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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Raising a Precious, Special Child with Autism

chase

Chase is a beautiful and loving child, who was diagnosed with autism at 20 months of age by a neuropsychologist. But his mother, Tania, knew that something was different much earlier as he wasn’t speaking and had atypical physical behaviors, such as being fascinated by the pattern of light and shadow in a play area rather than the play equipment. Tania was not surprised or devastated by the diagnosis. Instead, she immersed herself into the flood of literature about autism, its theories, and therapies. Tania is a very proactive person who looks for answers. She quit her corporate job as she also had a seven year old child and a one year old child at home at the time. She considers herself very fortunate to have been able to stay at home with all of them, and she credits Chase for that decision.

Simultaneously, through family, she was blessed to connect with a graduate professor at the University of North Texas who specialized in Applied Behavior Analysis (ABA) to treat autism, particularly in early childhood. Chase’s program over the next three years consisted of one-on-one therapy for up to 40 hours a week. Tania calls these teachers “angels” as their commitment to Chase and the family was life-changing. Tania believed that the development of language must be pursued relentlessly. Windows of opportunity exist for language development, and the first of these closes by the age of five or six.

As Chase has matured, Tania has witnessed how important it is for him to be able to express himself. She says, “Not only does language allow for further learning in all realms of life, but when a child understands his emotions and can express him or herself, the child can avoid frustration and tantrums.  As a family, we experience the positive impact of his continuing development of language on a daily basis.”

When Chase became school age, she and her devoted husband, Philip, explored the special education program their school district had to offer. They quickly discovered that the quality of services provided by the state isn’t consistent. Tania says, “I know of many families who moved their households, even out of state, to receive adequate support from the system.” She and her husband moved locally to Northwest Independent School District. It was there that they were blessed to make another wonderful connection – Chase’s lead teacher for the next few years was highly effective in the classroom and became one of Tania’s best friends.

Tania admits that she was fearful of Chase being teased or harassed by other children. Personally, she certainly experienced dirty looks from other parents and adults when Chase was undergoing a major meltdown out in public. These meltdowns would consist of screaming, running, jumping, hitting, sometimes cussing, and fortunately no longer, spitting.

Interestingly, when Chase was younger, negative responses from members in the community were more frequent and seemingly more judgmental.  Partially, she attributes this to Chase’s appearance, for his appearance alone does not reveal his developmental disorder. She thinks others might have wondered, “What is wrong with that kid? Why can’t those parents get their kid under control? Geez, get that kid out of here so I can enjoy my dinner out.”

She explains, “But for us, as well as others who have a special needs family member, we don’t want to have to hide at home.  We believe that our family as a whole, as well as the special needs person, deserve the opportunity to be members of our communities.”

Chase is now a sophomore in high school.  The staff and students at his current school are quite supportive.  Last year at Byron Nelson High School, the Senior Prom King and Queen were two members from his special needs class.  Tania believes the culture has changed.  In her high school experience, this would have never happened.  She stresses the importance of inclusion for persons of special needs in our communities and schools.  And she believes in a reciprocal benefit for typical children and adults from their exposure to and experience of what atypical persons can offer.   

For the most part, these days, the community does seem welcoming of Chase’s differences. For example, Chase’s odd behavior includes asking a stranger if they have a Wii, a PlayStation 2, a PlayStation 3, a PlayStation 4, an Xbox, and DVD player, consecutively. At first, the stranger may raise their eyebrow with confusion, but then they do have an “aha” moment and play the game, answering in succession, “No, I don’t have a Wii, no PlayStation. Yes, I do have a DVD player. It’s in my living room.”

Tania says, “Experiences like these make us laugh.  And truly, the emotions we experience as we parent Chase are quite similar to those we have with our now other three children.  Yet, the circumstances themselves are decidedly different and perhaps atypical.  Then again, each of our children, in fact, all children are very different from one another.”

Undeniably and as with all families, challenges exist. Tania’s fears include the possible negative effects her other children have endured surrounding the difficulties of having a special needs brother.  And sometimes she fears for the future of Chase’s well-being, knowing she and Philip will age and will no longer be capable of caring for him.

She says, “Nonetheless, when I consider the impact of having a special needs child, I face that much in life is relative, and one’s experience is hugely dependent on one’s perspective.  I choose to focus on the positives of life whenever possible.  Chase’s birth allowed me to be a “stay at home mom” for all of my children.  Chase has experienced loving and highly effective educational support that has brought friends and families together.  The experiences Chase brings to our family, just as what each family member offers, define us.  I have always wished for my children to be happy and healthy.  And through our combined experiences, I believe this ideal is achieved.”

What Helped:

  • This family’s beautiful perspective on caring for a special needs child.
  • The book, Expecting Adam: A True Story of Birth, Rebirth and Everyday Magic, by Martha Beck.
  • ABA therapy and a good school environment.
  • Teachers who were like angels to this family.

Scripture Verse:

1 John 4:11-12. Beloved, since God so loved us, we also ought to love one another.  No one has ever seen God; if we love one another, God lives in us, and his love is perfected in us.

Prayer

Heavenly Father, help us to remember we are all your children regardless of our differences. You love all of us equally. Help us to embrace our differences and live together with love and gratitude every day.

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