Caring for Two Special Needs Children in Family

Like so many young women, Angie thought she would marry and have a beautiful, perfect family. But life has a way of putting some speed bumps on our road in life.  When she and her wonderful husband, Brett, had their first child, it looked like her wish had come true. Their oldest daughter, Anais, was bright, precocious, and very active. So when they had her second child, Angelle, she and Brett realized early on that things were different. At three months of age, she wasn’t acting like a normal three-month-old. As time went on, she wasn’t sitting up or crawling and was nonverbal, but she had a very lovable nature.  So Angie turned to her Mom, who recommended taking her to the pediatrician. Unfortunately, the doctors couldn’t do a full assessment until later. Finally, at age one, she received the diagnosis of cerebral palsy, which is a kind of umbrella for many different symptoms. One of the things they were able to correct quickly was her eyesight, and glasses helped tremendously.

Brett and Angie found a physical therapist, whom they considered an angel, to do intense therapy for six hours a day, and Angelle did begin to walk. However, since she also has scoliosis, she can’t walk normally.  She is still nonverbal. Despite all of hurdles, Angie says, “I believe God chose us, and Angelle chose us.”

Their third child, Grant, was a surprise. He was their third child in five years. It became clear early on that he manifested behaviors that matched autistic children. He was diagnosed with mild to moderate autism. Angie says that Grant “lives in his head.” He talks all the time, but he mostly repeats movie lines. He doesn’t have physical issues, so he doesn’t look different. Angie feels that autism is such a baffling disorder. For example, initially he would only eat five types of food since he has food texture issues. However, he has come a long way with help and love.

At first, Angie wondered why she was given another special needs child, and Anais struggled with having two special needs siblings. However, both Brett and Angie’s mom were a huge help. As they were growing up, it truly took three adults for three children. Also, Angie has nothing but good things to say about the Plano Independent School District for her children.

Angie says, “I can’t look too far ahead as it becomes too overwhelming, I have to simply trust in God.” Brett is a personal trainer and rises early so that he can be home in the afternoon to help. Angie works part-time out of her home. Together they are in the trenches 24/7. She says Brett’s strong faith has been a huge help, and they are celebrating their 30th anniversary soon. They manage to have “daytime dates” every Friday as they are just too tired in the evening.

Their oldest daughter lives in Montana and, as much as they want to visit her, it is very difficult to take a family vacation. Just going out for dinner causes problems as Angelle has verbal outbursts which frighten people. Although Angie explains the situation to people, it is frustrating. She says that people say, “I don’t know how you all do it.” Angie and Brett do not feel special – rather they are like any other couple who would do anything for their children.  “It is what it is. You have to make the best of it,” says Angie.

Grant is now 16, Angelle is 18, and Anais is 20. Throughout the years, Angie says her greatest lesson learned through caregiving was humility. She didn’t get her perfect family, but she wouldn’t choose differently. “God has given us our children for a reason,” concludes Angie.  

What has Helped:

  • Prayer is at the top of the list.
  • Trust in God.
  • A very supportive husband.
  • A mother who is always there to help.

Scripture Verse:

Matthew 19:26 But Jesus looked at them and said to them, “With men this is impossible, but with God all things are possible.”

Prayer

Dear Father, there is a purpose for the difficulties in our lives. You always have a plan for us. We can count on You to give us the strength and the acceptance we need to see us through all of our trials. Help us to come to You with a grateful and trusting heart as Angie and Brett do each day.

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Siblings Work Together to Care for Mother with Alzheimer’s disease

Siblings Sherri, Jacque, and Mike have learned together how to care for Dorothy, their 81-year-old mother with Alzheimer’s disease. Although they don’t all live in the same city, they have worked well together – each bringing their own strength to the situation.

It has been a long journey. During Christmas of 2009, it became obvious from her behavior that Dorothy needed help. She was diagnosed by a neurologist in early 2010. During 2012, the family realized that she could no longer continue to live alone. After three attempts, they found the right home for her. Since then, they have been able to divide the care.

Jacque lives away from her siblings, so she deals with paperwork issues like renewing insurance plans, maintaining retirement package updates, etc. She’s also the most informed regarding the latest medications, so she often provides insight when they are discussing medication changes with one of the doctors. She sends Dorothy special treats throughout the year, like roses on Valentine’s Day. When she returns to St. Louis, Jacque always schedules one or two days just to be with Dorothy. Both sides of the family are in St. Louis and want to see Jacque, but she makes time alone with her Mom her priority.

Mike has been the “man” of the family since their dad passed away 20 years ago, so he has always handled Dorothy’s finances and big decisions such as selling her car, home, etc. He keeps Jacque and Sherri in the loop and asks their opinions. He is her power of attorney for both legal and health issues. Mike is the primary caregiver for her more now that he is retired, so he stays busy taking her to doctors and other appointments. When Dorothy gets out of sorts and refuses her medicine, Mike seems to be the only one who can persuade her to take it. So he handles those kinds of phone calls as well.

Before Mike retired and was able to help more, Sherri was the main caregiver. She was working part-time, raising a family, and is a pastor’s wife, which means she has an extremely busy life. Even though she handled all of the shopping and doctor appointments, she still felt guilty that she wasn’t there enough. And of course, there were times when she was simply overwhelmed.

Sherri says she learned three valuable lessons from caring for her mom. First, Sherri says, “I’ve changed as much as she has.” In the early stages of the disease, Dorothy was upset about everything, and Sherri took it very personally. She learned the hard way how to diffuse the situation. She says now that although it still makes her sad, it is no longer personal.

She says, “Lesson two was to learn to love her as she loved me – a mother’s love in reverse. I want to model that for my children. That no matter what, that is how you love.” She has a special needs son with Asperger’s Syndrome, and it is especially important to her that he sees this example.

Lesson three, according to Sherri, has been to become an advocate for her mother. She realizes that her mother doesn’t have the words to describe how she is feeling and doesn’t know the questions to ask, so Sherri has learned to be her voice – her mouthpiece.

The progression of this disease has been difficult to watch as their mother was one of the smartest women they have ever known. She worked in management for McDonald Douglas back when women just weren’t in management. She was a trendsetter and a very strong, independent woman, even after being a widow for 20 years.

The siblings have found new ways to connect with their mom. Pictures in photo albums help to jog her memory and initiate conversation. Her long-term memory is better than her short-term memory.  She still remembers words to old hymns and loves to sing. The family has learned to adjust to all the changes in their lives with God’s constant help. They feel that God has turned the negatives of this disease into positives.

What Has Helped:

  • Prayers have played a huge part.
  • Meditation.  
  • Sherri’s church members have adopted her mother.
  • The book, Creating Moments of Joy, by Jolene Brackey.

Scripture Verses:

John 13:34 I give you a new commandment, that you love one another. Just as I have loved you, you also should love one another.

Philippians 4:13 I can do all things through Him who strengthens me.

Prayer: Dear Father, these siblings model Your unconditional love for us. Continue to give them strength and hope. May we all learn valuable lessons about life and living from following Your perfect example.

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