Posts Tagged ‘deaf plus’

LaShawna Sims: Deaf with Autism

December 5, 2018

I have heard that oftentimes the first deaf or hard of hearing person some people meet is their own deaf or hard of hearing child. While for us that wasn’t the case, we had a similar experience, but with a different diagnosis. We have two boys who are both severe to profoundly deaf and bilateral cochlear implant users. Our youngest, also has Autism.

We knew one person with Autism. All we knew of Autism was what we saw in that one individual. I remember telling myself things like; no, our youngest doesn’t have Autism. He doesn’t act the same way or do the same things that person does. I think it’s just that we don’t socialize him enough since his big brother started school. His progress, or lack thereof, in speech is fine. We were told that not all children with cochlear implants progress at the same speed. The professionals advised us to not compare his progress in speech with his older brother’s progress.


A common question asked in our home is, “Is it the Autism, the hearing loss or just him being a kid?”. Our son was diagnosed as “Moderate” and “High-Functioning” on the Autism Spectrum. He is also non-verbal but uses some ASL and the Picture Exchange Communication System (PECS) to communicate with us. Over the years his receptive language skills have blossomed. Most days he wears his CIs with no issues. Other days, he knocks them off as if they are causing discomfort. It is often hard to determine whether or not he is having a sensory moment because of the Autism, being a “typical” child who is having a moment of defiance, or if there is something wrong with his CIs.

I like to say there is a lot of troubleshooting that goes on with our son. Some days he is happy to put his CIs on, while others days it can be a bit of a tug of war. I have a hard time somedays making him put his CIs on because in some ways I feel like I am not being mindful of his Autism diagnosis and what effects the “silence to instant sound” may have on him. Because his expressive language is still progressing, it can be a challenge to know exactly what is going on with him. He can let us know in sign or with PECS that he is hurt, sad, calm, or silly and wiggly. But when it comes to expressing exactly WHY he is feeling those ways, we aren’t always sure.

In the past, Logan has never really gotten a good “map” for his CIs and we think that is due to his Autism diagnosis. Getting him to reliably respond to any sounds he is hearing has been a work in progress. Before he was diagnosed, I dreaded going to the audiologist because it was a literal WWE match trying to hold him down just to run and impedance test. I can remember making sure that I wore clothes that would allow me to wrestle with him and not look completely disheveled after the appointment. Leaving those appointments, I would feel so defeated. I’d feel like I was a terrible parent for forcing him to go through the appointment. Then on the flip side, I knew that I wanted him to have as much good access to sound as possible because that’s what he needed if we wanted him to eventually use spoken language. For a number of years, all of his “maps” were manually made and set very conservatively.

Once we got the Autism diagnosis, things changed for the better. His behaviors all began to make sense. We started ABA therapy for him. His therapists have been quite accommodating in respecting our wishes of incorporating ASL in his therapy as a way of communication. Almost all of his therapists knew not one sign in ASL. Now, many of them have been inspired to learn more ASL and even use it with some of their other non-verbal clients. We’ve even had much better success at the audiologist! I can happily say that I no longer have to wear my “wrestling” attire to an appointment. With the help of his ABA therapists, we have worked on “mock audiology appointments” which have proven to be successful for Logan. He has gotten the best “maps” he’s ever had in his initial years of having cochlear implants.

While things are progressively getting better, we still have our struggles. We are learning together as a family. It’s not easy to pick apart which diagnosis is causing whatever action, feeling or emotion he may be experiencing. All we can do is take it day by day and one step at a time. In all of those hours and steps, we revel in the fact that he is uniquely him and we love every little thing about him. It makes us stronger as individuals and stronger as a family. Even though we have had some hard days, it’s always nice to look back at those struggles and celebrate how far Logan has come. It’s a great reminder that despite our current struggle, we will overcome it together as a family. For that, we are blessed and grateful for this unique journey.

LaShawna Sims, Bilingual Southern Nevada Regional Guide

Nevada Hands & Voices

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The Hands & Voices Network:  It takes a Van to get to Destiny

September 22, 2015

photo 1 (13)

Having just flown back from our Annual H&V Leadership Conference, the buzz is in the air….on Facebook, email exchanges, twitter, Instagram, and texts….

“It was SO good to connect.”

“Thank you for helping me with what I needed for a strong healthy chapter”

“Thank you for supporting me in a situation I have with my own child”

It’s just so wonderful to see the connecting, the exchanging of support, the “Wisdom Among Us”.  We get such little face time together, that when we are together we talk a lot about feeling like we are back together as a family.  We share our unique and yet common experiences of raising a child who is Deaf/Hard of Hearing, and we CONNECT!  I personally walk away from the conference every year filled up and ready to make sure parent-to-parent support is available to all, and to tackle the challenges of improving the lives of our children in the health, education, and other systems that serve us.

The ‘magic’ or our family in some ways has elements we can define and prepare for, but also just happens when we are together.  The logistics of bringing a conference together, however, is not magic – it’s hard work, TO DO lists, endless planning of details, and dealing with onsite happenings you just can’t predict.  We learn from these experiences and also grow from them.  I want to  give a shout out to Molly Martzke, and  Jeannene Evenstad, along with our full H&V staff that made the logistics parts of this conference come together.

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But it’s not just AT the conference where we get this vibe.  In fact, I just wanted to share a few moments that happened AFTER the conference, and I mean IMMEDIATELY after the conference when everyone was tired, looking towards home, and back to the ‘inboxes’ we so willingly abandoned for a few short days.

At our conference this year, we had the privilege of welcoming some international guests to our ‘family’ for the conference from Russia, China, and Kenya.  As we closed out our time, people from among us stepped up to ensure that our guests got where they needed to go, created even more opportunity to enjoy their visit here in the U.S. and to ensure that the network of not just a few, but of many, continued the networking.

Stephanie, Jackie, Lisa

So… thank you Stephanie Olson and Lisa Crawford for opening your home after the conference, spending more time with our Kenya partner, Jackie.  Jacki Oduor is giving to us the gift of herself, energy, and commitment to families in Kenya.  We are so grateful to be connected with her.

Photo:  Stephanie, Jackie, Lisa

To Candace, who not only helped arrange a visit from two special guest professionals from China, but went on to Colorado and spent the next day showing elements of the U.S.  educational system in Colorado, and other activities to help broaden the guests perspectives.  To our professional partner, Christine Yoshinaga Itano who helped arrange this as well.

chinese visitors

The China group visiting a Colorado preschool after flying from the conference in Texas to Colorado.

                                                                     

And to Molly, who is the Leader for our Russian/U.S. Partnership Project, driving our guests in a rather large, 15 passenger van that tested the limits at times of wearing the hat of ‘driver’  amongst her other duties.

huge van

You try parking this huge van perfectly every time.

 

 

 

I wanted to mention these rather ‘logistical’ elements of the ‘network’ that helps us, in the midst of limitations of our capacity, the amazing number of people who step up and abandon their title for just getting done what needs to get done.

Networking together.

Networking together.

I am so proud to be a part of this organization.  Not just for the stars on our map on our website that shows our growth, but that in any given moment, the number of people that are willing to step up and ‘just get it done’ is astounding to me. Thank you all, for making this 12th Annual Conference the best ever, and for keeping the network going even when we are not face to face.

Finally, as the Chinese visitors were boarding a plane after the conference to the next step of their journey, they turned to Candace and said, about their being here to experience Hands & Voices, “This is Destiny”.

Yes, it is.

 

Janet DesGeorges, Executive Director, Hands & Voices Headquarters

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