The other day, I was reading a People Magazine article about actress Julia Louis-Dreyfus and her battle with breast cancer. Fortunately, she’s in recovery and getting back to her normal life.
But what struck me most about her article were these comments: “I can’t say it’s a club I ever really wanted to be a part of, but now that I am part of it, I’m delighted to help those who need help…That’s a huge silver lining to all of this horribleness.”
As I put the magazine away, I thought of other celebrities, family members and friends who have dealt with serious illnesses like prostate cancer and Alzheimer’s disease. Then, I thought about people like you and me: parents of children with special needs.
That’s when I realized something profound. We all belong to “clubs” that none of us asked to join. Whether we like it or not, all special needs parents have a lifetime membership!
So, as a veteran of The Special Needs Parent Club, welcome to our new members—the parents of newly diagnosed children. In the spirit of Julia’s commitment to helping others, here’s some advice to help you adjust to club membership.
1. Remember, you’re not the only one
Keep in mind, you are not alone, even though it can feel like you’re the only one in the world dealing with a child’s disability.
April is Autism Awareness Month, and hundreds of autism organizations, local businesses and thousands of people and parents like us will bring much-needed attention to the key issues and topics surrounding autism, as well as the plight of the millions of children and adults it affects. Prominent national landmarks will light up in blue, autism events will be held throughout the country, and major fundraising campaigns will be conducted to raise money for increased research.
It’s a perfect time to get involved. Participate in a local autism walk or event and network with other parents. If you can’t make it, there are also many national and local autism organizations you can join, which can provide you with information and resources.
2. Give yourself permission to feel and heal
When a diagnosis of autism is confirmed, it’s like a hurricane centered on the child. There is a huge amount of activity, and everything is swept away—only the focus on the child remains.
Obviously, a youngster with special needs deserves special attention. But this immediate focus often becomes permanent; nobody thinks of anyone or anything else, now or in the long term.
Most of the time, parents are offered plenty of support and resources for their child, but none for themselves. Instead, they are expected to process and accept what is happening immediately and to “stay strong” for their son or daughter. Few people ever seem to realize that parents in this situation have special needs too.
Accepting your child has a disability isn’t easy. Parents experience a roller coaster of emotions such as denial, anger, and hopelessness. You may feel sad or guilty at times.
Remind yourself that these thoughts and feelings are perfectly normal and are to be expected, given your new situation. Know it’s okay to have them every now and then. This doesn’t make you a bad person or bad parent—it just means you’re human.
Loving your son or daughter and doing the best for him/her makes you a good parent, whether your child has a condition or not. Continuing to do your best in difficult circumstances makes you both a good parent and a good person.
If you find that you’re constantly plagued by worries, stress or negative thoughts, you might find it helpful to express your feelings. There are several ways, including writing in a journal, talking to a good friend or trained professional or joining a parent support group.
3. You’re allowed to take your time
Adjusting to a new life that you didn’t plan for or anticipate is tough. You weren’t intending on having a child with special needs. Nobody does. It’s not your fault. You did nothing wrong. There’s nothing to be ashamed about.
It’s important to take as long as you need to process everything, whether it’s days, months or years. There’s no set timetable for healing and acceptance.
4. Make sure to separate the diagnosis from the child
Raising a child with a disability does alter your life. However, it shouldn’t change the love you have for your son or daughter and the strong bond that naturally develops over time.
If you only look at the behaviors and challenges, you’re allowing your child’s diagnosis to be the focus of your relationship. The positive alternative is accepting your child for who he/she is, understanding that they cannot be blamed for their condition and viewing the disability as just another aspect of your lives together.
Don’t let your child’s diagnosis stop you from seeing the person behind the disability and loving him/her unconditionally.
And instead of focusing on what your child can not do, think about what they can do. Look for the special qualities and the little things that bring them comfort or happiness.
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5. Don’t isolate yourself
Special needs parents often feel lonely in their journey. But it’s important to remember you don’t have to be alone. You have family and friends who care about you. Their support can help you make it through the hard days, aid you in making good decisions, and provide the physical and emotional breaks we all need now and then. Don’t shut these people out of your life, and don’t shut yourself in.
Be sure you spend time with people who make you feel at ease. If certain friends or family members make you uncomfortable by staring, making remarks or over-reacting to your child’s behavior, don’t associate with them. Maintain positive relationships with those who understand your child’s condition and support your family.
6. Seek help when you need it
There will be times when all the challenges and stress get on top of you, and you just need an extra pair of hands to help you through. There’s no shame in asking for and accepting help from family and friends. Contrary to popular belief, it’s not a sign of weakness. It’s actually a sign of strength and courage to share your needs with others.
So call your sister and ask her to watch your child for a few hours so you can have some “personal time.” And your best friend won’t mind picking up some groceries from the supermarket for you.
7. Don’t place yourself on the backburner
With most of your attention and time focused on your child, it’s easy to forget about your own needs. But it’s important to take care of yourself. After all, if you don’t, who will? Try to get at least six hours of sleep a night, eat properly and exercise.
8. Remember no one has a perfect life
There’s no getting around this. Your child’s condition has changed your life. But nobody gets the life they expected. Everybody, with or without a special needs child in their lives, ends up in a place they didn’t expect and doing things they never thought they would.
The trick is to do the best with the life you have. With the right perspective and a good support system, you will have a good life, and so will your whole family.
Membership has wonderful benefits
Even though my husband and I reluctantly joined The Special Needs Parent Club, we were pleasantly surprised by what we found. There were amazing parents who welcomed us, from sharing advice on handling a child’s meltdown or to simply lending a sympathetic ear. And we were happy to learn that the club has a variety of members. We met pediatricians, teachers, therapists and other professionals who wanted to partner with and help parents give their child the best life possible.
Like you, we’re members for life. I hope that, like us, you will become all the stronger for embracing that membership.
This article was featured in Issue 87 – Building ASD Awareness and Communication