Our teammate, Amy Cook, joins Lynne on a very special episode. Amy’s daughter, Natalie, was diagnosed with Down Syndrome at the age of four days old. Discover the challenges and the triumphs of a family that is learning about this chromosomal condition that affects 1 in every 700 babies in the United States. Listen today on “Money, I’m Home!”
00:06 Lynne Jarman-Johnson: Money, I’m home. Welcome in, I’m Lynne Jarman-Johnson with Consumers Credit Union. From finance to fitness, we have it all and today, we have a very special guest with us, Amy Cook. Amy, you are a colleague of mine at Consumers Credit Union, tell us a little bit about what you do.
00:22 Amy Cook: I am a loan officer at our Corner at Drake office. I’ve been with Consumers about seven years. I started at Gull Road and I just… I love working with our members.
00:31 LJJ: And you started in member service?
00:33 AC: Yes.
00:33 LJJ: Yes, so you are a… I would call it just a great example of a person who is juggling it all. You’re a mom, you are rising in your career because you started front line with individuals and then now you are really helping people grab their dreams as a loan officer. Tell us a little bit about your journey so far.
00:58 AC: It is a juggling act. I started as a teller, I really work with loans and helping our members and at home I have two kids, a husband, two cats, and my two kids are two and four so it’s a lot to handle.
01:16 LJJ: How exciting that you have had your career and here with Consumers, you’re our family and you are raising a family, exciting times.
01:26 AC: It is exciting.
01:27 LJJ: So, tell us a little bit about your family and your kids and you’ve been very public and eye-opening for me on Facebook and I’m going to let you explain that a little bit too, as we go.
01:44 AC: Alright so my son is four, like I said, he turns five next month. He started school this year.
01:51 LJJ: I saw his little drawing of his name.
01:53 AC: It was a huge adjustment for him, but he was so excited to go in. Every day, he’s so excited to show us everything that he’s done. We also… My daughter is two, she turned two in August. She is a lot like me, she’s very fun, she’s very sassy. She was also born with an extra chromosome, so she has Down Syndrome. She was diagnosed at four days old so a post-birth diagnosis, it was obviously a surprise no matter how you find out, but she has just shown us what it means.
02:29 LJJ: When I read your posts, you have some very honest, transparent posts about being a mom but then also really about being a mom of a child, you didn’t expect to have Down Syndrome but now what that truly has meant to your family.
02:51 AC: Yeah, I guess you never expect it but we did have screenings and we were told it was all negative so it was a surprise, but I think fear is the hardest part. Getting over the fear and seeing that she really is just like any other kid. Seeing her walk and roll and crawl and eat and throw tantrums [chuckle] like every other kid.
03:15 LJJ: Well, it must be fun to really see the differences between any child. So, when I raised my kids, every one of them had their own personality. Every one of them did different milestones at different times.
03:30 AC: Yes.
03:30 LJJ: There’s no difference.
03:31 AC: No, there’s really not and like you said, I am pretty raw in how it feels and some of the questions that I get or sometimes if I’m having a hard day, I just let it out because really I think there’s a lack of knowledge and when people see me going through it, it’s not as scary to others.
03:50 LJJ: Well, they can actually talk and ask questions about the things that they might be wondering, right?
03:55 AC: Yes.
03:56 LJJ: As you go through each day, I know people who… When I had an issue going on in my life, that was a health issue with my mom, they didn’t dare talk to me about it and it wasn’t because they didn’t want to, they just didn’t know what to say.
04:16 AC: A lot of people don’t know how to bring it up or they’re afraid that if they’re trying to be helpful, they’re… Comes off wrong, which sometimes it does but I don’t take it personally.
04:26 LJJ: It opens the door.
04:27 AC: Yes.
04:28 LJJ: So, talk to me a little bit about once the diagnosis comes in, what are the steps that professionals do to get you on a journey of your own knowledge?
04:39 AC: So, we worked really closely with a social worker at the hospital and she actually helped our entire family. So, my parents, my husband’s parents, my brother, his sister, she brought us all in to ask any questions that we had. We work with early intervention, we live in Kalamazoo so it’s through KRESA and they provide therapies for her for the first three years and it’s completely funded, we don’t pay anything out of pocket for that.
05:08 AC: There are times that we definitely have done some outside therapies that insurance covers or… Just to give a little bit more of an edge but our doctors have been really great. It is the most common genetic abnormality but that doesn’t mean that you get a lot of doctors that have seen a lot of patients with it or their own patients so they’ve done a lot of research and they really support us, and if I’m worried about something they really take it to heart.
05:36 LJJ: Right away?
05:37 AC: Yes.
05:38 LJJ: Wow. So, you bring Natalie home, you have a young son too, at that juncture, he’s a toddler.
05:48 AC: Yeah, he was two.
05:49 LJJ: Right.
05:50 AC: Yeah.
05:51 LJJ: How does the family dynamics work as they’re growing? I’ve seen some beautiful pictures of the two of them together and the love that is there. Is there a point where a child thinks to ask questions or is it just “Nope, this is my sister.”
06:09 AC: Logan doesn’t know any different right now,, we’ve never talked about it. We just want him to feel like “This is my sister. There’s nothing wrong with her.” That’s one of our biggest concerns is, we don’t ever want somebody to feel like there’s something wrong with Natalie because there isn’t.
06:25 LJJ: Natalie is Natalie.
06:26 AC: Yes, she is herself. I will never apologize for how she is but Logan doesn’t know any different. Eventually, we will probably explain to him what it means but he loves her regardless. They roughhouse, they fight, they get mad at each other, they love each other. It’s just like any siblings, I would imagine.
06:45 LJJ: [chuckle] Absolutely, so as Natalie grows, there must be milestones. What is it that the educators talk to you about in the sense of what to look for, next steps?
07:01 AC: So, one of the things that comes with Down Syndrome, in each individual with Down Syndrome, they occur differently. So, she may have something that another person with Down Syndrome does not. One that’s really common is hypotonia, so low muscle tone. So, reaching those gross motor and fine motor can be a little bit more difficult. She rolled super early, I don’t think my son ever rolled, I just don’t remember that as a milestone for him but she just rolled at really early but then walking took longer, my son took longer to walk, I took longer to walk but she was even longer than us, she was about two when she started walking.
07:40 AC: Now, we can’t get her to stop but… So those gross motor, those fine motor, speech is another big one because that has a lot to do with the muscles in the mouth, so speech is the one that we’re focusing the most heavily on right now. She does sign, she does have words, she knows how to say no and don’t.
08:00 LJJ: [chuckle] That’s typical.
08:00 AC: Yeah.
08:01 LJJ: Two-year old. [chuckle]
08:02 AC: Cat is her other favorite one. But it’s learning that communication and really getting her ready for more speech and spoken words.
08:11 LJJ: So, does schooling start even earlier?
08:14 AC: It does.
08:14 LJJ: Wow!
08:14 AC: So, she will start in school next year at three years old, it’s an…
08:19 LJJ: But what a great opportunity to have the tools available.
08:22 AC: I want to give her every opportunity I can and with them providing that for us, I have no complaints there. I’ll fight for her if I need to, but we’re really given a ton of tools.
08:32 LJJ: So, talk to me about that support that is around you. It sounds to me like your family is extremely supportive as a husband and wife going through something together. Must be a joy to you.
08:50 AC: Yes, we have a great relationship. My husband really picks up the slack wherever I can’t. As a working mom, it’s hard to balance all of that and there are days where I feel like I have a lot to do and I just… I need to work today and my son is sick, or my daughter is sick, or we have an appointment and he’s able to make it work with his schedule if I can’t.
09:15 LJJ: So, when you look at support groups, was that something that was immediately brought to the attention in the Kalamazoo area in the West Michigan market?
09:26 AC: So quite honestly, right at the beginning when we received our diagnosis, I wasn’t ready for anything. I just needed to work through it myself and I think it was similar for my husband. We needed to work through it together but after that, I did find a Facebook group and it’s Kalamazoo parents of children with Down Syndrome and other disabilities. I also found the Down Syndrome Association of West Michigan which is based out of Grand Rapids, so I received a lot of support through that.
09:54 AC: We have monthly mom’s dinners, sometimes it’s moms and dads. There are people that I can reach out to with questions of “Is this normal? How would you handle this?” Or there are people coming in that I can give them some insight too so that support was huge for me.
10:13 LJJ: I think when you talk about giving people insight, is your Facebook public?
10:19 AC: It’s not public. I’ve always kept it private, but I tend to tag people sometimes that allows more people to see. I do have a blog that is public.
10:30 LJJ: Oh, what’s the blog called?
10:32 AC: I think it’s Amy Up and Down. It’s about my motherhood journey, all the ups and the downs. The down is capitalized because of Down Syndrome but it really gets into everything and it’s…
10:46 LJJ: It’s raw.
10:46 AC: Very real.
10:48 LJJ: Well, I can tell you that in your honesty and transparency, what that has done is allow people to really be able to talk to someone that maybe they didn’t know before but had the questions that you went through and I think it’s important that you say “Look, it took me some time to… I have to understand it. I personally have to go through there.” What’s been happening in the sense of, you mentioned that sometimes people will say things and they don’t mean it to come out a certain way, what is it that happens sometimes where you just tilt your head and just go “Oh, really.” [chuckle]
11:29 AC: At the very beginning, it was like if we told people we had our child or they know we had our child and then, we tell them about the Down Syndrome thing, “I’m Sorry.” I’m not sorry. She’s amazing, she’s healthy, she’s happy, I’m happy. I’m not pregnant anymore, that was great but I’m not sorry, I’m happy that she is healthy.
11:54 LJJ: Isn’t that an interesting thing?
11:56 AC: Yeah and I’m not offended by it, but I don’t want to hurt somebody’s feelings when I explain why.
12:02 LJJ: But that’s the whole point. If you’re listening and someone tells you something that you’re not expecting, maybe it’s just time to listen.
12:14 AC: I think another one that we get a lot that’s… It’s not offensive at all to me, it’s just hard to explain is, I get questions of like “Well, where is she on the spectrum?” There’s not a spectrum of Down Syndrome. It’s the same as everybody else. Yes, there are some that function higher, some that have lower functioning but that’s just like us as individuals.
12:36 LJJ: Exactly. How tall am I, right? Where are you in the realm of every day of what you do every day?
12:46 AC: But I think the curiosity is what I really enjoy. I like that some of those people are not afraid, so I don’t want to scare people from saying these things that’s just… Sometimes the way that we explain it, we don’t want you to be offended if we’re explaining “Well, there’s not a spectrum.” I don’t want somebody to feel dumb, I’m glad that they asked.
13:06 LJJ: Absolutely. So, as you’re moving forward, what are the fears that you face just as a mom, not in general with Natalie, in general?
13:18 AC: In general, my fear is the same. Just I want to make sure I’m raising good people, good functioning members of society that are good to each other, to everybody else. I think another fear that I have is really how other people treat my children. I want my children to be kind of and I don’t want hate or somebody being really mean to my children to change who they are.
13:50 LJJ: Well, it starts right where you are starting it at home. You’re doing a wonderful job, that’s for sure. Future, as you go forward, do you just sometimes go “Oh my gosh, how are we getting it all done?”
14:05 AC: Yes, there are days that I don’t know how we got through that one day and I think well, they’re young, they need a lot right now so it’s going to get better but then I look at my friends that have teenagers and I’m like “I don’t know how I’m going to deal with that.” [chuckle]
14:20 LJJ: [chuckle] Blink, it’s coming your way fast. [chuckle] Amy Cook is joining us here. I’ll tell you what, thank you so much, thanks for your honesty. To learn more, to listen more, read more about Amy’s journey, all you need to do is find the blog, Up and Down, My Motherhood Journey. Amy Cook, thank you so much.
14:42 LJJ: Money, I’m home, from finance to fitness, it’s all about you and your wellness. Thank you for joining us today, I’m Lynne Jarman-Johnson. Would love to thank Jake Esselink, our producer. You guys have a great week.