Wings for Autism

Wings for Autism

Today this article showed up in my newsfeed. It is a mom thanking JetBlue for the service they provided her son with autism before and during a flight. She liked that she was able to indicate his special needs and make a few specific remarks about those special needs when she booked online. Then when she called just to make sure everything was okay, she was offered assistance and silent boarding when they arrived at the airport. She selected silent boarding and indicated how much this helped her son get settled into the new environment and get his headphones on to cancel out the noise when his fellow travelers started boarding the plane. Additionally, extra care and patience were shown to them throughout the duration of the flight, as the staff were aware of his needs based on what she was able to share when she booked the flight. I thought many of these things were good and important to consider when traveling by plane with a person with special needs. I didn’t know some of these options were available and was excited to share them! This also made me think of a JetBlue program I had heard of awhile back called Wings for Autism. The Wings for Autism program was created to offer a safe environment for families to practice traveling with an autistic child, and be surrounded by others in similar situations. By getting comfortable with the airport and flight experience (without actually leaving the airport!), both parents and their children with special needs could gain the familiarity and confidence needed to fly for real when the...
Service Monkeys

Service Monkeys

Recently, I saw a man with a service monkey at the airport. Is your jaw on the ground? Because mine was, in amazement! I had to look it up right away and what I learned was amazing! Service Monkeys According to monkeyhelpers.org, “The most obvious difference between capuchin monkeys and other service animals is their dexterous hands and amazing fine motor skills. This enables them to perform tasks such as: turning pages scratching itches retrieving dropped objects inserting straws into bottles turning on buttons/switches for remotes, phones, computers, etc. repositioning limbs on a wheelchair Other differences include: their long life span of 30-40 years small size which allows them to cuddle in their human partner’s lap or nook of their neck monkeys have hair, like humans, which helps to alleviates problems with fur-related allergies Monkeys also have a strong sense of hierarchy which provides the motivation to care for and be cared for by their human partner. Helping Hands trainers and placement staff utilize this natural hierarchy to create a mutually beneficial and nurturing relationship between the monkey and the recipient.” Then I found this video showing a service monkey in action and helping this amazing young man. You have to watch this! Other service animals include miniature horses and pigs. And if you’re wondering, most airlines do let them on planes to serve people with disabilities....
Evaluations Hurt – Ouch!

Evaluations Hurt – Ouch!

Ahhh testing. I remember, when Dylan was in the Early Intervention program and she got their qualification testing done to benchmark where she was developmentally and see what benefits she qualified for. I asked her physical therapist what the results were and she hesitated. We had become quite close as she was the one in the NICU sent to evaluate Dylan at only a couple weeks old. We were lucky to continue her services in our home. She ask me “Are you okay with the results?” She was being genuine… testing me, to see how I would be able to handle the fact that my two-year old was still a baby. She explained that it was a test for kids of all abilities even fully functioning ‘typical’ children so there would be a lot of things that just don’t apply. I brushed her concern off. Of course I was going to be okay with it! Of course! I knew what to expect, I know Dylan, I know that she can’t walk or talk, or eat, I love her. It’s fine. I was going to be fine hearing everything she had to say. And I was. Fast forward to this week. This week we finally completed the paper work to get Dylan on the waiting list for the Division of Services for People with Disabilities, DSPD. I was a bit of a slacker, many parents get their kids on the waiting list right away knowing it can take up to 7-9 years to get services (yep, you read that right, it’s a shame really…) but we had hesitated on Dylan because...
What I Tell New Special Needs Parents

What I Tell New Special Needs Parents

A while ago I got an email from someone I had reached out to when her son was born with a rare 7q deletion like Dylan. I hadn’t traded emails with her in a long time and I noticed, attached to the new email, was a trail of old emails that we had sent each other. Normally, when I reach out to a new mom I just tell them what I am inspired to tell them. It’s certainly no form letter and who knows what I have said and shared along the way. I tend to run on and on, which I really had in this instance too, but reading over what I had written to this woman originally I felt like it also needed to be shared. Preserved for those who randomly find this post but that I don’t have the pleasure of trading emails with or reaching out to personally. What I tell new moms: I just wanted to tell you a little bit about my daughter Dylan and invite you to visit my blog www.cutelittlemonkeys.blogspot.com. Dylan had no prenatal diagnosis but she was IUGR so we knew something was going on, turns out a LOT. She was born at almost 31 weeks and her birth set our family into a bit of a tail spin. Information after information we found out Dylan has a mega deletion of chromosome 7q and as a result she has spine issues and her brain is malformed. Her prognosis was quite bleak. You know, those doctors only tell you what’s in their text books, which often works to the families detriment!...
Surgical Masks (A DIY!)

Surgical Masks (A DIY!)

This one is inspired by our very own LionHeart Innovations Founder Tammy! Transplant patients take medicine every day to suppress their immune system, and for good reason! This medicine helps their body to not fight the donor part, in Tammy’s son Landon’s case, it’s his heart. You can read a little about his story here. Kind of scary for a special needs parent to know that their child doesn’t have an immune system, as if sending them out into the world isn’t stressful enough! Any little cold for your child can send Landon straight to a children’s hospital for treatment. That’s scary!  So when the weather starts to cool, flu and cold season hits, Landon wears a medical face mask in all public places. Not only that, but when his family starts to come down with something, they wear a mask to protect him. Even the kids. Landon is our own special needs model! In order to make this as fun as possible, and yea… kind of special… Tammy and Landon’s grandma get together and make washable fabric masks for the whole family. This allows them to use any fun fabric they want for the kids. Landon can have a choice in which mask he wants to wear that day. Tammy said that when Landon started school she talked to the teacher about Landon and him needing to wear a mask. She was very understanding and apparently did such a good job explaining it to the other kids that they all wanted masks too. (Pretty special teacher eh?) They got together this past weekend to make some – This is...