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Raising a family with special needs

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Natalie Bailey
Thursday, February 11, 2010
 
 

Breathe! Faith or fear? The universe is abundant and full of resources.

These words of encouragement, written in pen and marker on strips of construction paper, are taped on the cupboards and doors of Kathy Lavin's Chicago home-a casual, inspirational complement to her paintings that hang more permanently on the walls.

Painting is a hobby.

Life is a mystery.

And there's a divine timing to it all, Lavin says.

For Lavin, 43, this belief is as much a part of her life as the supposed coincidences that have shaped it.

It hasn't always been easy for Kathy to embrace the divine timing and mystery of life, though. It's a daily practice, she says.

As her children filter into the house and drop their things by the front door, Michael asks, "What's been happening?" Kathy replies, "Oh we've just been hanging out; Emily's doing her thing. You know."

Emily, bright and curious like any 13-year-old, spends her time after school captivated by a television show and a snack. Unlike other teenagers, Emily struggles to communicate-an obstacle that proves frustrating and heartbreaking for the Lavin family.

Kathy's first child was born with Down syndrome and, at first, the young mother felt angry. But she says she has decided that Emily's birth, paired with her years spent working in the field of disabilities, might have been much more than a coincidence.

"I think you attract certain things in your life," she says.

After graduating from Boston College with a degree in human development and education, Kathy started her career working with people with disabilities in 1988.

First she oversaw group homes for Catholic Charities in her home state of New Jersey. Eventually, at age 27, her path led her to Chicago when she began doing research at the Institute on Disability and Human Development at the University of Illinois at Chicago.

She forged lasting bonds with people in the group homes and those at work, though her managerial roles didn't require it.

"True to Kathy's nature, seeing what she could do and how she could help people flourish was her motivation," says Selima Ani, a former co-worker.

At the same time, Kathy met Jack Lavin and they married in 1995. A year later in May, Kathy graduated from the Jane Addams School of Social Work. Emily was born in June. Kathy felt her life fill with fear.

"Even being a professional, when it happens to you, it's a totally different ballgame," she says. "I thought, 'I can't do this. I cannot go back to working with people with disabilities.'"

Lynda LaCombe, Kathy's friend since college, says Kathy has always been open about the emotions she went through when Emily was born.

"Kathy loves Emily and delights in her, but she has always been very honest that it was difficult," LaCombe says. "Being a person who worked with adults with disabilities, she knew right away what Emily's future could hold and she grieved for that."

In the years after Emily's birth, Kathy shifted gears from her professional path and worked as an advocate and volunteer. Among other endeavors, she became a founding board member of Belle Center of Chicago, a non-profit organization serving the needs of children with disabilities. She also had two more children, Michael, 11, and Katie, 5.

Despite her love of Emily, "having Michael was a healing moment for me. It proved to me I could believe in myself to create something perfect," Kathy says.
Meeting the challenge of having a child with special needs only a year into her marriage, Kathy's mother worried for her daughter's relationship with her husband, Kathy says. But she and Jack have become closer.

In fact, along with a trip to the cardiologist and ophthalmologist, Emily's doctor listed date nights for the parents as part of the treatment plan for Down syndrome.

"So we date every Friday still," Kathy says.

After 12 years of volunteer work and raising her children, Kathy is now the director of community relations at Neumann Family Services.

It's easy for moms to get lost in their children, especially if one has special needs, Kathy says.

"The biggest lesson for me is to say it's OK for me to put my oxygen mask on first," Kathy says.

And with that, she went back to spelling "Thursday" for Katie, asking Michael about his day and making sure Emily had everything she needed.

This article appeared in the Spring 2010 edition of Chicago Special Parent.
 
 
 
 
Your daughter is PERFECT

By Mary Fisher on Tuesday, August 30, 2011

As a mother who also had a first born with Down Syndrome, I could not believe this part of the article "Despite her love of Emily, "having Michael was a healing moment for me. It proved to me I could believe in myself to create something perfect," Kathy says." I was outraged. My daughter and her daughter are PERFECT. There is no reason to think that just because her daughter has Down syndrome she is not Perfect. I am really concerned about a parent and a magazine that would print that point of view.

encouragment

By Amanda Hill on Tuesday, August 30, 2011

wow, it is humbling to see what parents with children of special needs deal with every day. As a future teacher, I know that I will be crossed with some students with special needs. This reminds me to keep in mind what the parents do and know about their child-to respect them thoroughly, and understand that I will never understand what they do-no matter how good of a teacher I am-unless I one day have a child with special needs. The outlook you have is encouraging to anyone that works with children of special needs. The unconditional love makes the challenge worth it, and you show that through this video.

dear kathy

By Josh Copeland on Tuesday, August 30, 2011

I think that it is great that you look at all of the things in your life and just see all of the positives. It makes me look at my life and see that no matter what happens i can work through it. Also this video made me realize that it is better to live in faith and not in fear. if you live in faith you will see the little things in life and see how great those are. Thank you so much for sharing your experience.

Thank you

By Molly Ricker on Tuesday, August 30, 2011

Thank you for sharing a part of your family life. It was very helpful to see how children with disabilities function at home which could be different from school. This article could be very helpful to teachers who are going to have students like your daughter and how to work with them. It was also a blessing to hear someone be honest about their situation. You handled the situation and was honest with how you felt. That takes a lot of courage and strength. This is such a good tool to future teachers and thank you so much for sharing your story.

Believe

By Courtney Jeltema on Tuesday, August 30, 2011

I can't even image what you have gone through. I don't know what I would do if the doctors told me your child will have Down syndrome, or another disability. I imagine that it is very difficult, especially when one has difficulty communicating with his or her child. I think your strength and testimony is an encouragement to anyone reading. You are honest with yourself when you say it is difficult, yet you continue to work hard. And never forget that God is always there with you, giving you comfort and strength. I pray that you and your husband never forget that. I'm glad to hear that the two of you are working hard together because it is a battle that is hard to face alone. Keep struggling and keep praying. God Bless.

a wonderful lesson

By Kelly VandenBerg on Tuesday, August 30, 2011

Kathy, I appreciate how open you are about your life experiences. I often wonder what it would be like to have a child or sibling with special needs, and I really appreciate your honesty in how you responded. Thanks for the reminder that it's okay to go to through a process of frustration before you fully accept what God has placed in your life. As a future educator of beautiful children such as your daughter, I am excited to be able to help the students, but also help and learn from parents such as you, as well. I never know what is to come in the future, but your story has been a great reminder that no matter what is thrown our way, we can make it through, one day at a time. You are wonderful woman and I am so thankful that you and your husband responded the way you did after the birth of your child, thanks so much for the role-model you are. Kelly

"a wonderful lesson"

By Katarzyna Ledworuch on Tuesday, August 30, 2011

Thanks a lot for sharing such a personal story, it is really touching. Being a first time mother, or a mother for that is really emotional and when everything doesn’t turn out just like planned it can really be stressful. Special needs children require much more attention and you are doing a great job. We all need to understand that children with disabilities are also made by God and your family is a great example. I love that you have days for dates because it is good to also have sometime to reenergize with such a busy life. Teaching students with disabilities is probably hard but your mindset sounds really good, and I wish you the best. It is good to hear parents talk about struggles and also their families because it makes us the readers much more aware what the child is like at home, and for future teachers it is a good tool to read some articles about families living with disabled children. Thank you so much for sharing your family.

Dear Kathy

By Steven Dell on Tuesday, August 30, 2011

Kathy, I understand how difficult it can be to have some body in your life with down syndrome at times but I also understand all the blessings you get from it that you cant get anywhere else. My aunt and several other friends of the family to which im close have children with downs or something very similar and I feel that the exposure has helped me to see things in a different light, especially when it comes to faith because the same God that made the universe made them and its in his plan and his purpose and its good. Some of the best moments I've had with family is spending time with my aunt and just making her laugh till she can't anymore and no matter how you felt before in the day it always brings you up instantly and thats a gift unique to her that I cherish.

a wonderful lesson

By Melanie Lawrence on Tuesday, August 30, 2011

Kathy, thank you so much for sharing your story! It really helps people realize that no matter how much experience you have with people with special needs, you can never be completely prepared to have a child of your own with a disability. As a future teacher, I need to properly equip myself to meet the needs of students with disabilities. In our Special Education class with Professor Post, we are placed in SPED classes in different schools in the area. Gaining this experience is very important because it helps prepare us for our future careers in teaching. Thanks again! Melanie

"re: a wonderful lesson"

By Kristen Faber on Tuesday, August 30, 2011

Hi Kathy! Thankyou for sharing a little bit about your family with us. I also have a special needs child in my family. My little sister has tuberous sclerosis. It is very challenging and frustrating at times. She cannot talk, so communicating with her is also very difficult. I think those words of encouragement on your walls are very important to remember, especially the one about breathing. This is not only for the parents or the family members, but the child's teachers as well. I think that is something that we, as future teachers, need to learn right away. Teaching students with special needs can be difficult and frustrating, but we just need to take a deep breath and stay relaxed when we react in rough situations. I have learned that early on with my own sister. It is easier to communicate and handle certain situations when we are at ease. Your story gives perspective teachers as well as other people insight as to what living with a special needs child is really like, and I think we can all benefit from that. Thank you again for sharing this with us! Kristen

Dear Kathy

By Jenna Rae Reidenga on Tuesday, August 30, 2011

Kathy - Thank you for this inspirational message of keeping faith and staying strong through trials. I think your approach to providing Emily with what she needs is great and it is refreshing to hear your honesty. Remembering that it is OK to take care of yourself as a person in order to be the parent for your children is a message I wish more parents took to heart. You have a beautiful family and your positive outlook on life gives me motivation as a future teacher. Thanks again, Jenna Rae

re: a wonderful lesson

By April Houtsma on Tuesday, August 30, 2011

Kathy, I really enjoyed hearing your story and am thankful that you shared it with us. I love it how you are so open and honest with the struggles and yet the joys you have been through. It really made an impact for me when you said "When it happens to you, it's a whole new ball game." We can talk all we want about special education in the classroom but now that I am actually IN a special education classroom it seems so different. Thank you again for sharing your story. The images it portrays leaves a smile on my face and makes me want to hear more. May God bless you and your family as you keep growing together.

a wonderful lesson

By Jonathon Mulder on Tuesday, August 30, 2011

Hi Kathy, thanks so much for sharing about your experiences. I can imagine how sometimes it could be very frustrating and hard. At the same time, I can see how a lot of joy can come out of these situations. I think all of us as future teachers are maybe a little nervous and anxious to see what kind of classes we will have. It's tough knowing what to do and how to deal with someone who has a disability. I hope that I can have your positive attitude and your mindset when I go into the teaching world. Not only was this blog helpful to me being a future teacher, but also as a future parent. I can see how there are going to be a lot of difficult times, but a lot of good times as well. Thanks again for sharing about your family. - Jonathon Mulder

huh?

By annonymous on Tuesday, August 30, 2011

"having Michael was a healing moment for me. It proved to me I could believe in myself to create something perfect," So let me get this straight. Are you saying that people living with dissabilities aren't perfect? Are you saying that you are? Or are you telling your son that He alone is perfect? Nice. Hopefully your "special" child in all her own unique perfection doesn't have the cognitive ability to understand the message that you have so sadly shared with the world. God, in God's wisdom created uniqueness in all of us. I challenge you to realize that those of us who know no hate or fear only love are the perfect ones! Get a clue!

re: a wonderful lesson

By Nola Sawyer on Tuesday, August 30, 2011

Kathy, I think the best part about this article is seeing just how "normal" your family really is. I actually giggled at the picture of Emily sitting in front of the t.v. because the way she was sitting is exactly the way my 12 year old sister sits, only she occasionally still sucks her thumb! I think it would be easier to be Emily's teacher if I read this article about your different emotions and experiences. I can see that you must have to work hard some days to fight off frustration. Ashley is right, it can be easy to forget that children have different things going on at home, so it is good to get some perspective as a future teacher. Thank you for sharing your lovely family! -Nola

"re: a wonderful lesson"

By Ashley Hoekman on Tuesday, August 30, 2011

Hi! I am a sophomore education major at Trinity: in Prof. Post's class. As a future teacher, I think that it is sometimes easy to slip into the mindset of "how do I adjust my teaching strategies (or other similar things) to fit a child with special needs?" We often forget about the child's life outside of school, and some of the difficulties and joys that take place there, especially when it comes to parenting a child with a disability. Therefore, I want to thank you for sharing a bit about your life and some of the aspects of being a parent to Emily. Thank you again! Ashley

a wonderful lesson

By pete post on Tuesday, August 30, 2011

Thank you for sharing Lavins. I teach future teachers at Trinity Christian College and all of our education majors must take SPED 216 - Intro to Special Education. But can anything really prepare you for having a child with special needs, especially one that can't speak properly (at least in the way you and I might)? Thank you for this glimpse into your family that I want to share with my students this week. It may just be the first small step in building empathy for parents who face certain challenges but just keep breathing. Prof Pete Post

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