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| Words of Wisdom | ||
You Shouldn't Leave The Child Behind I think that you shouldn’t have a child in your home that you can’t communicate with. So, surely, if you have a child born into your family with any special needs issues, you have to get yourself in the position to be available to the child for whatever their needs are. If it’s sign language, you need to do that. I’ve been to class, when Troy started the school, he wasn’t there alone. I drove him to school, and stayed in the class with him, everyday, four days a week. I drove him every single day. It’s a sacrifice. I had a business, I just made the sacrifice. I don’t know what it means to him to be missing in one sense. I wanted him to have everything he needed to be successful in life, so I made the sacrifice. If they’re blind, they don’t have to be deaf, no matter what the situation is, you shouldn’t leave the child behind. I think my first suggestion would be to find a support system if you don't have one. I think you need support as much as you need the knowledge. I tell people now because I've also encountered other parents who are running into this. I've just said that I've really been happy with the clinicians in my child's clinical care team; and I've suggested to other parents to call the medical care team that provides services to my child. Through email I did get in touch with other parents that adopted because I'm affiliated with Chinese Adoptions. I did talk to a couple other people through email. I would be willing to talk to other parents in the same boat. I found that helpful for me to be able to talk to someone who is a couple of steps ahead of me. That's why I've offered my services to the local early intervention so if they just want a parent speaker to come in a talk about this I'm willing to do this. When she was little I used to read to her a lot. Then, when I found out she was deaf, at the age of two and a half (she wasn't diagnosed through the newborn screening), I continued to always read to her. Now that she can go through a book or two a day. She loves going to the library. Just this past weekend she said, “Mama, can you take me to the library?” She just likes reading a lot, and she reads everyday. She likes mysteries, war histories, and a lot of books written for girls too. The One Thing I Didn't Understand... One thing I didn't understand until my child explained it to me last year was when she doesn't hear when somebody says something and we reply “Oh its ok. It's nothing…” it makes her feel like she's nothing. I've learned to not say that anymore. I understand now how that makes her feel. I think you can get very caught up in feeling that this is the end of world. When you get home you realize that it is still your child and the same person you've always been with. You realize that you just do it. You do what you can do for them. It all works out alright in the end. There Are So Many People Out There There are so many people out there who can and want to help you and you don't realize how many children and families have dealt with this before and who are going to deal with it in the future. There are so many people out there who can help you and who are interested. As a Parent, It's My Job to Educate People We did have trouble with a principal that said to me, I was trying to explain why her classroom shouldn't be located near the cafeteria or in a high traffic area, and I said those hearing aids are very sensitive and they pick up all those sounds and it doesn't filter sounds like your brain does. So he says to me “well, if those hearing aids are so sensitive, why can't she just hear like everyone else?” So you do run into people that are ignorant of the whole problem and they're not willing to listen. So, luckily, he retired. I feel as a parent, that's my job, to educate the teachers, her classmates, the administrators. Use all the resources you can. There are a lot of really great resources. At the time of diagnosis we sat down with our audiologist and she shared who some of the resources were. At that point Elise was a year and a half. We started looking at the preschools and we got involved with early intervention. We spoke with people at the Commission for Deaf and Hard of Hearing. We listened and asked questions and called back when we thought of new questions. We processed between the two of us and made decisions on what felt best. Keep going back to the people who have been through it or who work with deaf or hard of hearing people and have ideas. Every family is unique and we had to make decisions for our family. It's a journey. Stay On Top of What's Going On I guess just watching them carefully and staying on top of the schools where they are. I know that sometimes you don't hear about things right away from your kids, you're not sitting in the classroom with them. I might hear about one teacher who is doing a lot of movies or videos and it turns out my kids couldn't hear too well and maybe they were getting tested on those videos. I guess just trying to stay on top of what's going on in the classroom. I think talking to the teachers, I do try to stay back and let the kids handle things, but I always say I'm definitely there if you need me to talk to the teacher I will do that. I think just watching what is going on day to day and seeing how the kids are reacting to their daily situation because you don't want them too stressed. Asking a lot of questions, not being overbearing, but kind of knowing your child and watching and seeing how they're reacting to certain classes. Just be there. Have high expectations. Don't lower your expectations because of the hearing loss. I think that happens in the general public. I think there's an assumption that goes back to the “deaf, dumb, and mute” image. Expect that your child can do most of these things but at the same time make allowances for when they don't hear something. The hardest thing is getting over your own disappointment. I think you have to be flexible. Re-evaluate as you go. There's a tendency to do things a certain way and not realize that the child doesn't need that any more and you can change things along the way. Those are things that are true about parenting in general. I think you should try to network with other people because, especially at the beginning, it's nice for them to know that they're not the only one that has hearing aids or cochlear implants or whatever. And I think it helps to talk to a family that is a little further down the road than you are so you can see that these kids are doing fine in school. I remember the first few weeks. You kind of feel like your world has ended and it's hard for you to see how your child is going to do in school, how are they going to do with their friends. All of these issues in their life, and if you can see another child that is successful, has friends, is doing activities, is doing well in school, for me that was helpful. I think when you're first in that, you can't see your way out of that box. It's overwhelming and there's so much information coming at you. I tell other parents it's a grieving period. You have a child and you expect their life to be a certain way, and now you realize their life is going to be harder. They're going to have to work harder than the kid next to them. It's just a hard thing. Help Them Learn to Work With It You have to be a realist, you've gotta get what you can for your son or daughter, but you can't expect the world. When they get older it's not going to be there. You can't expect if Evan goes to work for a company or something, they're not going to soundproof the building for Evan. It's their disability, and they need to learn to work with it. We can say what we think, we can only do what we think is best for them. We have no idea if it's working or if it doesn't. It's hard to find that balance. It's not the end of the world. It's not a big deal. It opens up a whole new way of thinking, a whole new world. You get to learn sign. It's all in how you look at it. You can walk through life “oh poor me poor me” and that's what I try to teach Evan; “you're not poor Evan, you're Evan Logue. You're not Evan Logue the deaf kid, you're Evan Logue, no labels on you. You can't go through life feeling sorry for yourself, you won't get anywhere.” He has to learn to fight for himself, he's gotta learn, and his brother Tom has gotta learn too, this is their disability, it's not mine. We just help them through what we can. We're not going to be able to be there all the time for them, when they go to college they're not going to cater to them. I think that's more of a father's thing, you've gotta have that. Be very patient. Stand up for what you believe in, go with your gut instinct. I know my husband and I sometimes disagree over what they need. He thinks I'm asking for too much when we go to the meetings. He's very laid back “things are fine, don't worry about it”… You gotta go with your gut and ask for what you think they're gonna need. Sometimes you get confused between ok should I put my son in this program or should I put my son/my daughter in this program? Or what should I do? Should I go with sign language or with oral? I think all you need to do as a parent is just to try to read more about how other families been through this and learn from them. I really recommend reading about families who've done it before you, families who been going through it and it's a long procedure; families should not give up, the outcome's so great. Maybe the first three to five years is the hardest but after that the kid can easily communicate, the kid can easily be independent. The hard work at the beginning might be difficult to the parents but you know by trying to keep up and trying to work hard, I think the outcome's so great. So, this is what I really recommend for families with hearing impaired is to stick together and work hard, try to find the best program and get your son or daughter in it. I think a big part is to just find other families. Sometimes there's nothing better than just talking with other parents. And you can talk about it with your family and friends, but unless you're in that boat, it's nice to talk about with people in the same situation. There are people around in the same situation; finding other people to talk to is really helpful. I would say definitely in the beginning to explore all your options. It's hard, you'll meet some people that you totally trust and value their opinion and then later on you find that that's not the path you want to take. You have to talk to a lot of people and listen to your instincts. Think about what is right for your specific family and your specific situation because it is going to be different for different kids. Also, seek out other families who are in the same situation. I think that's so important. There are so many ways to do that but you have to do some leg work on your own. You can get them through early intervention, through hospitals, and through the schools but you do have to seek them out. It is valuable to talk to other families. Reach out. Reach out to your support systems, your family and your friends if they’re supportive. Reach out to the medical profession. Find those resources. There are tons. Start with your doctor or the hospital and you can search the website for state services. Educate yourself. There’s the emotional support and then there’s the factual research support. Find the emotional support if you need it. I think we all do one way or another. Some people take it harder than others. Reach out and lean on people. One of the things I’ve always tried to think it that you can get really caught up in this really emotional spiral and you can’t see clearly to make progress. They feel like they haven’t been blessed. Every child is a blessing. When your child is born with a disability or a handicap you might find that it’s not always clear for a moment. Reality is that your family, your friends, your doctors, your teachers, and medical technology are all blessings from God. You can use these blessings to apply against the problem that you’re facing. Don’t forget that God created the surgeons’ hands and the engineers’ brains, so effectively God created the implant, the speech therapists, the pediatrician, the otolaryngologists, the surgeons. Take all those blessings and apply them in a way that your feel is appropriate. Love your child. If you love you child the rest of it just comes. Nothing else is that important. Social issues are the absolute worst. My advice is to get the school involved. First and second grade were hard and kindergarten was terrible. Third grade gets better and fourth grade gets even better. She started taking art lessons and that helped a lot. One thing that's really hard is that she's frustrated and she has to deal with a lot. She loves Wednesdays and Fridays because we don't do anything. She only has Girl Scouts every other Monday. Give her down time and time to relax. Whatever you do, try and connect with other parents as early as you can and especially with parents whose children are a little older than yours. You can get a sense that you're not really that unusual or odd. Your child is hard of hearing or can't hear at all but they're not so impaired by life that they can't function. You need a reality check. As well-meaning as your medical professionals might be, they are focused and have the laser vision on the problems. You need to hear what's normal. All I can say is that an illness or a hearing loss or anything life can throw at you if you think of it as a project that needs to be coped with it is much easier to put one foot in front of the other and do the research and find the resources. In this area there are so many wonderful resources. You can tackle it. If you step back and figure out what you need to do to get through it you can get somewhere not just acceptable but you can have a good life. It's easy to flip out when something happens but just step back and you'll get through it. The only suggestion I have for parents of children who are deaf or hard of hearing is to arm themselves with as much information as they can about resources that can help aid their family, so their child can have access to as many opportunities as possible. |
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Copyright © 2007, Children's
Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. Updated: December 23, 2007 |
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