We know first hand many of the heart-wrenching feelings and challenges that parents of a special-needs child have. We also know of the love and devotion required in parenting such a child, and of the blessings that come. We know because we have one. Through the years we have learned many things that may help others. Our daughter is now a mature adult woman, and even though she still faces many challenges, she is quite remarkable in spite of her mental and physical disabilities.
She was two-months old when we first saw her in a community hospital in Stuttgart, Germany. Prayer had led us to this moment. We were there to decide whether or not we would adopt her. As we held her in our arms, this expressionless little baby looked blankly into our faces. As we whispered consoling words to her, a tiny, brief smile appeared, only for an instant, but it was enough to confirm to us that she should be our child.
The law would not allow us to take her home until she was three months old. So, for three months from the day she was born she lay in a hospital crib without any parental love—a terrible deprivation for any child. We could tell when we first saw her that she was void of personality, with tear streaks running from each eye into her ears. She most likely spent a good share of her waking hours lying on her back, crying. It broke our hearts to leave her there. We didn’t know she had any disabilities then. We thought all she needed was loving parents and she would be a normal happy baby.
With our love and the companionship of two young siblings, she was happy, but we could see as she grew that her development was not normal. It soon became apparent that we had a special-needs child. And the weight of it was at times overwhelming. The comfort came as we remembered how God had guided us to her and that she was meant to be our child, as though she had been born to us, made lasting through a temple sealing. With His help, we knew that we would somehow be able to do this.
Sometimes the news that your child has serious problems is evident right at birth. Other times it comes later, as the child develops. Either way it can cause a frightening flood of fear and feelings of inadequacy for the parents of the child.
We hope our experience and those of others parents will help you in counseling your own grown child who faces the overwhelming responsibilities attached to parenting a special-needs child. We cannot possibly address all issues, since every case and every disability, is different. Still there are certain things that apply to most.
Never under estimate the importance of your input and encouragement to your child facing these challenges. It will mean more than you’ll ever know. So now we begin.
1. The most important thing you can give your child is your love.
Don’t be afraid to hold this precious little soul in your arms, put your cheek against hers and whisper words of love and encouragement, no matter the disability. Your baby will feel your love and will grow to recognize you and respond to your tenderness. All babies need this kind of love and the bonding it creates with their parents. It helps them grow in confidence that you will always do what is in their best interest. That trust will be invaluable as they grow and are pushed to do harder things.
As your parents, we will love your child, too, and consider it a great blessing to be her or his grandparents. Call on us when you need us. Let us give you a break from time to time. We’ll enjoy the opportunity of becoming closer to your precious child.
2. Don’t Blame Yourself
Several years ago Elder Boyd K. Packer reminded us that there is no room for guilt. He said, “I must first, and with emphasis, clarify this point: It is natural for parents with handicapped children to ask themselves, ‘What did we do wrong?’ The idea that all suffering is somehow the direct result of sin has been taught since ancient times. It is false doctrine. That notion was even accepted by some of the early disciples until the Lord corrected them.
“‘As Jesus passed by, he saw a man which was blind from his birth. And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.’ (John 9:1–3.)
“There is little room for feelings of guilt in connection with handicaps. Some handicaps may result from carelessness or abuse, and some through addiction of parents. But most of them do not. Afflictions come to the innocent.” (“The Moving of the Water”, Ensign, 1991 May)
3. Seek medical and professional help early
It is very important to know as early as possible that a child has developmental or physical problems. If the child is not developing properly, it is extremely important to have that child helped by medical professionals and community agencies. The earlier these children receive help, the better their chances of leading healthy and productive lives.
Your best source is your pediatrician. Tell him or her about any concerns you have regarding your child’s development. These doctors are trained to help determine whether young children have special needs. They are also required by law to refer children with suspected special needs to the service system for children with disabilities and other special needs that exists in their city or county.
If you are concerned, follow your intuition. Some doctors may say that he’s just slow and will catch up. If you know it’s more than that, find another doctor who will believe you and do more testing.
4. Find support groups for parents of special-needs children
It’s a lonely path when you try to walk it alone. There are many other parents who are going through what you are experiencing. They can help you.
An online organization offering one-on-one help to parents of disabled children is called Daily Strength, at https://www.dailystrength.org/support?groups. Another one offering help is located at: https://www.comeunity.com/disability/speclists.html. For more specific support groups in your area call your state or county Division of Family Services or Division of Services for People with Disabilities, or ask your doctor. Also, many schools offer support programs networking opportunities for parents of special-needs children.
Michele Novotni, Ph.D, told of her frustration in dealing with her son Jarryd, “He has what I call ADRRRHD—Attention Deficit Really, Really, Really Hyperactivity Disorder. Other parents could tell their children to go and play quietly—and they would! I, on the other hand, always had to keep a close eye on Jarryd for fear that he would swing from the chandelier if I turned my back.
” She needed to find other mothers with kids like hers. She said, “I found what I was looking for in my local Children and Adults with Attention Deficit/Hyperactivity Disorder (CHADD) parent support group. I remember tears rolling down my cheeks as I listened to a mom speak about her son’s adventures on their roof. I wasn’t alone!
“In the years since that first meeting, I’ve attended dozens of other events with parents of attention deficit disorder (ADD ADHD) children. These gatherings have given me some of the best ideas and strategies I’ve found to manage my child’s behaviors. Most importantly, they’ve been an invaluable source of support through the ups and downs of parenting an ADRRRHD child.” (https://www.additudemag.com/adhd/article/2535.html)
Michelle Langham, a mother of two adopted special needs children said, “You will go through the mourning process whether you adopt or give birth– anger, denial, guilt, etc.– and this is very normal. Find a group of parents with children who have special needs, it just helps to know you aren’t the only one who is feeling the way you are and going through the things you are.”
5. Treat your disabled child as normal as possible.
Give your child every opportunity to live as normal a life as you can. If they have a desire to learn a certain skill, find a way to at least give it a good try.
A mother told of her mentally challenged and slightly palsied daughter’s desire to play the violin. The mother knew it wasn’t even remotely possible and would end in frustration for the child, and everyone else. So she showed her daughter a ukelele and asked if she would enjoy learning to play that instead. Her response was a happy “Yes!”
The parents found a college student willing to teach their daughter, knowing that it would be a slow and trying process. Their daughter finally mastered one chord, and no matter how hard she tried she could not make the fingers on her left hand do more, but she was very proficient at strumming with her right hand. The teacher found a song she could sing and play with that one chord. For the next several months the house rocked with “Old McDonald Had a Farm” every day after school. It drove the whole family crazy, but the girl was having a blast. Then one day the daughter fell on the ukelele and broke it in half. She looked at and said, “Oh, well, I guess that’s done with.” She never asked for another, and no one suggested it. She was content because she had her moment of success with a stringed instrument that slightly resembled a violin, and she was happy.
You will be amazed at the possibilities that emerge and the success special needs children can experience as they grow and develop. Be creative and give yours every opportunity possible. Even some of the most severely disabled children surprise their parents with their abilities, once they are given the chance and encouragement. One of the most astounding examples of this is on this video titled, “Pilot flys without arms”
No matter how limited your child may be, or how long it takes to learn a skill, praise her or him and rejoice over even the smallest accomplishments. It will put a smile on the child’s face and yours. Praise is magical for inspiring a child to try harder and do more.
6. Be your child’s strongest advocate.
You will have to make many things happen for your child because others will be inclined to think “He can’t do it.” They don’t know your child like you do, nor do they love your child as you do. You know that the possibilities for your child are only limited by the opportunities given. So open the door to as many opportunities as you can, without overloading your own life beyond your capacity. Focusing on abilities instead of disabilities works.
Many parents have been told that their child could not participate in a sports event, an art project, a school chorus, be mainstreamed into a class, etc. Determined parents meet with teachers at school and church and help them understand what their child can do, and offer assistance to make it happen. A parent needs to attend a class when their child is absent and talk to the children about their child’s disability. Get them on the bandwagon of support. Children are much kinder and more inclusive when they have an understanding of the situation. It is mostly when they don’t understand that they are unkind.
If your child can’t play on a team he may be able to participate in other ways. For example, Matt, who has Down syndrome, is a freshman at Benton High School in St. Joseph, Mo. Despite his disability he suits up for every football game and cheers on his teammates from the sidelines. Then one day a remarkable thing happened. See this short video that tells the story.
Another mother in the trenches said, “Don’t compare your child to others. . . . See your child as Heavenly Father does, as a child not as a disability. There will be mean people who will say things that may hurt. They don’t understand and often times think they are helping. Just taking the time to calmly explain why your child acts the way they do will educate the person and may prevent another parent from going through the same thing.”
7. Let your whole family be blessed by your disabled child.
There will be challenges for your child’s siblings. Elizabeth Johnson makes this point: “For quite a few years, people would ask our girls, ‘why is your brother so weird?’ You can imagine how they felt. They felt love and loyalty towards their brother, but embarrassed at the same time. As time went on, people began to just accept that that’s the way our son is. From the time we found out our son has Autism, we have been learning how to have even greater patience, how to just let things go, and how to pick our battles. This has given us new knowledge that we have been able to share with others, as they ask. I wouldn’t change our son for the world!”
Year ago the First Presidency made this statement regarding those with disabilities: “‘As I have loved you . . . love one another,’ the Savior taught (John 13:34). During His ministry, the Savior showed great compassion for people with disabilities. As His disciples, it is our opportunity and our responsibility to follow the example of Jesus in loving . . . those with disabilities” (First Presidency statement, Church News, Apr. 29, 1989, 7). As we do so, we can be a healing influence, offering hope, understanding, and light, as Jesus did.
The entire family can be blessed as they learn to love, serve, and include your special needs child.
To see an example of this, watch this short video that shows a Christian family with two disabled children, and how this family finds joy in following Christ’s example. https://www.youtube.com/watch?v=IHIHBKYPrVY
The Church has given counsel and direction that can be found on the LDS Disability Resources In part, it reads: “You may struggle at times with painful emotions as you try to understand the disability of your child and your role as a parent.
Having a child with unique needs, however, can be the beginning of a journey that leads to great spiritual blessings. There can be great joy in that journey as you draw close to Heavenly Father and allow His Spirit to comfort and instruct you. Trust that God will make you equal to the challenge and will bless you with insight and understanding in making decisions regarding the welfare of your child.”
This site offers
· Helps for Fathers of Children with Disabilities
· Helps for Mothers of Children with Disabilities
· Helping Children Understand Their Siblings with Disabilities
· Helping Grandparents of Children with Disabilities
Family members can learn incredibly important lessons in serving and defending a sibling with special needs. An elementary school principal said, “Growing up with a special needs sister taught me more than anything how to understand and care about the special needs children in my school.” Nothing teaches like every-day-hands-on experience.
Along with caring for our special needs child the Church counsels: “Do not ignore the needs of other children in the family. Do not allow the disability to become the focus of all family activities. Do some things that are special to the child with the disability, but do other activities that meet the needs of other children. Where possible, do things that include all family members.”
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