If you have never experienced the birth of a baby that had complications at birth, it is hard to put yourself in this situation. I had such an experience, except we did not know what was wrong for months.
I had a friend who just had a baby with complications requiring surgery on the baby soon after birth. His life will be fragile. What can you say in such a circumstance? How should you react?
In this article, there will be some suggestions for what you can do, but also 6ps for families who need to raise a special child.
There are many comforting passages in the Scriptures that teach us how unique we all are. No one passage answers all the questions that parents might have at such a delicate time. But I will use several that might help you see how special each of us is to God. We are not “a fetus, issue, or some blob that will not become a person.” There is no doubt that a baby is being formed in the womb, not an animal or some inanimate object.
Jeremiah 1:5 – God says He knew him before he was formed in the womb.
Psalms 22:9; Psalms 139:13; Isaiah 44:2, 24 – “…I formed you from the womb…”
God knows each of us before birth. He has intimate knowledge of us. He created us. He loves us. Christ died for all of us, no matter if we are perfectly formed or need more compassionate care. “He cares for us.” Jesus loved the little children, and on the Mount, when he was teaching the Beatitudes, Jesus called the little children to come to Him.
Christians know that any person was worth Christ’s death on the cross. Let’s cherish those special children that are in our care.
The second part of this article will give you thirteen suggestions to make life work for families who are questioning, “Why me? Why my child?” Many have asked that question for various reasons through the centuries.
Caring for a child with special needs requires patience, understanding, and a lot of love. The term “special child” can encompass a range of conditions, from physical disabilities to developmental or intellectual challenges. Here are some general helps…
- Educate Yourself: Learn as much as you can about your child’s specific condition. The more you know, the better equipped you’ll be to provide the best care and advocate for your child’s needs. You do not know everything, but you will know more than anyone else when you spend 24/7 with them. Believe in yourself.
- Early Intervention is Key: Early detection and intervention can make a big difference in the lives of children with special needs. Seek out therapies and interventions that can help. Decades ago, medical doctors said you could do nothing until you were school-age. That was FALSE. Now is the time.
- Create a Routine: Children with special needs often thrive in structured environments. Establishing and maintaining a routine can help them feel secure and understand what to expect. Of all the people who can live without structure, these children need it most. They thrive when they have some understanding of what will happen next. They need the assurance of consistency.
- Stay Organized: Keep records of medical visits, medications, therapies, and educational assessments. Having this information readily available can be useful. Of all people, these children will have many appointments and meetings, and the more organized you are, the less stressed you will be. I am not naturally organized, so this would have helped.
- Celebrate Small Achievements: Every small step is a milestone. Celebrate your child’s achievements, no matter how minor they may seem. When our son was little and could not even sit alone, we carved a niche out of a wooden dowel rod. This allowed a wooden ring to sit on top until he could take his tiny hand and bump it, so it rang the bell. We cheered as though it was the greatest achievement. We continued that even with our other children.
- Find Support: Connect with other parents or caregivers of children with similar conditions. This can offer emotional support, exchange of information, and even respite care opportunities. You will learn more by getting to know other families who have been where you are and walked in your shoes. You are not the first, the last, or the only one who needs to know you are experiencing what you are going through.
- Communication: Establish strong communication with your child, therapists, educators, and others involved in their care. This ensures everyone is on the same page regarding the child’s needs. One of my biggest goals is to help parents learn to STAND UP, SPEAK UP, and become empowered to speak up for their children.
- Advocate for Your Child: Be prepared to advocate for your child in various settings, such as schools or healthcare facilities, to ensure they get the appropriate services and accommodations. If you will not speak up for your child, who will? Why should others work to get what your child needs if you will not stand up for them? Come on, get ready to fight the battles your child needs.
- Self-Care: Taking care of a special child can be exhausting. Remember to take time for yourself. It’s okay to seek help when needed. There needs to be more emphasis on helping parents realize that what they are doing is extra special. It takes more effort than children without needing all the extra care. You are more likely to ignore your own health until you are sick, experience burnout, or even worse. That can be helped if you are aware of your own needs and take time to let your body relax and refresh.
- Create an Inclusive Environment: Make sure your child has opportunities to interact with their peers, both with and without special needs. This can boost their self-esteem and help them develop social skills. Find children who are a little younger than your child and might be going through some of the same challenges your child is experiencing. They might be the best teachers your child will have. They are doing what your child needs to imitate. Include as many ages as possible. You and your child need the love and companionship of others in a loving way. NOW! 80% of these special families will never go to any church! Why are we not reaching out to help them? They are loved! Show it!
- Set Realistic Goals: It’s essential to have hopes and dreams for your child, but set achievable goals. This way, you can celebrate their successes without being overwhelmed by challenges. It will not be realistic for you to decide your child will catch up in a short time, what they have been unable to do so far. Learn what steps are needed for your child to succeed. Ignore those things that are not realistic and help in ways that lead to success! Help find those gifts and celebrate them!
- Equip Your Home: Depending on the child’s needs, you might need home modifications. This could range from installing grab bars in the bathroom to creating sensory-friendly spaces. If your house is cluttered and you need to allow room for crawling, using a walker, wheelchair, or whatever, what is most important? Try new ways to help them learn how to walk – even if you need bars in the hallways. I tried to help my son with cables and harness on the clothesline. I remade the tricycle to help him learn to ride it, to get the walking motions in action.
- Stay Positive: While it’s essential to acknowledge the challenges, maintaining a positive outlook can help both you and your child face these challenges with resilience and determination. NEVER, NEVER GIVE UP! Your child needs you to keep trying new things to see if there is something they can do that makes them happy. Our son was taught to paint, and he sold every painting he finished. His art was in a museum, and people who had not seen him in 17 years came to see what he did. He sold 40 paintings in one month. Who knew? It was tried to stretch his muscles in occupational therapy.
- Provide Choices: Whenever possible, allow your child to make choices. This empowers them and gives them a sense of control. When they are little, they make the choices between two things. When our son was little and could barely make “noises” for words, our speech therapist told us to make him say a whole sentence for his chocolate milk! I thought they were crazy! It would take coaxing him for 20 minutes to get out four words. But…he learned he would not get it until he did! Even if the words were not understandable, it helped him learn to say things and know we waited for him to do them. A physical therapist told us at the beginning to never have more than three toys. They get overwhelmed. That is why they would resort to boxes or lids! If you have Fisher-Price toys, they are good for decades. They usually teach something. Be selective and ensure they will not get hurt by the toys, but do not overwhelm them. This will save you money!
- Use Assistive Technologies: Depending on the condition, numerous assistive tools and technologies are available, from communication devices to mobility aids. Many tools keep being invented to help our kids. Some are being designed in other countries that I wish were here. However, ask Google what helps them develop certain skills. Some for speech, hearing, learning language, or some skill they need to develop. There are more tools than anyone even knows about. Research what your child can’t do to see if there is some way they can be taught.
- Stay Close to God and the Church: God’s people will help you through the tough times. Learn to trust them. Ask for help when you need it. Suggest ways they can serve others in the community that you get to know. This can be one of the greatest evangelism tools for helping those hurting. Let them know when you struggle. Tell them specific ways they can help. Asking for help is not enough. Be clear about what you need so they can decide if you need it. You do not want just anyone at your house because they may be in your way if they do not know what you are asking.
- Never give up on God: When things first happen, many start asking the question, “Why me, Lord?” It seems that this is a question that can take you into a pit. It does not matter why some things happen. What matters is what kind of person you will become because you are going through a problem. Will you be stuck, become negative, and have such a depressing attitude that no one wants to be around you? Or…will you become someone that others can see your faith in God is seeing you through these struggles? Will you become stronger and learn how to solve problems? Will you let resilience become part of your future? You need grit! You need to become stronger and know that God will help you through all your problems. It is your choice.
- Show gratitude! God asks us to be thankful for everything! How can you be grateful in the circumstances? It does not matter if you see how in the beginning. Just thank God for everything. Things you learn from your experiences…things that are not worse…that you have support…that He is with you…you can and are learning how to deal with all the care your child needs…anything…and everything.
I hope that these eighteen ways can give you a jumping-off point. God is with us, and He knows when you are hurting. We can struggle for a bit, be sad, and cry tears, but we’ll see how He will help us through the toughest parts of life. God truly cares for you, for me, and for each of our precious children.
If you need more help, please do not hesitate to contact me. If you’d like to connect with me, go to https://cgparen6ngspecialneedschildren.now.site/home and let me know what you need. I coach families and teach courses to help families become stronger. I have a course about to launch called “Stand UP! Speak UP! Empowering parents to advocate for their special needs children anywhere any6me.” I am here for you! Cherylhelpsme@gmail.com
Cheryl Ginnings 580-583-6289
