I found this today. Very good article. Hope it's a blessing to all.
Up Close & Personal with Maura Weis
The hardships and blessings of raising a special needs child.
by Mary Darr Maura Weis co-authored
Miles from the Sidelines: A Mother's Journey with Her Special Needs Daughter (Sorin Books, 2008). This heartfelt book describes the emotional and spiritual journey the Weis family has experienced with Hannah (13), whose name means grace of God. Maura has been married to Charlie, the football coach for the University of Notre Dame in South Bend, Indiana, for 16 years, and also has a son Charlie, Jr. (15).
In 2003, they started Hannah and Friends (hannahandfriends. org) to give out grants of up to $500 to people with low to moderate income who have kids with special needs and need a special bike, or therapeutic horseback riding lessons or music therapy. A year ago they purchased 30 acres in South Bend to build 16 residential homes for adults with special needs. MomSense Editor Mary Darr talked with Maura about the challenges and blessings of raising a special needs child. Editorial assistance was provided by MOPS Area Coordinator Peggy Brinkmann from Wisconsin.
Describe your daughter's developmental delays.
Although Hannah was diagnosed with autism when she was 2½ years old, that diagnosis never sat right with me. My maternal instinct told me that something wasn't right with Hannah, but it wasn't autism. I'd tell the physicians, "She's really not talking." And they'd say, "That's OK, but does she understand?" I wasn't sure what she understood. But I knew something was wrong with her diagnosis. Ten years later we discovered Hannah has a rare seizure disorder called Landau Kleffner Syndrome, which starts around age 15 to 18 months. That's when Hannah's developmental complications emerged. We didn't see the seizures happening because they occurred at night. But they caused her mental retardation and developmental delays.
How is Hannah doing today?
She's 13, and the doctors told us her seizures will end in her mid-teens. But we did an EEG back in April, and found out she's seizure-free! Every night when I put Hannah to bed, she asks me, "Are you happy?" She's so sweet! Other people have 13-year-old daughters with whom they're struggling with so many issues, and we have the sweetest teenager ever. Hannah is like a 4- or 5-year-old who has a limited vocabulary of about 50 words. She perceives much more than what she verbalizes. She's a smart girl, though, and knows how to get her point across. And she's very independent. You can sit with her for awhile, and when she's had enough of you being around, she'll escort you to the door and say, "See you later." We take care of all her daily hygiene—we have to brush her teeth and bathe her. But she's really great about it; a lot of kids with special needs are not. I look at our life with Hannah as something God wants us to do. We love her no matter what—that's unconditional love.
Did you struggle with how and why this happened to your daughter?
I don't know how this happened to my daughter. Maybe it was from the extensive kidney surgery she had at two months old. The doctors can't answer those questions. I do struggle knowing none of the seven specialists I took her to over the years thought to give her an overnight EEG to determine if she was having seizures. Why did it take until she was 10 to discover she was having seizures, and then to age 12 to learn there was a name for it? I try not to think about it much because I want to remain positive. At least we found out what was happening to Hannah. If we'd found out earlier, I'm sure she'd still have delays, but they may not have been as severe. Did you blame yourself? I asked myself, What had I done wrong while I was pregnant with her? I thought of everything I'd eaten during my pregnancy. I didn't drink. I've never done drugs. I knew I'd had a virus and was sick for two days. But I cannot blame myself. And I don't blame my husband. We both know this is the child God wanted us to have. She was supposed to be in our lives no matter what. We were meant to be together.
How has Hannah impacted your family?
My husband and I are super close, and one of the reasons is because of Hannah. Our whole family is closer because of Hannah. We're a team; together we figure things out. Hannah has taught me every day is a blessing. She wakes up with a smile on her face even when she hasn't gotten much sleep. And she never complains about all the things she has to deal with: limited vocabulary, fine motor and major motor skill problems, poor eyesight.
Where have you found support as a parent of a special needs child?
I'm a happy person by nature, but after Hannah was diagnosed with autism, I felt sad and depressed. Having a child with special needs is so devastating early on. I knew my kids deserved a happy mom, so I went to counseling one hour a day, once a week for nine months. I was able to talk through my grief. Some people with special needs kids like to join groups. But those groups didn't work for me. I found help on the Internet. I also found help at Hannah's school from other moms who had older children with special needs. They thought positively about their situation and embraced it. And my husband, Charlie, has been a tremendous support. Both parents of a special needs child experience separate times of mourning and then of moving forward to embrace their child for who she is. Kids with special needs are God's special children. That's why I say in my book that parents who receive them are special, too. But God has helped me the most. And I feel closer to him now more than ever. My trust in him leads me along the path I follow.
How can someone sensitively ask about your child's special needs?
I've felt a lot of prejudice toward Hannah from other people. But there also were some adults and children who would say to me, "Can I ask what's wrong?" I embraced them because I'd rather a person be honest. Sometimes Hannah would have a meltdown in the store. But if only someone would have just said, "Could I give you a hand?" It doesn't cost anything to offer help instead of looking at someone as though their child's a brat. It's been difficult because Hannah looks normal and then will have a complete meltdown. I understand people are scared, but it's time for us to step out of the box and be kind. And people who've extended their hand to us have been happy they've gotten to know Hannah.
How can moms offer support to a mother with a special needs child?
Offer her an hour to go to the gym, to read a book, to go for a walk or even to go to the store without her child. That hour is like gold! It doesn't cost any money. Yes, it's going to be a difficult hour. But once you get to know that child, you'll look forward to your time together. And your friend will be so grateful. Or help a mom attend church. For instance, we can't bring Hannah to church because she can't sit for an hour. It's also like gold to a parent when you say, "I know you're going through a really hard time. If you ever need me, I'm here to listen to you." Moms of normal children may feel uncomfortable reaching out. I've lost friends because they couldn't accept my daughter. But when you can reach out, your friendship will be deepened for life.
How do you create a "normal" life for the sibling who doesn't have special needs?
Parents of special needs kids should never forget they have another child. Our son has had a good childhood because we've made sure he's gotten the attention he deserved. We've taken him on vacations with us by himself. That's important, especially since he's a teenager. Hannah doesn't travel well, and he needs his alone time with us. When he was younger he'd say to me, "Mommy, that's enough Hannah time; time for me now." And the normal children will be the ones to help your special needs adult when you're gone. You want to make growing up a good experience for them so they don't resent their sibling for getting all the attention.What would you say to a mom who's struggling to accept her special needs child or who's angry at God for "allowing her child to suffer"? There is always so much guilt surrounding parents of a special needs kid. I tell people, "Don't feel guilty because that's another negative emotion you're going to put on top of the ones you feel already."I don't think God points his finger at us and says, "This is what's going to happen to you!" Some things just happen in life. It's difficult to realize your child is never going to do the things normal children do. And being angry at God can be a very natural response. But God can take it if we're angry at him for a period of time. He's there for us no matter what. He understands.
