By Danielle Zimmerman
During my journey raising a daughter with special needs, I have had some self-revelations I’d like to share with other parents and professionals. Most of all, I want to let other families know they are not alone. Everything you are feeling and thinking is normal…. we all go through this at some point. Here are a few do’s and don’ts that helped me along the way.
*Remember a diagnosis doesn’t define your child. Don’t get wrapped up in the Internet facts and stories. Every child is different and will progress at his/her own pace. Focus on the ability not the disability.
*Write your own goals for your child’s progress. Remember to be realistic. Have a family meeting to discuss what accomplishments your child could make this year. Consult with therapists or teachers to help write and develop a plan of action. Goals may include language skills, movement and strength, socializing with others, emotional well-being, daily living skills, and nutrition. Create long-term and short-term goals, and see what steps you can divide into smaller steps. Consistency is key; everyone must help follow through with the goals at school, home, and therapy to ensure progress.
*Don’t be afraid to ask for help. You need a support system. Push for anything and everything: more services, programs, benefits, guidance, and family support. However, remember to be thankful and grateful for what you do get. There is a fine line between asking for more help and showing appreciation. You can’t hold it all in and try to do everything because that will lead to being resentful, bitter, and exhausted! You need a team. It takes a village to raise a family. Your village just might include doctors, therapists, teachers, state financial coordinators, spouse, siblings, babysitters, and grandparents.
*Acceptance. This topic is hard to hear, but allow yourself to go through the stages of grief to reach acceptance. You will go through denial, you will be angry and maybe even depressed at some point when you realize your child isn’t healthy. This is okay to admit, but try not to dwell. When you reach the point of accepting your child for who he/she is, the doors will open to being creative, proactive parents – living in the moment, but planning for a future, happier life. Don’t be shy to ask for professional help to guide you through this process.
*Don’t lose yourself in your child. Sometimes having a child with special needs consumes you like no other identity. You still need to be your own person, spouse, and friend. Finding balance is your peace of mind. You can easily forget who you really are, what you enjoy, and what makes you happy. Remember, you need to make time for all of your roles. Make time to be you; go to the spa, read a book, have dinner with your spouse, take a class, visit friends, or go on a vacation.
*Get Creative: As parents of children with special needs, we need to create the right environment, modify toys, make clothes, buy unusual products, and even print books to accommodate our children’s needs. You can search special needs websites for products and get ideas to either purchase or make yourself. Several of these products are made by parents for parents out of necessity. I have gone as far as sewing elbow pads for chair arms to avoid sore elbows and sewing pant legs together to avoid problems while sleeping. Think outside the box!
*Don’t forget your spouse: Recent studies found that 35% of all marriages end in divorce regardless of having a child with special needs. I know first-hand, having a child with special needs does add extra strain on a relationship. We must remain strong and put our relationship high on the priority list because, in my mind, these are the ones that must last! You need to lean on one other and be understanding emotionally, physically, and romantically. Make time to be romantic and feel sexy.
*Normalcy: We all need some normalcy in our crazy, unpredictable lives. Try to create routines that you would for any of your children and apply to your child with special needs. For example, include him/her in sports, extra-curricular activities, and family time around the dinner table. Include the whole family in games like hide-n-seek, pillow fights, Simon says, etc. There might be a few modifications to be made to include everyone, but with a little creativity, everyone in your family can play together!
Read more in the book, A Challenged Life: Raising a Child with Special Needs found on Amazon.com