If you are a parent of a child with special needs, you undoubtedly have bigger challenges to overcome than you ever thought possible. There may be days where you feel all alone in your struggle. Maybe you've been so busy taking care of your child's needs, in addition to the rest of your family, that you have not had the opportunity to seek encouragement from those who have trekked a similar road. Whether you're raising a child with various physical, developmental or emotional challenges, we hope you'll find comfort in this collection of stories from parents who are living the joys and trials of raising special-needs children.
Amid these stories from other parents, you'll find tips and tools in the areas of schooling, church, balancing the needs of your disabled child and the needs of your other children, coping when your circumstances have become too hard and encouragement in developing friendships.
Likely your days are filled with appointments, therapies and other responsibilities necessary for the care of your children. Perhaps you're also working through circumstances that seek to overwhelm you. If you'd find it beneficial to speak with one of our licensed counselors, don't hesitate to call us at 1-800-A-FAMILY (232-6459).
And sometimes, all you need is to bounce ideas off of another parent — maybe one who's been down a similar path. Connecting with others who can relate to your journey can offer long-lasting friendship and fellowship. Consider sharing your story with others and us. Visit our online parenting community and join the discussion.
Note: The articles in this series are not meant to replace the advice of medical professionals or licensed counselors.
My daughter, Chloe, is amazingly verbal, emotionally sensitive and quite a beauty. She knows what she wants, which is, of course, to be a princess ballerina pony rider who is a doctor for babies and animals. She is the quintessential 4, and I am overjoyed.
Chloe was born with a clubfoot and other complications. In these first four years, she has already had six operations and has worn casts, braces and special shoes attached to a bar worn at night. She has been in and out of hospitals, had multiple blood draws, echocardiograms, a barium enema and is in ongoing physical therapy. She has also experienced severe pain.
My husband, Dane, and I wanted a baby. We were excited to welcome into our lives another person to love. During pregnancy, I imagined the birth and life of our child. She would play soccer like her dad and dance like me. She would be perfect.
I still remember those quiet moments before the worry and the tears, that dream state of perfect fingers, coos and smiles and, of course, perfect toes. Just ten perfect fingers and ten perfect toes.
But what happens when things don't turn out perfectly? Hope fades, expectations are dashed; the future quickly becomes cloudy as fear sets in, and we ask, Where is God?
We were told at my 5-month ultrasound that Chloe would most likely be born with a clubfoot, a heart defect and a chromosomal abnormality. "Down syndrome," my doctor said, "or most likely Trisomy 13 syndrome, in which case most babies are born dead." The doctor shuttled us to the genetic counselor who stated, "You can interrupt this pregnancy today, and no one would blame you."
Where are You, God? I pleaded.
Chloe arrived in April with beautiful fingers, expressive blue eyes and a clubfoot. So neatly were our daughter's feet curled up together, one wrapped around the other — so beautiful and so tiny. One foot perfectly like mine, the other scarcely resembling a foot at all. Seven toenails were missing, the remaining three mere pinheads on deformed toes.
At first as I thought of her future, I hurt for Chloe — for being 8 and not running as fast as the other children, for being 12 and feeling ashamed of her feet, for being 16 and never wearing sandals, for being 25 and coming to terms with her body. I hurt for my daughter.
Then I began to see that through the whole ordeal — the ultrasounds, the amniocentesis, the possible heart defect, the chromosomal abnormalities — this baby, this beautiful daughter, was indeed made for me. God gave me the strength to tell the genetic counselor that I would not end her life. God granted me the wisdom to continue to research and ask tough questions. God gave me the courage to view her future in a positive light. God gave Chloe to Dane and me because He knew she would change our hearts, just by being born. God was with us the entire time, waiting for us to see that He is in control.
Even now, as Chloe twirls through ballet class, one foot trying so hard to tiptoe, I hear God saying, I am here. And I am blessed.
As parents, we know how special our children are to us, but have you told your kids they are uniquely and wonderfully created? I enjoy seeing my children's smiles when I describe how God made each of them with the exact color of eyes, the right texture of hair and the precise shape of nose. We look at our fingers and talk about how the patterns on each one belong only to us. We marvel that there never has been and never will be other humans just like us.
God also gives each child specific skills and talents. Because people are designed for His purposes (Ephesians 2:10), the very things they like to do and are good at doing were designed by God. Reassuring children of their distinctiveness helps them to see that it is OK to be different. When we tell our children that God created them for specific jobs, they can feel secure knowing they are part of God's plan.
Jeremiah was told that God knew him before he was even formed. Psalm 139 talks about how each person is woven and knit in his mother's womb. God does not create mistakes. Our children need to know they are on this earth because God wants them here. They are important, and He loves them.
Being uniquely and wonderfully made is a gift. Help your children see how truly special they are to their Creator.
The birth of a baby brings lots of emotion — most would assume emotions of happiness, excitement, amazement and joy.
But when your baby is born with a physical or mental disability — whether previously diagnosed or not — emotions often turn to shock, sadness, anger, bewilderment or anxiety.
What do you do with the swell of emotion? How do you handle the news and still operate as a good parent of a newborn? How do you cope when your child is born with a disability?
Your baby is alive and you truly are thankful. Still, there are things that have died: dreams, expectations, hopes, wishes. Whether or not you have verbalized them, as a parent expecting a new child, you have them. And now those dreams are not to be. They are intangible deaths and are often hard to identify. Identify and verbalize them just the same.
Allow yourself to grieve as if there were a real death. While they can occur in any order, the stages of grief are:
Two opposing forces are active during this process:
The grieving process may take up to two years.
Times like these activate the "Why, God?" question. Go ahead; wrestle with that question. If need be, seek a mentor who's mature in the Christian faith. At some point you will need to rephrase your question from "Why?" to "What do You want me to do now?"
While you are the parent of this infant, you are also the child of a loving and understanding God. Make time to ask your heavenly Father to hold you and comfort you. If you can't take time for scheduled devotions, sneak a few minutes where you can and whisper, "God, hold me." Be still long enough to allow the Lord to minister to your hurt and tired heart.
Is the glass half empty … or half full? The truth is it's both. Recognize and admit the "half empty" part. Yes, your newborn may never get to ______ (finish the sentence as applicable). Grieve the dreams that have been lost.
You must also purposefully choose to focus your attention and energy on what he or she can do and what are attainable goals and dreams for this new family member. This is the "half full" part.
"Do what you can — not what you can't" is a life phrase that's easier to tell someone else than to live out. It's still true and the "half full" is what will soothe your weary soul. When you focus on what you can do, it keeps you in control. If all you focus on is what you don't have control over, you will feel out of control and will instill that feeling (knowingly or not) into your child as well.
This is not a cliché; it's a healthy way of life whether or not you have a child with a disability — but especially so.
Live in today is especially true as the parent of a child with disabilities. Today is the only place where the control that you legitimately have belongs. Today is the only place where you can interact with your child. Today is the only place where you can actually be alive.
Learn to relax. Children instinctively live in the present. Allow your child to help you enjoy the moment and to live it fully. Children are great at this — learn from him or her.
Life will settle into a normal routine. It may not have been the "normal" you envisioned but it will come. Be patient with your child, yourself, your spouse and the process, and you may find yourself laughing and enjoying life more than you ever remembered.
Our son Joey was almost 3, our daughter Kristina was a newborn, and my post-partum hormones were out of kilter. My husband, Joe, and I had just learned the extent of Joey's diagnosis and were feeling alone; I remember spending the better part of two weeks crying. I was saddened that he might never walk, talk, or be able to learn and longed for someone to listen, give hope and not give the "pat" answer that was easy to say but hard to hear.
Caring for our special needs son required a lot of time and effort, and I had to deal with Joey's illnesses, allergies (requiring hospital visits), seizures (that we didn't yet recognize as such), multiple therapies, trips downtown, never-ending questions and life with a toddler who couldn't walk or make his needs known.
Much of the time my husband and I felt alone. We were physically worn out, emotionally isolated and spiritually depleted. We had great help from Joey's grandparents, who loved him deeply and accepted him fully, but in other circles we often felt people didn't know what to do or say. Occasionally, people asked, "How's Joey?" but they seldom, if ever, asked what life was like for him or us.
We were rarely asked to others' homes. Joey was never asked to come to someone's home to play. He didn't fit in with others his age, and we sensed that kept us from being included in some social gatherings. We wondered whether others thought they'd have to "get involved" if they got too close to us. In fact, we remember only one time we were all invited to someone's house for visiting and dinner. We were so excited!
Joey could not tolerate noise and commotion. Very sensitive to sudden noises and movement, he would start screaming, hanging all over us and generally making going out not worth our effort, much less worth someone else's effort to invite us! We didn't blame others, and no one ever said we were excluded; but for whatever reason, we often felt left out. Joey's needs diminished our desire to go into those social settings, and when we did, we were often embarrassed about the way he acted, thinking others would consider us bad parents, unable to control our child. He couldn't help the behavior caused by brain malfunction, but we had difficulty separating his behavior from how we felt about it.
When Joey was young, we lacked the freedom to do some of the things our friends and their families did. Now that he is an adult, we still cannot simply pick up with our "empty nester" friends for dinner together or accept other impromptu invitations. We've never been able to go out unless we had someone we trusted to come and care for Joey. His care is different from what our girls ever needed. Sometimes we felt trapped. We didn't feel the freedom to talk about it either because we didn't want to hurt others' feelings. We didn't want others to feel obligated to invite us over or to include us, knowing we would likely have Joey with us.
If we could change one thing about how we handled the challenges with our son and our parents, we would have been more vocal. We would have expressed to others exactly what was happening to our loved ones and to us as we cared for them. As our friends had grandchildren with special needs and cared for their aging parents, we discovered that they were shocked to know we had gone through the same things they were going through. Some friends were good listeners, but in looking back, we can see that we tried not to overdo it and perhaps "underdid" it.
Others will not understand what we are going through unless we tell them. Even close friends are shocked that we still shower and shave Joey as a grown man, that he can't stay home alone, that he continues to have severe behavioral issues from time to time and that we still experience times of great frustration in trying to deal with him in a positive and Christ-honoring way. As a result, we realize we should express ourselves more clearly and thoroughly, and probably should reach out to ask for help and even continue to do so. And when others offer to help, we need to be honest and practical in allowing them the privilege.
Here are some of the ways we have reached out to develop relationships:
We want others to sense from us that we are willing to work together, not just have things our way. We want our participation in a relationship to be "life-giving," not "life-draining." In our desire to balance those fragile areas of relationships, we want to love like Jesus and not be indifferent to others. Sometimes that means protecting ourselves and our family, and other times it means giving above and beyond what we think we are able. In both instances we seek the Lord and depend upon Him for guidance and direction.
My 10-year-old brother Danny watched the boys at summer camp running, swimming and playing. Though only 5 myself, I knew how much he wanted to join them. We had come to visit our older brother, Leo, who had special needs. Leo still had a week of camp left, but he cried and begged to go home. Because the doctor had said camp would be good for him, our parents made him stay.
Camp wasn't good for Leo. Our parents still regret not taking him home and letting Danny take his place. They could never afford to send another child to camp. We had other siblings with special needs, and the camp episode was only the beginning of many years of our having to understand why my other siblings received extra attention.
If you have a special needs child with siblings, you undoubtedly face similar dilemmas. You try to love your children equally, but you can't possibly provide for them all in the same way. Some children simply need more of your time, energy and resources. Still, it's important to help your other children feel you love them as much as the ones who need you more.
Treat your special needs child as much like your other children as possible:
Marilyn's younger brother David was paralyzed from the waist down. Everything in the home revolved around him.
"If David didn't want to do something, he didn't have to. My mother wanted peace at any cost," Marilyn says.
Marilyn couldn't have her friends over for sleepovers because it might upset David. Her dad sold his business and the family moved in the middle of her sophomore year of high school, for David. David got everything, including their mother's attention.
"I felt like I was in the corner all the time. I wish my mother had taken time to give me some special attention, to do something just for me."
Still, Marilyn remembers one special evening with her dad. "He took me to an elementary school play and we ate dinner at a restaurant, which was a big thing for us. He bought me a Coke that I got to have all to myself. (Usually I had to share with David.) My Dad even opened the doors for me."
This "date" with her father stands out as one of Marilyn's best memories, which demonstrates the value of individual attention.
Psychologist and author Georgia Shaffer, who is the parent of a special needs child, says, "Having a child with special needs is extremely draining on the whole family. One of the problems is that these children know they are 'different' and the parents are working so hard to help the child with problems and fight for them that they have little time and energy to focus on the children who appear to be doing fine. The message that is inadvertently communicated to the latter is, 'Unless there is a problem you aren't all that important.' Intentionally set aside time alone to interact with each child in a way that means something to them. Even if it is only five minutes a day you are saying, 'You are special to me.' "
By giving special needs siblings some individual attention, you can help them understand the important place they hold in your heart and in the family.
The day my first child Michael was born, I was filled with anticipation. I had idealized this moment. It would look something like a Pampers commercial — Mom and baby happily gazing at each other, Dad looking on adoringly. Isn't that always how it goes? Not exactly.
Before I even heard, "It's a boy!" or had my first glimpse of him, I heard, "We have a cleft problem here." The baby we had long waited for was reduced to a deficit, a problem, a label.
A nurse held my little boy away from me and said, "It could be much worse." Wow! Not really what I wanted to hear. Worse than what?
This was the beginning of my learning curve. I knew what a cleft palate was — sort of — but what was it going to mean for my child? Would he be able to speak, hear, learn?
I was schooled quickly by specialists, surgeons and other care providers. What I wasn't told I had to find out on my own. Whether I realized it or not, I had just become a case manager and advocate for Michael. It was clear this job would require a tireless effort to seek and find answers so Michael could have the best possible outcome and reach his potential.
Michael's course was soon clear. He would have surgeries and extensive orthodontia. Hearing issues developed and speech therapy was necessary. Michael's face was open below his nose, and while we knew that surgeries and extensive orthodontia would be necessary, we were grateful because we could see at least some of the challenges before us.
While rocking Michael to sleep or carrying him in a harness around the house, I would think about my mom. I had been born with many "hidden" issues related to vision, speech, motor coordination, attention and hyperactivity, as well as learning disabilities. My mom and dad were armed with good intentions and committed to prayer, but there were no easy answers. Unsure of what to do, they just kept praying, asking questions and depending on doctors and teachers for help. At a time when no laws were in place to govern the referral, testing and placement of children with special needs, my story should not have had a happy ending. My parents, regardless of what they didn't know, refused to give up on me. I achieved the impossible, succeeding in school and obtaining my masters degree.
As I began sharing my personal testimony parents approached me for help. All I could offer was my perspective as an educator and share the path my mom took. When I became a mother, I understood so much more clearly the challenges associated with being the parent of a special needs child.
In my travels as a speaker I met so many parents trying to piece together a puzzle filled with unknowns. Learning disabilities can't be seen; neither can autism or ADHD — well, at least not immediately. All of the parts of the story have to come together to create a clear picture. Failures or difficulties accumulate and pretty soon everything adds up. There is a problem. That's when a parent says, "What do I do now?"
I asked myself the same thing. The good news is that once you acknowledge there is or might be a special need physically, behaviorally, academically or in other areas of functioning, you can start taking action — not random action or a reaction but thoughtful, intentional action to help your child.
So what steps you can take to provide the foundation for a proper diagnosis and to prepare the best possible treatment plan?
The 3- and 4-year-olds marched into "big church" with giggles and flushed faces. Parents strained to find their children as the young performers began their first, much-rehearsed song.
One couple craned their heads to the left and right searching for their son, knowing Caleb would likely be at the back with his head down. With developmental delays and autism, he was not about to seek out the stares of hundreds of adults. Not seeing Caleb on stage, his anxious father hurried to Caleb's classroom to see what was wrong. To his relief, Caleb was safe.
Although the father was glad his son was all right, he questioned why Caleb was left in the classroom while all the other children were performing. "I was just told to be here with him, because didn't need to participate," the volunteer explained.
Unfortunately, scenarios like this play out every Sunday in churches across America. Whether it's a lack of participation in an event or inclusion into the life of the church, both children and parents are hurt when excluded due to a special need. This exclusion is not usually intentional, but is more a lack of awareness. It is imperative that senior pastors and children's leaders recognize the needs and feelings of families affected by disability in their churches and communities.
As the parent of a child with special needs, there is much you can do to help. Here are a few tips to assist with the communication.
So, how did things finally end with Caleb? Shortly after his non-performance, a ministry to children with special needs was launched in that church, ensuring that all children would be welcomed and included. Unbeknownst to Caleb, he was the inspiration for that ministry. How do I know? Because I was that anxious father!