed what she had.
We had another doctors appointment for Harbor's 2 year check up (November 2017) and I knew going into the appointment that she was going to ask if Harbor was saying anymore words and we would say no. I dreaded it. It made me feel nervous and a bit of a failure as a parent. We discussed looking into everything further with Harbor and I requested to see a pediatrician in Vancouver. Later that week our doctor called us to tell us Harbor's bloodwork came back normal and I remember telling her on the phone that I have been doing a lot of research about Autism and that I was very scared that is what we are looking at for Harbor. I will never forget what her response was. She said, "Ashley, that was one of my concerns as well. I think you should talk the pediatrician about your concerns and about why you feel as though Autism is what you are concerned about. Ashley, Harbor is a beautiful healthy little girl. She is going to be just fine." I cried my eyes out. I could barely catch my breath talking to her.
That night after Sean and I put the kids to bed we had a deep conversation. I told him everything I had read about Autism (he knew I had been researching like crazy), and about why I felt as though it is what she had. We also talked about why we DIDN'T think she was autistic. We paced our room, sat on the bed, held each other and cried, worried about the future together, talked about what we feared for Harbor and barely slept that night. It was almost as though we grieved that night. The next day wasn't any easier. I would break down crying randomly and just felt so scared. It was as though we were having to come to terms with the diagnosis before she even received the diagnosis.
We had our first pediatrician appointment in Vancouver in the beginning of February 2018. We flew to Vancouver for the day with the kids (very early morning and a very late night). Sean and I had wrote out a list of our concerns for Harbor. We knew that during the appointment we might miss something so we wanted to make sure and write everything down ahead of time. During the appointment we were in a tiny little doctors office and Harbor (and Cove) played with toys as we talked with the pediatrician. I remember just feeling nervous. Like it was a test and I wanted to pass it SO bad. We went over everything; our concerns, what Harbor can do, what she can't do, her now picky eating habits, her regression she had, her bowel movements, our family history and what the next step was. I told the pediatrician about all of my researching and that we were concerned Harbor had Autism. I'll never forget her response. She looked me in the eyes and said, "I think you are right. I think that is what we are looking at." My heart just sunk. That was the first time a doctor (or anyone in that matter) looked me in the eyes and agreed with me that she thinks that Harbor falls on the spectrum for Autism. My eyes filled with tears and honestly what she said after that was a blur. Sean and I had SO many questions. It was like the door opened and everything came flooding in. She gave us a lot of information and explained the next step of Harbor having an Autism assessment. Sean and I got back into the car after the appointment and we were speechless. Just so much running through our minds. It was almost as though I knew this was how the appointment was going to go, but didn't want it to.
The next few weeks after the pediatrician appointment I made a lot of phone calls. We placed Harbor on the waitlist for the Autism Assessment (in British Columbia it is covered by the government which comes with a big wait list OR you can pay thousands of dollars to do a private assessment. If a child is under the age of 3 the child can get bumped more to the top of the list).
We waited. And waited. And the time passing killed me. During this time of waiting Sean received the phone call we had been waiting for about his job. He was received a long waited position on the Kelowna Fire Department and we were thrilled! Now we had to put our house up for sale and get ready for a big move to southern BC. Once I knew that we would be moving to Kelowna soon I started to call and email places and specialists in Kelowna to get things started. I reached out to the facility where Harbor would be having her assessment and speech therapists. I also started looking into daycares in Kelowna. We wanted Harbor to go to daycare so she could play with other kids, interact and was hoping it would help her speech delay.
Fast forward a couple months and we moved to Kelowna the end of March 2018. I stopped into the facility where Harbor would have her assessment to see if there was ANYTHING I could do to get an assessment date for her. Nope, she was just still on the waitlist. I started to call every week and ask if they could please put her on a cancellation list. (they probably rolled their eyes when I said my name) JUST in case someone cancelled and I could bring her in. I asked if I could get her paperwork now and get it filled out early. I just wanted to do everything I could to get the ball rolling. I spoke with a lady at a private assessment facility and she was so nice and explained to me that honestly, I should wait for the government paid assessment. She explained that at this point even if we paid for a private assessment they were booking a few months out. I was glad we listened to her and waited because a couple weeks later I received a phone call from the government paid assessment facility and they said, "We have an assessment date booked for Harbor. September 6th at 10am." I was THRILLED. I felt like a weight was lifted off my shoulders. This was a step in the right direction.
During the months leading up to September 6th Harbor started seeing a private speech therapist. $130 an hour, but it was worth it. She needed to be in speech therapy. She was down to saying zero words. Time is passing and my daughter needed the support.
The night before Harbor's assessment I couldn't sleep. My mind was racing. I was so nervous. It was a bitter sweet feeling though. This was the day we had been waiting for. I was ready for it, but at the same time I wasn't. I was nervous and anxious about how the assessment would go. I was nervous if Harbor would get too freaked out in their office (doctor/business offices freak her out and can make her spin into a meltdown). I was nervous they wouldn't get to see the real Harbor and everything she is capable of and not be able to do an accurate assessment. Sean and I had SO much running through our minds. This was a big day for Harbor and her future..
to be continued.
