Special Needs Spotlight–Then and Now || Eli

   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!Miggy: What has changed the most for you personally about your identity as a special needs parent? For example, have your general views on disability evolved, does your care-taking look different than it used to, and/or do you feel more or less personally balanced than you used to?

Leah: I feel like the first couple of years, I was creating a framework for how I wanted this Special Needs Parenting to be, defining who I was within something I felt was so new for me. I am an advocate. I will do whatever needs to be done to give my kid everything I can. I will speak in a way that shows my pride for him and my family. While this definitely helped me create a positive outlook and a supportive role for my son, I feel like I am more settled into it now. It just IS now. Just one part of who I am.

Eli starts school in the fall and I’ve been forced to really understand that I am not the end all and be all for my kid. He will have so many teachers and helpers and people who love him and those he will love. I am his Mama who will fight for him always, but he is his own person and I am mine. That has been a really new understanding and one that I am still getting my head around, but one that has really made me feel a sense of freedom for my little guy. Will I still be in touch with his teachers and therapists? Oh, hells yes, but I am so happy for him to have some new adventures on the horizon.

Miggy: I’m curious to know if you have noticed a shift in the relationships or dynamics in your family over the years as well that might be directly or indirectly affected by your special needs situation? For example, sibling resentment, marital challenges or perhaps the ties are stronger than ever?

Leah: We were made aware early on of how much time and effort can go into therapies, etc. for a child with special needs and worked very hard at making sure Eli’s older sister Maeve was made to feel very special in her own way. That is not to say that we have done everything perfectly, we definitely haven’t, but having a supportive family around us has helped us have individual time which means so much. We haven’t seen sibling resentment as such, but Maeve has made comments or asked questions that have made my heart ache for her a little. When Eli was starting Kinderstart (sessions kids here have before they start school to allow them to be familiarized with the classroom and teachers), Maeve quietly told me during our bedtime routine that she was afraid kids were going to be mean to Eli and make fun of “his language.” I shared with her that I was afraid of that too but that just meant that someone didn’t understand how our differences make us amazing and that we could use it to teach them about Cri du Chat Syndrome and that Eli was an awesome little boy who would have so many friends who loved him so much. I filled that chat up with some killer points but couldn’t help feel the depth of the fear we all hold for our guy.

She has also asked if Eli will have Cri du Chat forever because “it’s hard to understand him sometimes and I just want him to play with me.” While these comments or questions can be hard to hear, it allows us to have important conversations with Maeve and to support her as she figures out the world around her. I truly believe this role is one that has given her much, much more than we will realize and I really do look forward to seeing how it develops in Eli’s little brother as he gets bigger.

Our entire family dynamic has been broadened with conversations around disability and special needs. Eli is loved beyond measure and is supported by so many people in so many ways. My husband Chris and I have definitely had our days of frustration, managing on little sleep and full schedules, but our communication has always stayed in a productive place. That is one of the only pieces of advice I would give to parents/couples who are new on this journey. TALK IT ALL OUT. The good, the bad and the ugly. If you aren’t in that place yet, get help to get there because things can go south so very easily. We found that the fear or negative feelings went in waves and most times, when one of us was down, the other would be up so we were able to authentically support each other. The random time that we were both down we would just kind of huddle together, still talk it out and know that it would pass. We have also really started to understand the importance of our own individual time and are constantly working on how to support each other in that – whether it’s one of us taking the kids while the other works out or taking turns with the therapies and homework and music lessons so it’s evenly distributed, we have become more open to what needs to happen daily to feel more wholly supported. And just to be real – we also argue and misunderstand each other and need to do more housework and lighten up sometimes and just freaking RELAX – but we always seem to come back around.

Miggy: I still it important to find humor in our daily lives and LOVE hearing all the funny anecdotes related to disability–anything recent funny stories you’d like to share?

Leah: Well, the one that always makes me laugh is before Eli was consistently using words, I was retelling a story to my family of another mom whose adult son has Cri du Chat and he jokingly called her an “a##hole” and she had made a video of it and he was really hilarious my sisters and I laughed and then from across the room comes a little repeating parrot…“a##hole” – okay, kinda Eli’s first word. Big Ooops!!!

Miggy: It’s really hard to see the lessons we’re being taught when we’re in the thick of it–often we need time to give us perspective we don’t initially have. So what do you feel like you’ve learned in the past few years that perhaps you didn’t see at first?

Leah: When Eli was first diagnosed, I jumped head in as Advocate Mama. While I still advocate for him on a regular basis, I have become really aware of the intricacies of what that means. The big one that has hit me hard is that I am not his voice. I can not and should not make all his decisions, even within the fact that he has cognitive delays. It is so obvious to me now but it definitely took listening to disability activists over time to realize that he must be the writer of his own adventure. While he is a kid, of course, he will still be guided by us and we will make decisions on his behalf but I strongly feel that moments of independence need to be built into his day now so that he is used to making decisions for himself at a young age. Right now it is “Milk or water? The blue shirt of the one with the dinosaur on it?” but these are building blocks to get us to a place where he may make decisions about his living arrangements, what program he may want to do after he finishes High School or who he wants to spend time with. I want Eli to be able to identify what brings him joy in life and also what he may need to stay away from. He can’t do that if I am all over him and analysing every move. Up until fairly recently I really did think my role was to “own” his life and make his decisions for him but I have found a lovely (and kind of scary) feeling of excitement in seeing that this isn’t the case.Miggy: Lastly, is there anything else you’d like to add about identity, family or your views in general as they relate to disability?

Leah: Similarly to what I was saying above about Eli owning his own adventure, I have come to realize that people with disabilities of any and all kinds do not need others to speak for them or to tell them what they may need. We need to listen to those who are navigating within this ableist society and work to support what is important to them. That is the role of an ally, a true advocate.

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Leah! Thank you. This was so amazing. I wanted to give you a standing ovation when I got to your final paragraph. I love seeing the how you guys have grown and changed over the years. First, that’s so exciting to see that Eli is running and communicating. I love that you learned through his speech therapy not to speak for him, but to wait and listen. Such a pronounced lesson when sometimes you really have to wait, but wow… wouldn’t we all be better off if we paused for longer periods of time to hear what others had to say? Along with that I couldn’t agree more that we–the special needs parents–need to realize that we are not our children’s voices. When they are young and can’t speak for themselves? Yes. And if they really can’t communicate or speak for themselves, then of course yes. But for most of us it behooves us to listen to our children and like you said, other disabled adults who have walked a similar path and then let go and let our kids write their own stories. Thanks again Leah! It was great to catch up with you and please give Eli a high-five from me.

Yay! I love hearing these updates. As always if you or someone you know would like to participate in the spotlight please email me at thislittlemiggy at gmail dot com. And if you’ve already been featured but would like to do a Then and Now spotlight update let me know! I’d love to hear from you as well.

Have a great weekend!
XO,
Miggy