Hi guys, Miggy here! So many of you have said that you’d LOVE to hear from former Spotlight participants to see where they are now and I’m happy to report that today’s spotlight–with more to come–is just that! It’s the beginning of the Special Needs Spotlight Then and Now series and I can’t wait to share these with you! Like you, there are so many people I’ve featured over the years and have wondered what they’ve been up to, how things have changed be it ability or mindset. Today we’re welcoming back Leah and her son Eli who has Cri du Chat Syndrome. You can read their first spotlight here.
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Miggy: Welcome back Leah! I’m so excited to have you again and for you to share an update with all of us on your son Eli who has Cri Du Chat syndrome. First, let’s start with a brief overview of your son–what is Cri du Chat syndrome and how does it specifically manifest in Eli?
Leah: Eli has Cri du Chat Syndrome and this manifests in different ways in our awesome kid. Firstly, he has the “cat-like cry” and high-pitched voice that comes with the diamond-shaped larynx that is a characteristic of this rare syndrome. Eli also has low muscle tone, resulting in a delay in his sitting, crawling and walking. He had weekly physiotherapy and this was a game changer for him – he worked his little tail feather off and, with the help of orthotics, is now starting to run!
Eli is considered “non-verbal” but we would rather call him “uniquely verbal” because he uses so many methods to communicate! He started with signs and sounds and pointing and has now started working really hard at repeating words and sometimes even short phrases. The amazing thing is that we know he understands so very much and when given the time and opportunity he can and will accurately communicate his needs and wants.
One of the most difficult things is his lack of sleep. Sleep issues are common in Cri du Chat but, because of the rarity of this condition and lack of medical experts of Cri du Chat Syndrome, not much research has gone into how to help our kids get more sleep. We have tried many things over the years but haven’t found a solution yet to get Eli a full night’s sleep. We will never stop trying to figure it out and we have gotten the best advice from other families of kids with Cri du Chat.
Miggy: It’s been a number of years since we first did a spotlight on Eli, in the years since what has changed the most about him during this period of time? Any unexpected highs or lows you’d like to share?
Leah: So many things have changed over the last few years!! Eli was 2 and a half at the time of the last spotlight and will turn 5 in April! How does that even happen?
The biggest thing for Eli is that he has become a big brother this past year!! He loves on his little “Bebe LoLo” (Baby Arlo) and seeing them together makes my heart just melt. The boys along with their big sister Maeve make for a noisy and fun household!!
Over the past couple of years, Eli has been working so hard in his therapy and with the help of his Supra Malleolar Orthotics (SMOs), he is now able to stand and walk independently! We knew from the start that due to the low muscle tone, mobility is usually an issue for people with Cri du Chat Syndrome – some people use wheelchairs, some use walkers, some use Orthotics and some use nothing at all. We followed Eli’s lead and supported with Physiotherapy and hours and hours of homework!! He is now trying to run after his sister and even tries to get our old dog in on the fun.
Eli is also becoming much more verbal and has really started to take his time to use certain sounds or respond to a question or request. Through Speech Therapy, we realized that we were speaking FOR him at times or assuming an answer when we asked him a question. We learned to ask a question or request an action and then WAIT. We have sometimes waited for 20 seconds (seems like FOREVER) before he answered but gosh darn it! What a great feeling when he responded in his way. It could be with an eyebrow raise, a sign or a word, but he knew that we were waiting to hear what he had to say. That simple gesture opened up something within him and now he knows that we expect him to communicate and participate, not just sit and passively listen! So profound for us as a family!
[readmore title= “Click through to read how Leah supports her son Eli now.”]
I haven’t watched them yet but I absolutely agree with you.
WATCH!
I was obsessed with this case as a kid!!! I actually haven’t watched the docuseries yet (that’s what a weekend is for) but I knew not much would be ruined for me, spoiler wise. I remember thinking then, good for her…and as a kid (I was 15, a sophomore in HS when the story broke) I thought Lorena was in shock and the throwing his penis in a field made total sense to me. My mom never discouraged us from staying informed about most all topics. One of the MANY things I love about her!
Strange story about when I saw John Bobbitt. I live in Las Vegas and a few years after the case, I’m a little older (in college 18 or 19 1996-1997 ish) and I just saw him standing in line for security. For some reason him just being in line so close like a normal person, when to me he was NOT a normal person, was bizarre. He was such a joke of a person to me in every sense, that it was weird to me at the time to see him. Like, don’t be in public dude Laughable to call him a man and funny to me too that he has to walk with the mark of getting what he deserved in a moment, not justice…eye for an eye moment in my mind. I was traveling with my mom and I started telling her, that John Wayne Bobbit was in line and she was kind of ignoring me (I’m barely quiet as it is) and so I got louder and more insistent that she notice this guy. People around me started noticing him and my mom died and was so mad at me for the rest of our travels because she felt like people were judging that a kid knew who he was. I kept saying everyone knows who he is mom, they just maybe didn’t spot him (that may have been my fault). In my mom’s version of this story she says I did a chopping motion with my hand, when trying to get her attention.
She is an interpreter for the deaf and so she says I did the sign for “stop” while saying his name to her and so in her mind she’s saying that was the same as pointing to my croch. hahaha Anyway, my mom said she actually questioned herself for a moment of like this whole story is about sex, and a penis, and porn, and violence…should my kid be able to spot this man in a crowd in an airport? So, now as an adult I think my mom wasn’t that mad at me just reacted because of some internal worries NO ONE looked at my mom, or said anything, and let’s remember I was an adult anyway. So, nothing to “judge”
So now,I’m super excited to get more of this fascinating story that I once upon a time couldn’t get enough of.
OK I laughed out loud at your comment when you described your mom’s version of the story. I don’t know if it’s just me, but I feel like there is this weird divide between us feeling like society was a lot more buttoned up when we were kids, but at the same time I felt less shielded from things like this. I watched A LOT of made-for-tv-serial killer movies in the late 80’s/early 90’s and those things are still seared into my brain. Like you said, I don’t think much of this documentary will surprise you, but it’s still such a great watch–especially to finally see Lorena given an accurate and fair shake in the media. She really is an incredibly strong and amazing woman.
I haven’t watched this yet, but just yesterday I read an article about this docuseries, and it included an interview with Lorena. I live in the northern VA area and remember when this was wallpapered on news and how sensational and salacious the coverage was. Very different from how it would be covered today (or at least how I hope it would be covered).
Your comment about Howard Stern was interesting, that same quote was included in the article and I had the same thoughts as you. How is he so celebrated now when he was so vile back then? And I say this as someone who generally enjoys his satellite radio program, I find his interviews interesting, and he seems so much more enlightened now, which he’ll say is after years of therapy. I applaud that change, but I haven’t heard him apologize for past behavior and offer an acknowledgement of how hurtful it was to many.
Anyway, I’m so appreciative of the #metoo movement and how these things are seen in a different light now and how seriously it’s taken. Hopeful for my daughter not having to experience harassment at work, harassment on the street, and of course never in her own home. And hopeful that my son and his friends are getting an education on how to respectful men.
I know Howard Sten was famous for being a “shock jock” but that doesn’t erase years and years of his toxic effects on our culture and like you I think he should issue a public apology to Lorena and probably many other women. And yes I’m appreciative of the #metoo movement, I think the fact that we still have a sitting president with 23 women accusing him of sexual assault (among a litany of other things) tells me we’ve still got a long way to go. I am hopeful, but cautiously so.
Just finished watching the series. While I sympathise and support Lorena, I am struck by the societal dysfunction of the whole situation. John’s father abused his mom and left the family. They lived in poverty with their mother and were victimized by neighbors. They were sexually assaulted by an uncle. I can’t excuse his behaviour but I can understand it. 26 years later, the poor are still victimized by their neighbors and society, and the misogynistic legal and political environment still belittle and blame the women. Women were burning bras in the late 1960’s when I was in high school, now we have saggy girls, while we are still underpaid, under-hired, abused and unbelieved. Plus look what kind of people are in the white house, on the supreme court, and in the house and the Senate, still disrespecting women and refusing to unite to make the country better. SMH.