"I leaned on Drew a lot because I would say to him; 'You're the only one who really knows what is going on here, and only you can share this experience with me without judgment," said mother of two Liz Miller when thinking back on her relationship with her husband, Drew, during some of their most challenging parenting moments. Raising a child who is struggling is very difficult and it can put a lot of strain on a marriage. January 26th is National Spouse's Day and we wanted to celebrate it by talking to two Pennsylvania couple's Liz and Drew Miller and Astrid Arroyo and Michael Uzyak about how they have kept their bond strong through some incredibly challenging times. These two couples lived experiences of enduring challenges together and remaining a team as they advocated for their children are not only admirable but are also a great example for parents who are just starting their journey.
"We had been feeling isolated before the pandemic for a variety of reasons. It got to a point where our son's care became large enough and his complexities required a feeding tube and he lost his mobility. It was difficult to find anyone capable of managing his needs even for short periods of time. My family is scattered and we didn’t have a lot of friends who were eager to help. We didn’t have anyone to back us up with him. We felt like we were on an island there," said Michael. This feeling of being isolated from extended family and friends is one that is all too familiar to many parents raising a child who is struggling. "I totally isolated myself I have lost a lot of friends. Many of them I lost because of their views on how we parent. They just don’t get it. I am not going to try and defend myself about what is really going on here. And they think 'Oh it's your parenting skills.' but that's not the case. Liz and I became very close even through rough patches," said Drew.
When talking to both of the couples about their advice for anybody who is just getting started raising a child who is struggling it fell into 4 categories; communication, the importance of being a united front, playing to each other's strengths, and finally showing love and support to your partner.
Communication:
"That’s the main thing. Without communication, you cannot function as a couple. We need to be on the same page to make sure we are doing the right thing. I am always saying me and my husband don't have great communication and that is something we need to continue to work on. I am very emotional and reactive, I have to hold myself back and I feel like I have to for the sake of our son. I would have severed every relationship that I have. I am emotional when we are trying to get what I want for our son and what I think he deserves," said Astrid. Michael agreed with Astrid that this is a part of their relationship that they both want to work on; "I don’t practice what I am preaching enough. I think it’s clearly the most important thing we could do a better job at. We have everything else nailed down but that's the one area where it's hard. It can be scary."
"Communication is really important. Super important. I can’t stress that enough. It is a constant learning curve it is something you have to do every day. Every day in some way. Sometimes you fail and get back on track. It was getting rid of that anger; 'Why is this happening, why do we have to live like this?' Why can’t we have a normal family?' I had to get rid of that anger. Let that anger go. Then you can communicate better, " said Drew. "We talk and talk and talk some more. Sometimes we go on walks and talk about everything under the sun. Serious stuff, funny and lighthearted stuff, we just are constantly communicating with each other about everything going on in our lives," said Liz.
Both couples emphasized the importance of being on the same page very early on about what your child's diagnosis is and what the treatment plan entails. "At first we were on the same page but in different books. Well, actually when something like this happens to your kid it's hard to even find the book, let alone get on the same page, you have no idea what you are doing. But through communication and research you start to figure it out," said Drew.
Being a United Front
Everyone agreed that being a united front both when talking to your children, and when advocating for them is essential. You are a team. " It is so important. Any therapist will tell you that. We would go to dinner and write out our plan of what we were going to say to our kids. We had to set boundaries. We once had to write an eviction notice for our son and we had to take him to court. Drew and I had to have an agreement on everything before we did anything. In our younger years, it was not always easy to be that united front. I wish we had known then what we know now," said Liz." We learned a lot from so many therapists. Each of us needs to remember we can’t be enablers. To kick your child out of the house, what parent does that? It was very hard. No matter how bad the kid is you love them. We needed to make the decision and stick to it," said Drew.
Michael and Astrid are currently advocating for their son with his school because they don't feel like he has gotten the education and services he deserves during the pandemic. "We are having an issue with the school providing what we feel is inadequate education. We started engaging them with the issue last week, we are completely on the same page that they aren’t doing enough and that they are making excuses. I am a little more of a let's solve this by dealing with it on a systemic level, she is more of a let's take it to the streets and throw rocks. But we want the same thing and we are advocating as a team," said Michael.
When asked how important being a united front is Astrid said; "We do everything together. It is very isolating to go into a room and advocate for your son. Going to an IEP meeting, doctor's appointments, my husband goes with us. Somebody there that is agreeing with you that this is what needs to be done. I think that is why we have gotten so far. It's the two of us, not just me. It is scary alone, all these people are educated and supposedly know better than you. He is on the same team as me. I think I have only been to one meeting by myself and having someone there to lean on and back you up is empowering." Astrid went on to say that she knows this is not always possible but thinks it makes a huge difference in the service that your child receives, and she mentioned that with the increase in telehealth services it may be more doable for people now than before. Drew and Liz whole-heartedly agree with the idea of going to everything possible together.
Playing to Eachother's Strengths
"Liz was the leader and she did it, she's the backbone of everything. The paperwork, insurance, I lead on some things but not everything. We had to get charges expunged. We worked to our strengths," said Drew; "I know that she takes charge and gets so much done but never assume that they will do it all. I constantly check-in and ask 'what can I do, what can I take off of your plate?" Liz who has a background as an administrative assistant was comfortable taking on more of a leadership role while keeping things organized, or doing research. "Find each other's strengths and use them," said Liz.
"The approaches are sometimes a little different. I am more reactive and he is more patient. I will do all the research and get an education on the diagnosis and the services. He is the front face and he will do all the talking while I am in the back telling him what to do. He is calmer. I cry and get angry. I always talk about how much I love that, I think our son has gotten so far because we are both advocating for him. It works for us, I am okay with him doing all of the talking and me doing the research, going to conferences and webinars. I will tell him 'Hey this is what needs to be done can you do it.," said Astrid.
Showing Love and Support
In your head, you know that society tells you that you should be carving out time to go on romantic dates to keep your marriage strong. However, as a parent raising a child who is struggling you recognize that oftentimes that is completely not an option for you. It can be hard to find someone to watch your child(ren) and it is also incredibly exhausting and it can be hard to find the energy. While it is difficult the couples do have some ways of staying connected that have worked for them.
"It is very important. I see other parents that use extended family or nurses to go out to dinner. That is something we don’t do. Our alone time is when the kids are in bed and we watch a movie, or my son is at school or in the weekend program then we will go out with friends or on our own," said Astrid. Astrid and Michael also took up hobbies together and got their son an adaptive stroller to go on family running trips.
"Well, we made our parenting support group our date night and would go out after and relax and be able to watch news and trivia and sports and keep it light. It’s just like the oxygen mask. You have to take time for yourself and you as a couple. That was great and we would watch Eagles games together too and it was fun. Sometimes we didn't even want to be in our living room, it was too toxic here. We couldn’t talk here, but in the early years we really couldn’t really go out because of the kids, they were sometimes too much to handle for a babysitter," said Liz. When things were at their most stressful and both of them were utterly exhausted Liz mentioned that sometimes just putting her hand on Drew's hand when watching tv was a sign that they were connected and their relationship was important to her.
Above all try and remember that you and your partner are a team in this."It is pretty easy to view that circumstance as something that is happening to you but you forget that it is happening to your partner too, try and remember that. It is a lifetime journey you are setting out on and it's different than the one you thought you were." said Michael. Drew wanted newly starting parents to give their partners props when they do something well. "It doesn't matter how small, tell them when they did something well and continue to lift each other up."
This is one of the longest articles that we have written on our blog because the lived experiences from all that were interviewed were too valuable not to share, and there is, even more, we couldn't fit. Check back with us next week to see our brand new tip sheet that will feature tangible tips from Liz, Drew, Astrid, and Michael as well as other parents we reached out to about how to continue to support your partner.