Interview Linda Atwell Shares About Her Life and Book: Loving Lindsey: Raising a Daughter with Special Needs

Interview Linda Atwell Shares About Her Life and Book: Loving Lindsey: Raising a Daughter with Special Needs

Mom-author Linda Atwell’s memoir, Loving Lindsey: Raising a Daughter with Special Needsis a story that will stay with you a long time. I could not put this book down! And it must be so for many others as Loving Lindsey: Raising a Daughter with Special Needs is an Award Finalist in the “Parenting & Family” category of the 2017 Best Book Awards.

Linda Atwell wrote, “When “Loving Lindsey” was finished, I recognized that I had actually wanted so much for my girl—despite her intellectual disabilities—to get what a typical kid gets: independence, romantic love, purpose. Fortunately, Lindsey not only wanted, she demanded these things for herself. And, for the most part, she’s succeeded. But with such desires, such goals, sometimes there are pitfalls. Bad things can happen. Yet I hope “Loving Lindsey” readers will see the success people with special needs can achieve when offered parental, educational, and community support. They often have more abilities than we give them credit for. Lindsey continues to surprise us all the time. »

We are looking forward to tap on Linda Atwell’s special needs parenting experience through this interview.

Lorna: Congratulations on a wonderful book! You have found the perfect way to share your daughter’s years from the age of 19 to her 30th birthday. Your detailed accounts seamlessly flow from adulthood to childhood. Like you said in your book, your life “turned out to be a roller coaster ride with many loop-de-loops”.  How is Lindsey now? Is she able to live independently and keep a job? What are the biggest challenges for your daughter with special needs?

<<Linda Atwell :  Today, Lindsey is doing great. She is 37 and lives in a one-bedroom apartment. She still works at State Farm and had her 10-year anniversary there! She also still has her two cats, Sally and Cuddles that keep her company. But you are right, her challenges are ongoing—that is why I started this with somewhat of a disclaimer—“Today.” Tomorrow might be a different tale.

Not being able to drive is one of Lindsey’s biggest challenges. She uses several different transportation options: a provider (state-funded person who takes her places), trolley (local service that provides rides for the elderly and people with disabilities), and us (her parents). A few friends and family members help when other options are exhausted. But for as long as she lives, destinations that require more than her own two legs to get there, will always be something she has to schedule.

Friendships are another challenge. Her relationships (other than family and family friends) are somewhat fleeting. People do watch out for our daughter, but she doesn’t have close friends. Lindsey says she likes it this way, but I think her life would be fuller if she had even a few friends to socialize with.

And last, Lindsey is stubborn; she’s set in her ways. She does not like change (just like many neuro-typical individuals). This stubbornness keeps her from expanding her horizons, i.e. such as being open to meeting new people, participating in group events such as Special Olympics. She tells me she likes her life the way it is and has no intention of changing a single thing.  Since she appears to be happy, I try to respect her decisions.

Daughter with Special Needs Learned Life Skills in High School

Lorna: In your book you explained that for high school you opted to keep Lindsey in special education classes where she learned life skills instead of academics. During those years what are the life skills she learned that helped her most for adulthood? 

<<Linda Atwell : The special education program within our school district concentrated on helping Lindsey complete job applications, job shadowing, typing/using a computer, shopping, and cooking. She learned to count money (sort of) and use a calculator fairly efficiently. Some of these life skills were more successful than others.

Lindsey took to shopping with gusto—and tries to spend any money in her pocket immediately—but cooking (except for microwaving meals) holds little interest for her. And since she’s kept her job at State Farm for 10 years, I think they must have taught her the importance of dressing professionally, showing up on time, being respectful of her boss, and performing her job to the best of her ability. She does keep her apartment clean and tidy but that might be the way she was raised rather than related to academic training, or maybe the job training rubbed off on her domestic duties?

Lorna: For other parents raising a high-functioning teen with intellectual disabilities what parenting tips do you have to get them through the teen years?

<<Linda Atwell :  This is such a difficult question because what worked for Lindsey may not work for another child—and we had many things that did not work at all. However, if I had the opportunity to live her teen years over again, I would try to encourage Lindsey to be more involved with organizations such as Special Olympics or programs that encourage giving back to the community—mainly for the social possibilities these could offer my daughter.

Lindsey did attend school dances, sporting events, and volunteer programs, but still, she did not make lifelong friends. People with disabilities are often friendly, but do not necessarily have relationships that last (at least in Lindsey’s case) and I think they can feel more isolated over time. I also feel that when Lindsey was growing up (in the 80-90s), we did not have the Internet and therefore did not have access to information on programs that might have benefited our daughter.

As far as us (the parents), if I would have tried harder to find other parents going through the same or similar struggles, I feel that would have been helpful. Instead of finding support groups, counseling was my go-to for support. That decision turned out to be very beneficial to our family.

Lorna: You were able to have a small cottage behind your house for your daughter to live in. Not all families will be able to do that; therefore, what are your thoughts on “group homes”? When choosing a group home, what should parents be looking for to make sure it is a good fit for their young adult?

<<Linda Atwell : You are right about the cottage—we just had an extra building on our property, but that is not common. It was the way we could allow Lindsey to live indpendently, but keep an eye on her at the same time. That only lasted a year, though, because we moved from that residence to one that didn’t have such an option. One of the main reasons we tried the cottage first was because I was petrified of Lindsey living in a group home, and yet I wanted her to live independently from us. Searching other alternatives was more challenging back when Lindsey first moved out, because again, no Internet. Now, internet searches give parents and caregivers access to ratings and comments from previous residents and/or their family members so they can make better decisions.

Since Lindsey has never lived in a group home (to date—but I’m no longer opposed to the idea either), I don’t have any first hand experience  with such a choice. If we were to consider that option in the future, I would ask Lindsey’s caseworker for recommendations, then I would make an on-site visit to see the conditions of the property and where my daughter would actually get to live/sleep. I’d find out if the home offered group activities, outings, and events so Lindsey would have more social opportunities. If I liked the place, I would ask for personal references from family members of current residents. Once Lindsey moved in, I would plan regular visits so I could monitor the care.

In Oregon, I recently learned that the goal in our state is for high-functioning adults to live in apartments with assistance (specific to their needs). Group homes (in our area) are limited, and from what I’ve been told by Lindsey’s caseworker, is that they are only encouraged and recommended for those individuals who have no other options and/or need a lot more supervision.

Lorna: What changes could employers make that would make a young adult like Lindsey feel better and more secure in a work environment? What could our governments or communities also do to help individuals with special needs get and keep a job and feel they have a place in the community?

<<Linda Atwell : This is not an area that I feel I have any expertise at all. Although I wish I was a better work place advocate for individuals with special needs, I can only speak to these questions as they relate to my daughter. For Lindsey (but I have heard this same concern from other parents), her biggest fear is getting fired. She regularly worries that when she files something wrong, she will lose her job.

Fortunately, her boss understands that one of Lindsey’s issues is anxiety and works hard to help my daughter understand that she will talk to her if she is unsatisfied with Lindsey’s work product, and she will also explain when she needs to do something different to improve her skills. Still, I don’t know how much reassuring would ever be enough. Lindsey is going to worry. And Lindsey’s boss has to have production. She also has other employees to manage. Having said that, Lindsey does appreciate regular reviews. She appreciates it when the boss reassures her or give her praise.

One of the things Lindsey’s boss did that has made a huge difference for my daughter (and I’m not saying that every business or industry would do this), but they have made it their mission—as an office—to support Lindsey. I’m sure there are times my daughter drives the staff crazy, but their team has decided that incorporating Lindsey into their work life is one of the ways that they are making our community better. I don’t think you can mandate something like that.

HOW DISABLED INDIVIDUALS CAN SAVE WITHOUT PENALIZING SOCIAL SECURITY BENEFITS

Lorna: Most parents of a child with special needs dread the future. They wonder and worry about what will happen to their grown child when they have passed away. What would you like our communities/government to have in place for individuals like Lindsey when their parents are no longer able to care for them?

<<Linda Atwell : You are right. When we are gone, what will happen to our kids? What concerns me the most about our government (yet I don’t see it changing because of fraud), is the mountains of paperwork required to be completed for Lindsey to qualify for various programs—then additional paperwork (every year) to keep or justify the benefits. If I was not here, who would fill these out? Her caseworker? I’m not totally sure, but I worry what would happen if Lindsey loses her monthly benefits, her healthcare?  It would give me great peace of mind to know that she would never lose her benefits, and/or that she would have someone who would ultimately be responsible for helping her keep them.

Another issue for me is that in the past, it has been very difficult for parents who have a child with disabilities, to save money (for them) without jeopardizing (their) government benefits. However, there is a relatively new federal program, ABLE, that allows parents to save without penalizing their child’s benefits. Parents should talk to a tax attorney or accountant in their state about how to protect their child, but it is my understanding that various trusts are available to provide long-term income/protection. It would be best to pick a person you have confidence in to oversee your child’s situation once you are gone—especially since he/she may live much longer than you.

Loving Lindsey: Raising a Daughter with Special Needs by Linda AtwellLorna: You wrote, “I hope “Loving Lindsey” readers will see the success people with special needs can achieve when offered parental, educational, and community support. They often have more abilities than we give them credit for. Lindsey continues to surprise us all the time. » Tell about a few of these accomplishments.

<<Linda Atwell : Lindsey has stayed with her job for more than ten years. I cannot believe she has been such a dedicated employee. She has learned to manage her time (as in) when she needs to leave her apartment on the days she walks versus the days she schedules the local trolley—and for the most part, she calculates successfully.

Next, she has been an incredible pet owner. She treats her cats well, calls them her kids and talks to them as if they were people (not an uncommon thing to do). I’m amazed at how dedicated and disciplined she is at making sure the litter box is cleaned, buying more food before she runs out, and feeding and watering every day.

She is totally responsible for calling and scheduling all her doctor and dentist appointments, and picking up her prescriptions before the last pill is gone from the container (at least the majority of the time). All of these things would be nothing for people without special challenges, but Lindsey has to work so much harder to do daily tasks that others often take for granted.

Finally, she is a good neighbor as well as a good citizen. Yet, conversations with my daughter tend to be very Lindsey-oriented. She is more concerned about what is happening in her world than in other people’s lives. We’ve recommended that instead of constantly talking about her agenda, that she ask questions of others. And guess what? She is! Not consistently, but it is a step in the direction of a two-way conversation rather than a one-sided one. And when she does make strides, we offer lots of praise!

Lorna: Thank you for taking part in our Author Interview Series. Happy travels and the best to you and your family!

Read Also: Review of Loving Lindsey: Raising a Daughter with Special Needs

Buy Loving Lindsey: Raising a Daughter with Special Needs  Amazon.com  Amazon.ca 

This post was written by Lorna
Lorna d’Entremont: Co-owner of SentioLife Solutions, Ltd. the company behind KidCompanions Chewelry (2007) and SentioCHEWS (2013), mother of three, grandma of 5 and wife. She is a retired teacher and special needs advocate. Throughout she has taught all levels from grade 2 to grade 9. Lorna loved teaching and enjoyed seeing the students progress in the school system. During her 30 year career she took a few years off to raise her three children.
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