Importance of finding a support system

People who can and want to help
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.

 

Find A Support System
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.

 

Advice for Other Parents
I think one thing that I struggled with was that I felt like my child’s life was in a hospital or a doctor’s office. I know it’s important to never miss an appointment but sometimes just rolling around in a field, or blowing bubbles in the driveway, or stopping to pet a dog is important too and I think that’s something people don’t stress enough to us, knowing that it’s okay to also do normal stuff.

It’s important to know that it’s okay to ask for help and also to talk to people. There are support groups popping up and you should also go to community events because it’s great to see other people just being real with their kids.

I do think that when your kid has any disability, parents should either be in a support group or some kind of individual therapy because it’s stressful and a lot of the stress is the unknown…parents should also just take a break every once in a while because it’s exhausting. Let yourself be human because you kind of feel like you have to be a super human parent when your kid has this permanent problem that you don’t know a lot about. I think it’s a process for everybody and you just have to let yourself have that process and that can be really challenging.

 

Network
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.

 

Reach Out
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.

 

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.

 

Connect With Other Parents
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.

 

Rely on Other’s Experiences
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.

 

Stick Together
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.