Harbor Amelia Part 2

On our way to Harbor's assessment we kept positive vibes and didn't want our nerves to get to us so Harbor wouldn't feel it. We played some of Harbor's favorite songs during our drive and Harbor kicked her legs with joy and looked out the window. When we arrived my heart started racing. While walking into the building Sean and I held Harbor's hands, counted to 3 and swung her into the air as we walked. (We wanted to keep her mind off the fact that we were walking into this business building and her not get freaked out.) It was working! 

Once we walked in the Psychiatrist greated us and lead us to a room that was filled with toys. We started to show Harbor some toys to get her interested in playing. The room had a one way viewing window with a little room on the other side where Sean went to sit in and watched the assessment.  The Psychiatrist explained she would like just one of us in the room with Harbor for less distraction. I sat in a chair along the side of the room and only was involved in the assessment if Harbor came to me to interact. The assessment consisted of different evaluations and the Psychiatrist took notes and filled out her forms as she interacted with Harbor. Harbor did great! She wasn't nervous at all. She played very well and listened to the instructions. It was very interesting to see the different activities the doctor wanted Harbor to do. From putting coins into a piggy bank, throwing balls, blowing bubbles, having a tea party, pointing out objects in books, listening to two, three step commands and playing with play-doh. The assessment with Harbor was about an hour and a half long. While watching Harbor interact with the doctor I felt so relieved that she was being herself, not nervous, or freak out and spin into a meltdown. I was just really nervous they wouldn't be able to get a good reading of Harbor.

Then Sean and I went into the Psychiatrist's office for an interview while a staff member stayed in the assessment room and played with Harbor. Our interview was almost an hour long. We started from the very beginning talking about my pregnancy with Harbor, my delivery, any complications after birth, when we started to notice red flags and felt concerned, the progress Harbor has made in the last few months and just about every little detail of Harbor's likes, dislikes and behavior. The Psychiatrist took notes on her laptop as Sean and I talked and would ask us more detailed questions.

At the end of our interview she said she would like about 30 minutes to review all of her notes and then will meet with us to discuss the results.

We walked to a near by coffee shop, grabbed a coffee and Harbor a treat. We both felt satisfied with the assessment and were so proud of Harbor and how well she did! I told Sean that I felt relieved it was over, but now felt nervous to go hear the results. I felt nervous like I was going to go hear the results for a big test! I deep down in my gut knew what we were going to be told, but then I would find myself thinking about how well she did during the assessment, how well she interacted with the doctor and how well she listened to instructions. It was like a back and forth game in my head (and has been since Harbor was 18 months old) that maybe she does show signs of autism.. but gosh she is so smart and GETS it. She is just a busy toddler! The ping pong mind game just needed to end.

We went back into the assessment room so Harbor could play while we talked with the Psychiatrist about her results. She began reading off all of the things Harbor shows "typical" scoring for and then listed all of the things that she was "below average". Honestly I don't remember everything she said. I was too nervous. But she said a sentence like, "Harbor does fall on the Autism spectrum." And my heart stopped. I remember in that moment just having SO much rushing through my mind. 

Okay.

We have an answer.

It's going to be okay.

Harbor will be okay.

We can now get her the help she needs.

I didn't tear up. Sean and I knew deep down this is what we were going to be told. I would have been MORE shocked at this point if the Psychiatrist would have told me Harbor was NOT on the spectrum. But deep down that's what I wanted to hear. No parent wants to hear there is something "wrong" with your child. Or have them be given a title.

The doctor then started handing us a lot of paperwork and forms. A LOT. She started to explain our next step, how we will receive a detailed assessment evaluation summary in the mail in a couple of weeks, how to register for Autism Funding, where to find out which therapy providers were available in our area and lots of information to read about autism.

OVERWHELMING. That's what it was.

It's like this new gate opened and we have to hit the ground running. And that's exactly what I did. I wasn't waiting a minute to get everything started for Harbor. I felt like so much time had already been wasted. I started researching, looking up providers, filling out forms, setting up an appointment for registering her for the Autism Funding that BC provides for families (which is HUGE and such a blessing).

Within 2 weeks we had Harbor's funding applied for and in process, weekly speech therapy appointments scheduled, Harbor's first Occupational Therapy appointment scheduled, a meeting set up to talk with a Behavior Consultant and Behavior Interventionists and I discovered a lady that lived in our city who was a huge advocate for families living with autism. She sends out emails with information about autism and local autism programs in the community.

After our first appointment with Harbor's Behavior Consultant and Behavior Interventionists I cried. For the first time ever I felt relieved. I felt like Harbor now had this amazing team behind her. I felt like Sean and I didn't have to figure it all out on our own. I didn't have to sit on Google for hours. I had actual people to talk to and ask questions to who KNEW and understood my child. I can't even explain what that feels like. Things are happening.

We now have a plan for our babydoll. We know what we are focusing on and what she needs for support. I'm not going to lie, the unknown still kills me. We just have to give her the best support possible to help her succeed in life.

They say once you've met one person with autism, you've met one person with autism.

Everyone is unique. Everyone shows different signs. 

There are many different symptoms for autism:

Very little or no eye contact                    
May not respond to their name being called

Toe walking/awkward movements        
Head banging, hand flapping, rocking

Picky eating                                          
Odd behaviors/repetitive behaviors

Lining up objects or toys                        
Interacting with the same object or toy over and over again

Speech delay                                          
Pressure seeking or avoiding 

Lack of interest in others                        
High energy- goes from one thing to another

Delays in gross and fine motor skills    
Sleeping issues

Over/under response to sensory input    
Inappropriate responses to unexpected change in routine

That's just to name a few signs of autism.

https://www.autismspeaks.org/what-are-symptoms-autism

For Harbor her autistic characteristics were/are:

Lack of eye contact              

Speech delay/regression 

Picky eater                            

Stimming- humming. Harbor has always hummed while she eats.

Under response to sensory input- could fall and scrape her knees and show no reaction. Very high pain tolerance.

Movement seeking- the faster, higher, more movement the better. Her body seeks movement.

Tip toe walking

Sometimes responds when her name is being called

Some odd movements with her hands

Some meltdowns due to change in routine

Chewing- Sensory seeking of chewing on something. You may notice Harbor often has a necklace on (Chewlery) which is jewelry made to chew on.

We now have the help and resources to help Harbor with these behaviors. Our schedules are very busy between Sean's work shifts, my work shifts and Harbor's schedule.

Mon, Wed, Fri - Daycare 

Harbor has a BI (Behavior Interventionist) that assists her for a few hours at daycare to help her with her goals. From sitting at the table with friends during lunch to interacting with her friends and sharing toys.

Tues + Thurs- Activity 

Harbor was in swimming lessons, but we are now going to enrol her into another activity to keep her busy and having fun! She's a busy girl and needs movement.

Tuesdays- Speech Therapy 

Working on speech (obviously) but also finding what works for Harbor to communicate with us as she is non-verbal. We are starting to use PECS (Picture Exchange Communication System) so she can tell us what she wants/is trying to tell us using pictures.

Wednesday- Occupational Therapy 

Working on her picky eating and ways to get her comfortable with trying new foods as well as sitting still at the table to eat. We also work on Harbor's sensory issues (humming, chewing, seeking movement and interaction with others)

We are all learning as we go, that's for sure. I learn something new every therapy appointment. After some appointments I do find myself feeling overwhelmed with all the information and what we are supposed to focus on for the week, but it feels great to have Harbor on the path she needs to be on.

One fellow autistic mom I follow on Instagram wrote a sentence that I really loved and hit me hard..

"We make them succeed."

It's so true. I will do everything in my power to help Harbor succeed. I will research for more answers and resources. Being in denial will only hurt her and hold her back from the help she needs. It's hard to accept and still scary to me, but I have to be strong for my daughter. It's our job as a parent. We will give her the therapy she needs. We will push her out of her comfort zone to reach her goals. And we will support her with love and strength through it all.

She will succeed.

If you see signs of autism or any red flags from your child my biggest advice to you would be, don't wait. Early intervention is best. If you (or maybe others) have questioned your child being on the spectrum have them be assessed. There is only GOOD that will come from being assessed. So maybe your child doesn't end up being diagnosed with ASD.. you can still find other answers to the questionable symptoms that brought you in for the assessment. But, if they do end up being diagnosed with autism or any other diagnosis then you can now be given the resources and support your child needs to succeed.

xo Ashley