Guest Blogger: Meet Mason!

 

Another guest post: Meet Mason! He is a feisty first grader who reads Braille and large print. Mason's mom April shares their story with us today. 

Tell us a little bit about your family and your child:

Mason was born full term and healthy. We didn't know there was an issue with his eyes until we were sent to a pediatric ophthalmologist when he was 6 days old. At that appointment, our lives changed. What we dreamed our life would be, how we saw our family, and how "normal" we thought we were all changed.

We were told he was "blind" but would maybe see light, shadows, and large objects. They said there were no options for surgery, glasses or transplants. We were devastated; the rug ripped from underneath us. How do we go on? What do we do? Slowly, we started to live, we grew, and we loved.

We LOVED Mason, regardless of his differences. We started to learn about his impairment and what we could do to help him learn and grow. We took him to the best doctors we could find. He DID have surgery, he DOES wear glasses and he IS great.

He is in 1st grade and reads large print and Braille. Due to eye fatigue, he is reading Braille better than print. He loves to learn and he loves life.....HIS life just the way it is. He doesn't know anything different and is a happy boy.

Name your child's five favorite things:

• Music
• Playing with an ipad
• Wii bowling
• Visiting family
• Meatloaf!

Any new milestones you want to brag about? (Big or small, they all count.)

He is reading Braille faster than some of his classmates can read print! He is more willing to try new activities! (Due to his VI, his hearing is sensitive and he doesn't like loud noises. He is often afraid of unsuspecting noises and that can keep him from trying new things.) He just tried REAL bowling recently and loved it.

Your favorite local resource(s):

• Our Teacher of the Visually Impaired ROCKS and is a HUGE resource to us.
• Our school is also supportive and accommodating to Mason's needs.

Your favorite web resource(s):

• Wonderbaby.org
• Sensory technologies from sensorysun.com
• Facebook: coloboma moms

What has therapy (Early Intervention, school, or private) been like for your child?

Early intervention was great and so helpful in teaching us how to help Mason. They had the toys and equipment to stimulate him and help him learn. They taught us that enabling him with not help him but encouragement will. Encouragement to not let his visual impairment define or limit him.

What do you wish people understood about your child?

We wish that people would see visual impairment as just that. There are people that speak loudly to him as though he is hard of hearing. They speak slowly as if he can't understand. He can not SEE. That doesn't mean he can not DO. Do not feel sorry for him for he does great things already. He has taught us many lessons on life, love and not taking anything for granted.

Can you think of one thing that really improved your life that you want to share with other parents? (For example: I wish we would have started melatonin much earlier! Tom never slept before, and with Melatonin, he does.)

I wish we would've started Orientation and Mobility sooner so he could navigate independently with a cane. I wish we would've pushed the doctors more when we didn't feel as though they were comfortable with what they were seeing. (We finally flew out of state to find out that Mason was misdiagnosed with retinal detachments which were actually large cataracts-hence the surgery) We pushed for the best but not soon enough.

What advice would you give to new parents of blind children?

Advocate, advocate, advocate! Find the people that have faith in you and in your child. Whether it's a different doctor, surgeon, teacher or therapist. If they are discouraging or negative, find a new one!

Surround yourself with the people that want to see your child succeed. Being blind or visually impaired does not equal the inability to be successful. Love your child and guide them to believe in themselves and they WILL succeed.

Anything else you want to say?

I'd just like to give all new parents a virtual hug. Raising a child is difficult and raising a child with special needs has even more challenges. I just try to get through one day at a time during stressful times. I usually have the most frustration and fear when I try to tackle Mason's life and how I can help him all at once.

It takes a lot of courage to fight for what's best for your child. But I feel the fight is worth the reward.... a successful, loving, happy child. Mason is not the boy with the visual impairment. He is a happy, successful, courageous, and loving boy that happens to have a visual impairment.

Thanks April! That was a powerful and inspiring guest post. Parent advocacy is the best skill you can have as the parent of a child with special needs.

If you'd like to follow Mason and read more about his story, you can find Mason and his family on: www.caringbridge.org/visit/masonarchibald

The invitation to guest post is still open. Send me an email or leave a comment if you would like to share your story. The good news is that I already have several guest posts lined up!