BY DEANNA PICON
It’s the end of a long day and you’re sitting at the kitchen table writing your “To Do” list: 1) attend IEP meeting next week 2) call school speech therapist to discuss iPad communication apps 3) buy milk, eggs, stir fry vegetables and chicken at the supermarket 4) pick up clothes from the dry cleaners 5) pay cable and cell phone bills… and the list goes on and on, until you jot down the one that means the most: Get A Life. And you secretly smile and wishfully think about how wonderful that would be.
Taking care of all facets of a special needs child daily living – medical, personal, therapy, school – while managing work and family responsibilities is no easy task for even the most dedicated and organized parent. With all the pressures and obligations of raising a child with a disability, parents put themselves on the back burner more often than not, leaving them stressed out, anxious and frequently depressed. That’s a recipe for a downward spiral of stress, guilt and anxiety that can leave you less able to deal with life’s challenges, and more likely to feel hopeless about getting back in control. So it’s essential for parents to take care of themselves, both physically and emotionally. Your family needs you at your best as much as possible; you will not only be a more effective parent, but be happier and healthier in yourself and in your relationships.
With a new year just underway, it’s the perfect time to develop a new outlook and look at some realistic strategies to get your life back on track.
ONE
Be honest about Your feelings
Whether you’ve just received your child’s diagnosis or have been dealing with this journey for years, you’ll experience a roller coaster of emotions as you raise your special needs child.
For one, you didn’t plan to have a son or daughter with special needs. Nobody does.
You may feel sad, depressed, lonely, resentful or angry during periods of your life. There may be times when you secretly wish your child didn’t have a disability and could be like every other ‘normal’ kid you know.
The first thing to remember is that these thoughts are perfectly normal and it’s all right to have them every now and then. This doesn’t make you a horrible person or awful parent – it just means you’re human.
Taking on the huge responsibilities of a special needs child is not easy. You have to handle a host of issues and situations that parents of typically developing children don’t have to. So, be prepared to forgive yourself for being a mere human being and not a superhero.
You didn’t sign up for this life any more than your child did. You’re allowed to be upset about this. You’re allowed to have moments of anger, doubt and frustration. You are allowed to fail – as long as you keep trying, it’s okay.
Again, you’re human.
Loving your child and doing your best for him/her makes you a good mother or father, whether your child has special needs or not. Continuing to do your best in challenging circumstances makes you both a good parent and a good person.
If you find that you’re constantly plagued by negative thoughts, you may find it helpful to express your feelings. The longer you keep things bottled up, the higher the pressures go… and the worse it is when things fall apart. It’s much better to deal with things as they’re happening. There are a variety of ways to do that, such as writing in a journal or talking to a good friend or a trained, professional autism coach.
2
Know You’re Important
You have to make your needs and wellbeing a priority. This may be one of the toughest things you’ll ever have to do, because you feel like your child should be “Number 1” in your life. But you have to do it, not for yourself, but, in fact, for your child. Putting time toward your welfare now is like making an “investment” in your child’s future.
It’s essential to take care of yourself, especially with everything on your plate. Make time to eat properly, get at least six hours of sleep and exercise. You don’t have to join an expensive diet plan or pay for a gym membership to do this. There is an abundance of free resources and information on healthy eating on the Internet as well as numerous fitness apps that can help you.
In fact, one of the most beneficial, easiest and cost-effective forms of exercise is simple walking.
A 30-minute walk, three times a week, is not only excellent for your heart, but regular fresh air and exercise can also benefit your mental health. Go for a brisk walk around the neighborhood and bring along a friend for motivation and accountability.
Not only is it a great way to catch up with each other, but you’ll both be doing good things for your bodies. Hitting the gym is also an effective way to work off stress, clear your mind and stay fit.
You may also want to explore meditation or other relaxation techniques that will help keep your emotional balance.
3
Remember Who You Are
It’s very easy to allow an all-encompassing challenge like raising a child with special needs to define you. It can happen without you even realizing it.
Suddenly, you’re no longer “lover of country music and great pastry chef”, or “sales agent and talented handyman”… now, you’re just the parent of “that kid with the disability.” It’s important to remember that the person underneath that label is still you.
Like any parent, much of your life is going to be centered on your child or children from now on, but that doesn’t change your past. You still sold that software, sang along with Tim McGraw, built that deck and made all those cookies. Those things are real and permanent.
Today, you may have given up your job and have a lot less time to spend listening to the radio or organizing your tools in the garage, but you’re still the same person inside. If anything, you’re a stronger and better person for having stepped up to the challenges of life with a special needs child.
Nobody can turn back time and no responsible parent can live as they did before children came along. But that doesn’t mean you should abandon the hobbies, events and activities you enjoy doing.
4
Allow Yourself To Have A Good Time
Don’t feel guilty for a having some fun, even if it’s once in a while. Ask a close friend or relative to watch your child or a few hours, so you can get a mani/pedi or go shoot some pool with your buddies. It will be beneficial to unload the weight of your responsibilities for a short time. Whether or not there is a disability in a family, parents who take care of themselves and give themselves an occasional break are better able to take care of their children. More than most parents, you need to exercise that self-care.
And if you continue to feel guilty, look for ways to involve your child and other family members. By giving yourself permission for joy, you will bring home new and positive energy for your whole family.
5
Stay Connected With Friends And Family
Friendships are like tea bags – you don’t know how strong they are until you’re in hot water! When the chips are down and times are tough, you find out who is really there for you.
The support of others around you can help you make it through the hard days, aid you in making decisions and provide the physical and emotional breaks we all need now and then.
So realize you’re not alone and don’t isolate yourself. Maintain positive relationships with those who understand your child’s condition and support your family. Spending time with those who love and care about you will make you feel better about yourself and your situation.
6
Seek Help When Needed
Recognize there are going to be times when all the challenges and stress get on top of you, and you need an extra pair of hands to get you through. There’s no shame in asking for and accepting help. 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 best friend and ask her/him to pick up some groceries for you at the supermarket when she/he’s shopping for her/his family. Or ask your neighbor to meet your child’s bus if you have to work later than usual.
7
Reward Yourself
You work hard on behalf of your family. So, do something nice for yourself, each week, no matter how small. It could be as simple as setting aside 30 minutes to read your favorite magazine, watch television or text, email or call a good friend. Appreciate the little things in your life, like inviting the guys over to watch the game or for a cookout.
8
Accept Unspoken Praise And Appreciation
Your spouse or partner may be too overwhelmed in the midst of all the challenges the two of you face to tell you how much they care. Your special needs child may be unable to properly communicate how grateful they are that you accept and love them.
Nevertheless, know that your child and family appreciate you and the difference you make in their lives.
9
Maintain A Positive Perspective
There’s no getting around it, your child’s disability has changed your life.
But nobody gets the life they expected. Lightning strikes, plans don’t work out, things change. Everybody, with or without a child’s disability in their lives, ends up in a place they didn’t expect, doing things they never would.
The trick is to do the best with the life you have. With the start of a new year, this is a good time to make some long-lasting resolutions. With the right outlook and a good support system, you’ll have a good life, and so will your whole family.
Yes, you have a son or daughter with a disability. You may also have a teenager with blue hair or a good singing voice or one toe larger than the other. It is what it is – another unexpected turn on the unpredictable road of life.
You can’t always control what happens in life, but you can change how you react. You can decide if a disability is going to rule your existence, or if you are going to take control, fight back and reclaim your life.
It is quite often just a matter of perspective.•
ABOUT THE AUTHOR:
Deanna Picon is the founder of Your Autism Coach, LLC, which provides personalized guidance, comprehensive support programs and seminars for parents of exceptional children. She is a parent of a non-verbal, young man with autism. Deanna is the author of “The Autism Parents’ Guide to Reclaiming Your Life.” She can be reached at www.YourAutismCoach.com or @yourautismcoach
