Actress Denise Richards doesn’t see herself as a caregiver, but as a mom learning to slow down and celebrate her daughter’s independence.
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Can you describe Eloise’s genetic condition?
First of all, I’d like to say that I don’t think of myself as a caregiver. I just think of myself as Eloise’s mom. Whatever challenges there are with any of my daughters, it’s just what I do as a mom.
She has low muscle tone, so it was hard for her to even sit up on her own. She didn’t start crawling until she was 1½, and she didn’t walk until she was 2½ years old. It took a long time to get answers. I think she was about 4½ or 5 years old when she was finally diagnosed.
We saw a neurologist, and then we saw
We saw a neurologist, and then we saw a doctor who did several genetic tests on her. Finally, she was diagnosed with a chromosomal disorder. She has a deletion in chromosome 8, and the genes affected by that deletion cause her to have a lot of delays.
She’s considered nonverbal. She can say a handful of words. There are times when she’s as aware as a 15-year-old and times when she’s like a toddler.
Has it changed as she’s gotten older?
Yes, it’s changed. When she was younger, she wasn’t out of diapers completely until she was 5 years old. If I didn’t hold her hand, she didn’t have the wherewithal to know that a car could be coming, so I would have to carry her at an age when most parents wouldn’t be carrying their child. That was the physical part.
I want her to feel independent, so I
I want her to feel independent, so I pick and choose when to step in. I know she’s a teenager, but I am extra protective, and there are times when I do have to help her with certain things.
Are there any re things that have helped you along the way that you wish other people knew about?
When she was diagnosed, the doctor handed me some papers that were Googled, and I was so confused. The doctor said, “We don’t know much about her diagnosis, so we don’t really have a road map for you to follow.”
I have the rey lucky to have that,
I have the rey lucky to have that, because I know many families don’t. A lot of these things, though, insurance doesn’t cover
I started by finding a speech therapist and someone to help work on her cognitive skills. She’ll plug her ears a lot if she’s in a place where it’s too loud, so there are certain places we can’t go. We just got her an iPad that we program to help talk for her. We did try sign language, but she can’t maneuver her fingers and hand for a lot of the signs, so it didn’t work for her. It’s been challenging.
I did try a school that had an aide who worked with her. That did not work out well. The best option we found for her is a one-on-one situation, and that’s been working really well. She will light up, and that’s been a huge lesson for me and my older girls, to see that she’s such a happy girl.
Have there been any professional caregivers who have
Have there been any professional caregivers who have been really helpful in Eloise’s journey so far?
I started Eloise in speech therapy really young. I remember being so upset when the speech therapist said, “I don’t know if she will ever talk.” I thought, “What do you mean? She’s got vocal cords. I hear her make noise.” It was hard for me as a mom to really understand that.
Eloise can say probably about 10 words, if that. A lot of them are whispered, and they’re sometimes not fully said, but we know she’s saying those words. She can’t say a sentence. But she loves school. She loves to learn.
For me, the best thing was finding someone
For me, the best thing was finding someone who nurtured her strengths and encouraged her. When we started speech therapy, once I did get the diagnosis, it almost shut her down a bit. So, I had to take a break from it, because I didn’t want to shut her down verbally altogether. I think she felt pressure. It’s about trying to navigate my child and do what’s best for her.
What do you want people to know, whether they’re going through the same thing or on the outside looking in?
I think the biggest thing, especially early on before I was public about it, is that sometimes it’s easy to place judgment. You have no idea what it takes to even get out of the house sometimes.
There was a day she brushed her hair
There was a day she brushed her hair herself, and if it looked like a hairstyle none of us would wear, I didn’t care. She was just so excited to go on a trip. It’s hard, because obviously I know the hair looked a little disheveled, but she loved it, and that’s all that matters. My kid’s so happy, and I let her feel good and independent.
You mentioned that your family has experienced Alzheimer’s disease. Is that correct?
My dad’s dad passed away from it, and my dad’s brother had frontal lobe dementia.
There’s a test you can do to see if you have the gene. I said to [my doctor], “OK, so let’s say I find out that I do. What can I do? I’ll just be so worried afterward.” He said there are things you can be aware of, and he went through a list. I was so scared, actually, but I took the test, and I don’t have the gene. Now I’m so relieved that I did it.
Would you encourage other people to take the test?
I was terrified to take the test,
I was terrified to take the test, but I am so glad that I did. I would encourage people to do it, because there are so many changes being made with all the research. I want my sister to take the test.
Is there anything else you would like to say to other parents?
For me, as her parent, it’s all we know. The key is finding and focusing on the positives. Eloise has given us such a gift. I’ve said this before: She has truly made us stop and smell the roses. Eloise notices her surroundings. She’s very observant. She isn’t distracted on her phone; she’s very present and appreciative of the moment.
