I am a special parent. This means that my son, Joshua, has special needs.
He was born on September 10, 1993. He has curly red hair, brown eyes and a passion for music. He loves to hear me sing and adores his father.
He has epilepsy, cerebral palsy, a severe hearing loss and a clubfoot (corrected with surgery). He also has a gastrotomy tube for feeding, and a tracheotomy. His brain injury was caused by a knot in his umbilical cord that resulted in a lack of oxygen at birth. He does not walk or talk, but he still has the best smile and laugh in the world.
Caring for him sounds like a lot of work -- and it is. Some days during his first year and a half seemed overwhelming. But he is good-natured, and that makes a difference. My experiences with Joshua have taught me a lot, and I would like to share some wise words with other parents of special children. I hope they help.
Take it one day at a time. We can only live one day at a time.
Keep the faith. Pray a lot.
Cry when you need, as often as you need. Release your feelings. Talk to someone. Friends, family, support groups and psychologists all help. Talking to a family counselor has opened the communication channels between my husband James and me. We talk much more freely these days.
Don't be discouraged. Doctors don't know everything. Wonderful things still happen. Read these words often.
Get enough sleep. It is essential to your emotional harmony.
Pamper yourself. Treat yourself like someone special. "Take care of that baby," people have said to me. "What about me?" I ask them. Do not get so caught up in caring for your child that you neglect your inner self. Go for a walk. Read a book. Start a craft. Play the guitar or dance. Enjoy all the things that make you a special person.
Forget the housework. Care for and enjoy your child now. The housework can wait.
Remember that the present is precious. Deal with problems as they arise and don't worry about any possible future problems. Don't get caught up in "what if." We can only live with today. Love your child today.
Follow your intuition. Most times, parents do know best. After all, you know your child better than anyone else. Listen to your inner voice.
Keep your sense of humor and your perspective. James and I say that it's not always easy having a special child, but we love using handicapped parking spots!
Take time to be alone with your spouse. Keep your marriage alive and strong and you can triumph over anything.
Keep up-to-date medical records, including evaluations, medication lists and phone numbers of key medical and support personnel. Always take this information along when your child goes into the hospital.
Ask everyone lots of questions. Do not be intimidated. This is your child, and you have a right to ask, and to know what is happening.
Do not compare your child with other children. Every child is special. If your child progresses at a different rate from another, so what? Everything your child accomplishes is wonderful and special, because it takes more effort for him or her than for a child with no disabilities.
Do not feel guilty or ashamed. Tell people you have a child with special needs. Be tolerant and open to questions. Help people to understand disabilities.
Get to know your child. Learn to see past the disabilities.
Give yourself credit.
Always hope for the best. Look for the positive.
Never give up. Your child will progress to his or her highest skills as long as you are there to stimulate, give encouragement and love.
Don't be intimidated by therapists. Their task is to give you suggestions, so talk with them. Tell them how you are feeling and what your strengths and limitations are. Do what you can each day, and appreciate what you accomplished. Don't feel guilty about what you didn't.
Some days, just do the minimum. You may be exhausted, or stressed -- so do the minimum and nothing else. When I am emotionally drained, all I can do is take care of Joshua. I've learned that's okay. You do not have to be "Superparent." You are human.
Gain strength from your child's inner strength. My son Joshua is a fighter. He wouldn't have survived this long if he wasn't. He is a strong child, and we aren't giving up.
Treat your child the way you would want to be treated yourself. Then you will know you have done your best.
Be glad you have a child. Be glad for what you have.
Savor the special moments. A bond is created that cannot be broken and will only grow stronger with time.
Be patient and gentle with your child. Your child did not ask to have a disability. Don't take your frustrations out on him or her.
Notice the beauty in the world, and share it with your child. Don't get so caught up in caregiving that you forget everything else. Be aware of the peace that can be found in seeing a glorious sunset, smelling a beautiful flower, or experiencing the coolness of a rain shower and the smile of a stranger.
Be happy. Accept that your life will be different, but no less wonderful than anyone else's life. Life is a journey and an adventure, not a destination. It is what you make it. Learn to view your child's problems as obstacles to be overcome, and his or her life as an obstacle course you will help your child run.
We have a lifetime of Joshua ahead of us. He is a very happy boy who makes progress each day. Life will not always be easy, but it will never be boring. We are on an adventure with him, which is a pretty good place to be.
I am content. I am happy. I am a special parent.
