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

Harbor Amelia Part 1

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.

Tongue and Lip Ties

From the moment Cove was born there was something off about his latch. It was very painful (more than the usual), his upper lip was curled under, it was a very shallow latch and he kept coming off of the breast and we would have to latch again. He would latch a little better when I wore a nipple shield, but while nursing it was as if he was chewing instead of sucking. It was very painful! Even when I would think it was a decent latch, he still didn't drain me and I would end up needing to pump and give him a bottle. I tried for about a week, but then realized it just wasn't working (I was getting clogged ducts) and his latch wasn't improving so I started to fully pump.

our sweet boy

When Cove was 3 weeks old we took him to the doctor to get checked for a tongue tie. I had started looking into more information about tongue ties because I came across an article that listed symptoms of a tongue tie and it REALLY sounded like what he had! So I brought him in to get looked at and our doctor said no, he isn't tongue tied. Unfortunately, where I live there aren't many resources for support when it came to breastfeeding. Our local lactation consultant moved away so I would need to travel to make appointments with one in British Columbia.

I kept digging for more information and then came across an article about a lip tie. Again, all of the symptoms listed for a lip tie sounded exactly like what we had been experiencing with Cove! I lifted his lip up and sure enough I could see a lip tie! Now I wasn't 100% because I had never even known about lip ties before but I was pretty damn certain that's what we were dealing with.

Again, I made an appointment with our doctor to get his lip tie looked at but once again I wasn't satisfied with the answer. As my doctor explained it.. in her point of view as his doctor she doesn't see his lip tie as a concern because he is able to eat from a bottle and is gaining weight. BUT from a dentists point of view they might see it as a problem due to their training and concerns. It made sense the way she explained it to me, however I just felt like I couldn't get a straight answer!! It was so frustrating. 

I ended up joining a tongue and lip tie Facebook support group and I was able to reach out and talk with other mom's dealing with the same issue. 

US - https://www.facebook.com/groups/tonguetiebabies/

Canada - https://www.facebook.com/groups/CanadianTongueTieSupport/

I found these support groups very helpful! What I had learned in these groups were that tongue and lip ties are starting to become more well known and more babies are being born with them. It is kind of a controversial subject when it comes to speaking with a doctor about them because many doctors don't have any training on them and it is easy for them to dismiss them. There are lists of preferred providers who are trained on ties and are able to preform revisions on tongue and lip ties. 

You can find your local providers here - https://www.tt-lt-support-network.com

Bottom line. YOU have to do your own research and be the advocate for you baby!! I'll be honest, I still find the whole thing confusing and overwhelming. I have been researching and looking into what to do about Cove's lip tie and went back and forth to whether we needed to see a preferred provider. Since I wasn't nursing I wasn't sure if we still needed to get his lip tie released. We made an appointment with a Dr. Chan in North Vancouver who was listed as a preferred provider. He is a dentist, has further training in ties and with breastfeeding. I had read a lot of good things about him in the support group so I felt good about seeing him and to get some answers.

Vancouver bound

On Monday we flew to Vancouver and I felt very nervous, but at the same time ready to get this appointment over with. Dr. Chan seemed very knowledgeable, took pictures of Cove's lip tie and possible tongue tie and then went into detail to find out information from us about his symptoms. NOW, this is where it started to get confusing to me. Dr. Chan seemed very PRO breastfeeding (which is great) however it seemed he kept going back to the fact that because I am not nursing and Cove is able to get milk from a bottle then he didn't fully see a need to release his lip tie. He explained his point of view, listened to our concerns and then stepped out of the room to let Sean and I discuss and come up with a decision. In that very moment I felt like a lost, confused, unsure, not confident mother. I was hearing what Dr. Chan was saying, BUT because of the fact that Cove wasn't able to nurse I DO see a huge issue. Even when he feeds from a bottle he has a poor latch, pops off, gets extra air, seems to get frustrated while eating, has a huge gap between his front teeth and I don't want to wait and see other issues come in the near future. I have read they can have speech issues and dental issues. So we decided to go through with the procedure. Now I don't want to scare anyone who may be needing to get the procedure done, but it is never fun to hear your baby cry or in pain. Sean said it was probably harder on me than it was on Cove. I had to keep telling myself he won't remember this and why we are doing it.

I have read that MOST lip ties also come with a posterior tongue tie. Again, we have been told he doesn't have a tongue tie, but since he has a lip tie I was still concerned. When Dr. Chan examined Cove's ties I felt as though I couldn't get a straight answer from him! It was kind of frustrating. He kept explaining how everyone is born with some degree of ties, but it depends on the function and symptoms of the ties whether to get the released or not. I get THAT.. but does he have a tongue tie too or not!? He didn't seem concerned about his tongue at all so we only had his lip tie released. 

Sleeping on the plane

Poor baby boy was so tired, uncomfortable and in pain after the procedure

This whole topic gives me a headache to be honest.. One moment I feel like we have done our job with doing the research, seeing a preferred provider, taking his symptoms into consideration and going with what we felt was right, but then I start to worry again. Should I get second opinion for another preferred provider about his tongue?? At this moment in time we just have to focus on Cove healing and continue doing his stretches. (There are lip stretches that need to be done before we feeds to make sure the lip tie doesn't grow back. It isn't very easy or fun to do!)

I wanted to write this blog post just to let other mom's out there know they're not alone, to help give some direction in resources and to also just spread more awareness about ties. I wish so badly I would have known about Cove's lip tie when he was a newborn! I always wonder if I would have been able to nurse him if we would have had his lip tie revised sooner. Hopefully this will all be done and behind us soon and please feel free to reach out to me if you'd like any more information or have any questions! 

xo Ashley