• Home
  • About...
    • About Lane of Inquiry
    • About Deafblindness
    • Let Us Help
    • Accessibility
  • News & Events
  • Research
  • Resources
  • Blog
  • Donate
  • Contact
LANE OF INQUIRY
  • Home
  • About...
    • About Lane of Inquiry
    • About Deafblindness
    • Let Us Help
    • Accessibility
  • News & Events
  • Research
  • Resources
  • Blog
  • Donate
  • Contact

blog

Celebrating the good in our lives: USH Awareness Day 2023

9/14/2023

0 Comments

 
Lane, Conner and Dalton hugging and smiling in front of a lake.
Every Usher Syndrome Awareness Day is a time I reflect back on our lives since we found out Conner, and then Dalton, were diagnosed with USH 1b. Here are my thoughts for 2023.

The third Saturday of September is always Usher Syndrome Awareness Day. In 2023, that’s September 16. It’s a day I always reflect on our journey with our 2 sons diagnosed with USH. 

Nineteen years ago we found out that our oldest son, Conner, had Usher syndrome type 1b. I remember that day like it was yesterday. I went solo to Conner’s eye visit because it was supposed to be routine - Todd didn’t need to take the time to go with me. We were there to the bottom of why Conner would cry when it was dark. We were absolutely unprepared to hear “your son will someday go blind and there isn’t much we can do”. I don’t recall driving home at all - I was in complete shock.

The good that came out of that day: We needed to know more. We needed to find a cure to help our son. A month later we started our non profit, Hear See Hope Foundation with an USH cure as our mission. Nearly 20 years later there still is no cure, but the collective “we” have learned so much and are closer than ever. I’m thankful we took that terrifying day and turned it into something positive.

What else has been good? We’ve met many amazing people. I’ve learned so much about myself. I’ve switched careers to one that I love and helps others. And we know these boys were born to us for a reason. 

Usher syndrome, of course, has impacted our sons’ lives profoundly. But here to, we can also find the good:

Conner is 24. He’s quick witted and smart. It’s fun to get into philosophical conversations with him about all kinds of subjects. I always learn something new. He currently works as a research Program Assistant at Helen Keller National Center and just moved back to Washington state so he’s close to us again. He was diagnosed at 6 months of age with profound hearing loss, received his first cochlear implant at 13 months of age and his second at age 9. He has experienced balance problems since birth and that probably bothers him the most about his condition. It wasn’t until he was 5 that we learned he had Usher syndrome. Right now he has about 5% of his peripheral vision and he uses a cane. He’s an avid reader thanks to his Kindle app with magnification and inverted colors. Being my first born, Conner has taught me so much as a mom. I’m blessed to have such an amazing son. ​
Picture
Dalton is 15 and, like his older brother, has Usher syndrome type 1b. Dalton is very thoughtful and caring - he’s the first one to notice when something is bothering me and to tell me it’s going to be ok. He has such a love for animals. You’ll always find him with a cat or dog nearby. We learned of Dalton’s diagnosis at birth. He was the youngest child at Seattle Children’s Hospital to receive bilateral cochlear implants at 6 months old. Although he has some blind spots in his vision, his vision loss progression is much slower than Conner’s. In year 3 of lessons, Dalton is still passionate about learning ASL.

​He is committed to spreading awareness about USH. In April, he went with me and a large group to Washington DC to advocate and tell his story to legislators. He also submitted a Proclamation request to Governor Inslee (signed on August 15), proclaiming September 16, 2023 as Usher Syndrome Awareness Day in Washington State. The proclamation was received in time for us to share it with all the attendees who were at our ranch for our USH Social. I am so proud. Great job Dalton! Thank you Governor Inslee!
It’s important to focus on the good, but equally acknowledge and process the challenges and struggles. I started this emotional year with a breakdown of sorts. The kids were struggling and I had taken on too much. I had to find time for self-care, which I did. Only then could I see all the good in my life, not just the obstacles. Which is what I am celebrating today.

This wasn’t the life journey that I thought I would be on but life rarely goes according to plan. Before I had kids, I was a very private person (I still am) but I knew I had to advocate for my boys. I found my voice and realized by sharing my story I could help others. In June, I started writing my personal story into a book (it’s halfway done). I’ve allowed myself to be vulnerable and share my raw honest feelings about this journey. This has been very cathartic for me. 

More good. In August we held our first USH event at our ranch. The ranch has been a major step in our journey. Two years ago I saw this property in Carnation and I instantly knew I needed to have it. Todd thought I was crazy but supported me to make it happen. For those who know us, understand that when we decide we want something we dive right in. In this case, we had no idea what we were doing. We had no animals. And, we certainly knew nothing about how to care for animals. But, I saw a vision that thankfully Todd shared. Leading up to the event, Todd worked countless hours getting our place where it is today, ready for guests. 

Being on our ranch around the animals, enjoying the outdoors, has been very therapeutic for me. It’s helped me recover from the years of trauma since the kids' diagnosis. When I saw the impact on our family that this place has had, I knew my life goal was to share this with others. This is how the USH event dream was born. I wanted to bring individuals who are deafblind and their families here in hopes that this place could give them as much joy as it has given us. Last month we realized my dream and those three days were life changing. Not only were all 4 of our boys here, but we were surrounded by our broader Usher syndrome family. Seeing the smiles on people's faces made me so happy. Yes, it was a lot of work but it was so fulfilling. It's hard to describe, but I felt completely at peace. ​
Images from the PNW USH Social at Infinity Ranch 8-23
Lastly, I couldn’t do any of this without my village, my USH/DB community. When I have bad days and I don’t know what to do (and I still have many of these!) I look to my USH/DB family for support. You all have never let me down.

It’s funny how 2023 started on such a low for me, but it’s turned around and there is so much to be thankful for. I’m so proud of our boys and who they have become. I’m proud to be their mom. 

So, on Saturday I’ll be spending the day hugging and laughing with our boys and appreciating the broader Usher/Deafblind community that surrounds us with love and support. Thank you to all of you that read my blogs, help with my research, and most importantly pick up the phone when I need you. 

​
0 Comments

Twenty Five Years and Starting Anew

8/16/2023

2 Comments

 
Lane and Todd McKittrick, smiling, wearing sunglasses and holding a glass of wine on an outdoor restaurant patio
We rarely talk about it, but raising a child with disabilities takes a toll on a marriage. As Todd and I celebrate our 25th wedding anniversary, at this turning point in our lives, I'm reflecting back and speaking out about what I've learned.

Read More
2 Comments

To honor all the siblings who grew up in the shadows: Cole’s Story

6/14/2023

0 Comments

 
McKittrick Family, smiling, at Cole's 2023 graduation from Gonzaga University
A child with a sibling who is disabled plays a special role in the growth of a family. Our son Cole is that person in ours. Here is his story.

Read More
0 Comments

Living with USH: the Anxiety of a Routine Appointment is Real and OK

5/10/2023

0 Comments

 
Dalton McKittrick smiling, wearing sunglasses on the Mall in Washington DC with the Capitol building in the background.
When your child has Usher syndrome, it's normal to be anxious awaiting annual vision and hearing screening results. As the mom of two with USH, even after 20 years, the flood of emotion tied to these annual visits remains, and that is OK.


Read More
0 Comments

When should I tell my child about deafblindness? My Story.

3/8/2023

0 Comments

 
Lane holding Conner at age 2, seated on a deck
Finding the right time to tell your child they are deafblind is a very personal decision. Lane shares her story and offers advice and strategies for parents facing this difficult conversation.

Read More
0 Comments

Introduction & Summary of Journal Article

11/8/2022

1 Comment

 
Picture


The idea for this research study came about because of my experience as a mom to two amazing boys who are deafblind. This article is based upon my dissertation. I included the following vignette in my dissertation and I wanted to re-share it to give some context behind “my why”. Still when I read this, it makes me emotional. I know I am not alone and that many other families feel emotional when thinking back to any struggles in advocating for their child’s needs. ​


Read More
1 Comment

Feeling All the Feels. The USH Conference & the Importance of Community

7/13/2022

0 Comments

 
Three images from USH2022 featuring Dalton, Conner & Liam - all with big smiles.
Conner, Dalton & I spent a fabulous weekend with our USH family. It unleashed a whole swarm of feelings and revelations. 

Read More
0 Comments

Reflecting on being a mom: the pandemic, transitions and self awareness

5/13/2022

5 Comments

 
4 images of Lane with each of her sons
Sometimes, as moms, it gets to be too much. Especially if you are a mom of children with disabilities. This blog is for all the moms, to let you know you are not alone, it's ok to break down and you will find your strength again.

Read More
5 Comments

Help students reach new heights through self-advocacy

2/18/2022

0 Comments

 
McKittrick family on top of a mountain, smiling

As I struggled on my journey to help my children who are deafblind get the education they deserved, I finally realized that teaching them to advocate for themselves not only resulted in success at school, but in life as well.

Read More
0 Comments

Research Synthesis: The Benefits of Teaching Self-Determination Skills to Very Young Students with Sensory Loss

1/28/2022

0 Comments

 
Graphic of research study
I am the mom of two boys who are deafblind resulting from Usher syndrome, our oldest being 22. I did not learn about the Expanded Core Curriculum (ECC) until our oldest son was in high school. Until that point, our son’s Individualized Education Program (IEP) team was focused solely on supporting his academic progress. He also had an orientation and mobility specialist who worked with him on cane skills and a teacher of students with visual impairments who consulted on an as-needed basis. Once I started researching the ECC, I saw that self-determination is one of its nine core components and became interested in learning more. ​

Read More
0 Comments
<<Previous

    Author

    Lanya (Lane) McKittrick is the Chair of the Board of the Usher Syndrome Coalition, founder of the Hear See Hope Foundation, and deafblind education researcher and founder of Lane of Inquiry. Lane received her PhD in Special Education at the University of Northern Colorado. Her research, advocacy and family support work are rooted in her personal experience as a mom to four sons, including two who have Usher Syndrome, the leading genetic cause of deafblindness.



    Archives

    September 2023
    August 2023
    June 2023
    May 2023
    March 2023
    November 2022
    July 2022
    May 2022
    February 2022
    January 2022
    December 2021
    August 2021
    June 2021
    May 2021
    April 2021
    March 2021
    January 2021
    October 2020
    September 2020
    May 2020
    March 2020
    December 2019
    October 2019
    January 2019

    Categories

    All
    Advocacy
    College Prep
    Communication
    COVID 19
    COVID-19
    Deafblind Education
    Deafblindness
    Dyslexia
    Families
    IEP
    Leadership
    Learning Disabilities
    Literacy
    Marriage
    Parenting
    Remote Learning
    Research
    School Choice
    Self Care
    Self-care
    Self Determination
    Self-Determination
    Special Education
    Stories
    Struggling Readers
    Usher Syndrome

    RSS Feed

Three triangles in circular shape. One yellow with magnifying glass icon, one green with ear icon, one red with eye icon

Can We help? Please Contact Us!
​
Can You help Support us? Donate Now!


About

About Lane of Inquiry
About Deafblindness
​Let Us Help
Accessibility

RESEARCH

Resources

BLOG

Contact

  • Home
  • About...
    • About Lane of Inquiry
    • About Deafblindness
    • Let Us Help
    • Accessibility
  • News & Events
  • Research
  • Resources
  • Blog
  • Donate
  • Contact