Hello and welcome to the if we knew then podcast I’m Stephen Saux and I’m Lori Saux and today’s episode focuses on a sometimes challenging aspect of parenting a child with really any disability the emotional part of dealing with those yearly assessments, IEP’s and evaluations that always seem to happen right around our child’s birthday celebration. We’ll discuss how we managed the stresses early on and maybe how we would have done some things differently a good way to facilitate this is with an if we knew then statement.
If we knew then we would say don’t worry because honestly what I’ve always told you is worrying doesn’t change anything yeah and and it’s so hard not to worry but sometimes I’ll just you know we do a lot of meditation and had to keep in the moment and to just remember what is actually real in this moment so worrying doesn’t change anything and that may sound stupid because sometimes it sounds stupid to say it but worrying really doesn’t change.
A lot of things can feel stupid sometimes because you might like my past experiences put me in a place where I might have put him in a box I remember when Liam was born we look at each other and and while I’m sorry when we found out Liam had Down Syndrome, we looked each other one of course is we said was we’re not gonna give up on this kid we are not gonna give up on him and one of the early things that he was not able to do was he was not able to latch on and he couldn’t nurse because when Liam was born he was two pounds fifteen ounces. His head his entire head was smaller than the, don’t tell him what we bought him a Groot doll. A Groot stuffed animal. When we bought it we both looked at it and said this is how small he was when he was born. He was about that size.
Well we said we were going to give up on him and I remember just one of the things we would do is you would pump and every two hours. I want to say this to moms. I was still pumping every three hours every day for a year. I gave it one year. That was my goal, one year. So, Liam bumped his head and he was crying and Lori hugged him and he just naturally latched on and it was such a surprise and I flash back to almost a year before where I said we were gonna give up on him and we did give up on him. I said well he’s a year old but still make this bond happened. He showed us he’s gonna get it in his time. To be patient and don’t give up.
But don’t judge yourself because he’s still going to get even give up he’s not gonna give up. If the foundation is there if the opportunity is there. I think that was the idea I had in my head I mean you know when he was one it kind of dawned on me. I think just now for the first time ever, I get with that story was. We thought about it so many times over the last nine years and truth is we may have given up but he didn’t. So take that into not being so hard on yourself. You are human and you’re on this journey and you’re trying to figure it out and you’re always doing your best. So don’t be so hard on yourself. Don’t be so hard because I think that any time whether it be like an IEP or even last year on his birthday where he doesn’t ask for much and it was just right after Christmas and we took him to Disneyland. But we didn’t buy a lot of things. I remember when he opened the few things that we got him, he was so excited. I was like why didn’t I buy things to open and I was so hard on myself. I felt so sad. Was it because he doesn’t want things? I second guess myself and my motives and why I did that. I remember I felt so sad and I judge myself so hard. As too, had I become what I fight against? I would say from that: don’t give up! Remember not to be so hard on yourself. Let it be a journey, let it be. I’m going to quote The Beatles, “let it be”. And in the heart of choosing your focus in these annual things that IP’s and and other tests and annual doctors and all of those things that you have to experience, we get to choose what we focus on and we do have to do some hard things and we do have to experience things that maybe we wouldn’t have fathom ten years ago. We have to be tougher but we are tougher than we know. And smarter and stronger and more compassionate and patient. And I’m talking about with the school system. I’m not talking about with my son. I’m talking about with that journey. We have to be compassionate. We have to be patient and we have to be peaceful warriors. We have to educate ourselves and we have to be stronger than we want to be sometimes. I don’t always want to be so damn strong. And then you get to choose what you focus on. Because on the flip side, just having that child, my son or my daughter, the celebration of them. Let that be your focus. It wasn’t always. It wasn’t really until the last couple years that his birthday was a celebration. I mean there was the milestones. He didn’t have the same milestones. “He’s three he’s so small”.
And even birthday gifts that we bought the kid. Every gift had to have a purpose. That would be great for pincer grasping. That is good for cognitive development.
The kid couldn’t just have toy. Not just just to play it with and enjoy. And when we received gifts they were always kind of the low bar. You know getting a gift made for an infant when he was four. And that breaks your heart but Know that people are doing their best. You’re gonna have to do those yearly things you have to do the IEPs and you have to do the doctor’s visits. You have to do the forms that you fill out you have to do, depending on where you live, you have to do your regional center. You have to do all of these things. Let them have their place, let them have their time. Squeak out a little bit of time to do it and then let you focus be the celebration. And you would say:
Trust that it is going to be okay.
And he’s a blast. I mean he’s awesome and she is awesome and they’re great together. We’re very lucky that they’re both very happy and we’re happy. Liam definitely knows he has friends, he likes himself. He looks himself in the mirror and is proud of himself. The fears that I have… and I’ve discussed my thoughts. I have more concerns for my typical child, Sophia because life is pretty tough. And there are no guarantees and that she’ll always be happy with herself. I hope she is.
There’s no guarantee Liam will always be happy with himself.
I don’t worry about him as much. He just has a confidence in himself and he’s proud of himself.
But he has all the emotions.
I mean he has emotions but he’s the one that will, when one of us is sad, he puts his arm on your shoulder and says smile. He comforts. He’ll feel sad too and he’s very empathetic.
Sophia’s does it too. She lifts you up too.
But we’re talking about if we knew then. We’d say trust. Your are the parents and you know what you’re doing and you’re doing your best. And as Andy Garcia said in Mamma Mia II: “My best it is all that I have.” You’re doing your best and that’s all you can do. They’re gonna know that they’re loved. That’s the most important thing. Whatever your foundation that you’re giving them, you’re giving them that foundation. And you’re opening doors for them and you’re their voice. Don’t get mad at the way things are. I think it’s that we change the way things are. Let that anger fuel your actions to make a change and a difference. Be a voice. Let your voice be heard and then we make a difference. Small small baby steps along the way.
So I would say do your annual things and then go back to celebrating.
Do what you have to do and just enjoy the celebration. Make sure that you eat that cake, you blood those candles and you make that wish and you sing that song. However you celebrate you celebrate. Don’t get caught up in what it should be.
That can happen I think, even with a typical child. I feel like as a parent with a child with Down Syndrome it’s even magnified.
Why is he eating? Why isn’t he lifted that up? Even more than I did with Sophia. I think it’s because society compares and they tell you.
Every little element of Liam’s natural development as a child was under a microscope. It was all written down and then analyzed and put on in a chart. I remember the first day kindergarten he hugged a child and then another child came and hugged and we talked about it in the next meeting.
It’s under a microscope. But put it in perspective. And you know when you’re at the meeting and they tell you all those things about how your child hugged… In the nicest most polite way you can. You are their voice. You have a voice and if that seems unfair you can say all children hug.
It’s true there are a lot of different ways to do this and you have to trust yourself. You have to make the decision and then do it. When Liam came home from the NICU, I was almost adamant, no I wasn’t adamant, I just wrestled with myself. If we are inviting someone over to come meet our new baby, who has spent two and a half months in the NICU. He’s finally home and we’re gonna invite some people over and I wrestled with myself. I think I told you, I said that I need to call these people and tell them Liam has Down Syndrome. I mean I need to tell them and prepare them.
And this is probably one of my good moments.
This was great. It was a great lesson.
I said if you’re going to say that, then you need to also put a note that Liam has brown eyes because it’s just as important. They’ll get here and they’ll see that he has down syndrome or they won’t. Like the lady in Pier One who just thought he was a mixed baby and she said I love mixed babies.
That was the most beautiful because it was just me and him. A really sweet cashier looked at Liam and said oh my goodness I just love mixed babies and I think she thought he was ethnic.
I mean obviously she thought he was ethnic. It was just a nice little smile she was nice about it.
I think it’s very similar to this weekend, Sophia had a birthday party she went to and I had to go back to drop something off and you and Liam came. I hadn’t mentioned Down Syndrome. I think maybe Sophia has to her friends. He was there just like you. I mean they may have had a conversation before but we didn’t have to justify or do any of that. Just like I didn’t tell them Sophia is afraid of dogs so if you walk to the park she might get a little scared, which that also happened. I didn’t have to explained and I think and sometime not explaining you’re gonna get people that are a bit surprised and taken aback. But I’m okay with that. It goes by fast, that little moment. It is good for them and good for all of us. Good because I don’t have to explain my child and I shouldn’t have to. I think that’s part of the frustration. I feel like, if I knew then I wouldn’t spend so much time explaining my child to people. I didn’t always, I think. But I think maybe you more so than I.
I think I wrestled with it more.
Because I was adopted and so I had a different reality growing up. But I think that’s why I was like Liam doesn’t need explanation. Why do I have to explain? You know? Unless you’re going to babysit him. I’m not gonna make it feel like he’s less than by explaining his existence. I think that’s it honestly. At the root of everything, at the foundation of the problem. The conversation about Down Syndrome is justifying the existence of a child on a certain level. That has been the fight. That’s the fight for his education. Justifying that he should be educated. Why does just because he has Down Syndrome, that he doesn’t deserve an education or that he should not get a diploma or that the expectation is so low and the bar is so low. And the stereotypes.
Now it’s just really nice. Like it doesn’t come up in the conversation.
I talk about my son and sometimes I’ll talk about a specific. People will be like “oh you sign with your your son?” and I just say “yes”. They can ask why and I can say the truth. Because his expressive language comes slower than his cognitive and receptive so we help him to express himself. So that people can understand what he’s saying. But they use it as a deficit instead of saying oh your child knows two languages. I’m sorry that your teachers don’t know two languages and that they can’t sign with him. And also that we don’t know his language and understand how he’s saying and speaking.
I just thought you needed to know that because, like we said there’s a lot of different ways to do it. Maybe you feel more comfortable doing that but there’s an option of not doing it you don’t have to. Hey you might want to make a book for kids.
We were asked to make a book. Can you make a book explaining what I should say to my child or child?
We decided not to discuss with any parents or students in kindergarten and we decided not to have a book or a sit down with anybody to explain that Liam has Down Syndrome. He’s gonna be in your class. That is actually a popular thing.
It’s a very popular thing.
Now I will say, if I knew then… I would say don’t get so mad at the book. I was mad at the book because people said can you please make a book? “I saw somebody make a book explaining down syndrome and your child. What their limits are.” I just got indignant.
The book basically would say this is what Down Syndrome is. These are the things that I can’t do and these are some things…
It was kindergarten and I got mad and my answer was… First of all you can Google Down Syndrome and there’s all your facts. If you want the definition.
This is when you were asked by a parent.
I was asked by a parent, “how do I explain your child to my child?” That’s what someone said to me. Again, I can say that, that parent is doing their best. I make it my responsibility. I could have not gotten defensive because. I mean it comes from ignorance.
You know what I felt? I don’t have to tell you about Liam because he’s part of our community. I don’t know how to tell your child about Liam. I don’t know how to tell you how to parent. I don’t know how to tell you how to explain to your child when you walk to 7-11 and you walk by a homeless person asking for money why you did or did not give that person money. Or why that person’s asking for money. That’s not my job to tell you how to explain it to your child. But that’s our community. That’s life right? And I don’t wanna bring the bar down. I’m not comparing Liam to a homeless person but this is something our society looks at as being a negative part and how to explain it.
I don’t know how you explain it because I’m not you and I don’t I obviously don’t parent like you because I would I would never ask me that question.
You went on another way where you’re like well if I make a book about Liam then you better make a book about why your child has blond hair and your child has blue eyes.
Tell me why your child is different, which I think is great. I mean that’s what we do for Every Kid Counts Week. Your differences make you who you are and everybody is different. So I think my actual responses would be: I will make that book if everybody in the class makes that book.
The kids don’t need it that’s the thing.
I will say the parents want to book the parents need to book in some ways. And the book could help some parents. I was just at a different spot where I was kind of tired of having to defend my child’s existence. And at five years old he was in a class with peers his own age. He started kindergarten at five. That’s when typical kids start. At that point I was so tired of fighting and having to defend my son’s existence at that school. I was tired that I had to fight to get him in an inclusive classroom that I had to fight to keep him on curriculum. When he already knew his colors and all these other things that they were teaching him. I had to fight for so many things at that point. That mom didn’t know what she was walking into. So I would say: if I knew then, I would maybe take a deep breath before responding. I would probably respond the same way by saying I think it would be good if my son’s gonna make a book that everybody make a book so that way the kids can understand that everybody’s different. And then I might have had a friendly conversation with the parent.
Probably doing that would have made it easier to just let it go.
Yeah because I think that in kindergarten, as parents, we we really didn’t have many friends. Because I think we were defensive. I can say that. I know we were defensive. Because I was tired of the comments, I was tired of the questions, I was tired because it came from not a place of do you really.. What are you really asking? Honestly, I would probably had more respect if somebody actually asking what they were really asking instead of the roundabout way of “how do I talk to my child”. I don’t know how you talk to your child and it’s not my job. It’s not my place and I would never assume it to be.
Liam is part of the world, he is a part of our community. Every child is and that explanation comes when there’s a question and the kids didn’t question. The kids except Liam and especially in kindergarten. They accepted Liam with no questions.
So I think I think maybe we should wrap this one up, but what I think if we knew then we would trust more, worry less, choose our focus and celebrate the heck out of every day. Every birthday. And whatever you want the celebration to be. Whether it be every day or every week or whatever. Celebrate that. Educate ourselves. Be their voice. Also, don’t be afraid to be your own voice. I’d come from a more compassionate place because I think that having more compassion would have helped me see that I actually am in a place where I can have compassion for them. Just as they could have compassion for me.
So let’s go celebrate.
I’m ready to celebrate.
Thank you for joining us.
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