In her new book, On Their Own, Anne Ford shares with parents her hard-earned wisdom about the demands and rewards of raising a child with learning disabilities. Based on her own experiences and conversations with hundreds of parents across the country, Ms. Ford realized that parents were often overwhelmed with worry about their children. In On Their Own, she urges parents to reflect on ways to sustain themselves for the long haul – by seeking help and moral support, by not expecting miracles of oneself or others, and by keeping a sense of humor when the going gets tough.
In this excerpt from On Their Own, Ms. Ford offers parents words of comfort and common sense for coping with worries about their children.
Lessons Learned – a Checklist of Realities
Isn’t it awful, reading a book to gain a measure of hope about your situation, only to be told that you have to be the one to apologize and that the main responsibility for developing a better relationship with your adult child falls upon you? It is awful, yes, but parents of LD children and adults have dealt with truths far more difficult than these. Here is a checklist of realities I have struggled to learn and accept:
I’m not alone, even though I think I am
This is an old standby left over from the earliest beginnings of my journey with Allegra and learning disabilities. I’m not sure why, but for some reason parents of LD children and adults all too easily believe they are the only ones going through something like this, that no one understands, and they are destined to go through it all alone. Even when such thinking is proven false, the idea lingers on and pops up at unexpected times. This can be especially difficult for single parents who have no one to take over once in a while or to bounce ideas off of or to help share in the frustrations.
The reality is that we are alone sometimes – even in two-parent households. Yes, there are hundreds of thousands of other parents undergoing similar trials, but right then, in the moment after you’ve hung up the phone after a heated argument or just learned of yet another unexpected difficulty, no amount of imagined camaraderie helps ease the situation. When I’m in the middle of trying to figure out how to handle something, it simply doesn’t matter how many others are going through something like it. They’re not with me then!
Once the situation settles and the smoke clears, it’s true: the knowledge that others are experiencing similar challenges really does make you feel part of something larger than your own narrow experience. There’s a sense of belonging to a club – maybe not one you wanted to join, but one that truly does give a measure of comfort.
If this sense of belonging and comfort has completely eluded you, or if you feel isolated and lost, you do have options. Parent support groups and LD organizations such as Learning Disabilities Association of America (LDAA) are filled with parents who feel exactly as you do now. (You’ll find a list of these organizations in the Resource Guide.)
I don’t know what I’m doing or if I’m doing the right thing
This is a feeling that hovers in the background all the time. Well, guess what? No one is perfect. You’re not. I’m not. No one is, and not every decision we make will be the best one, or even all that good. The reality is that no one else in your situation could do a better job than you are doing right now.
Energy gets channeled
The amount of energy expended on a young child with LD is enormous. It lessens somewhat when a child becomes an adult and leaves home. Often this leaves a vacuum in a parent’s life, especially one who has devoted every day, all day long, to the challenges of LD. That excess energy needs to go somewhere. Why not channel it into positive, outward directions? Become involved in local LD groups. Volunteer. Use your hard-earned knowledge to help other parents just starting out with a young LD child of their own. It helps so much. If nothing else, it relieves those feelings of isolation. Don’t worry about feeling left out in these organizations and support groups, or think that you might be the only parent there with an adult child. Many parents who join these organizations do so when their child is young, but they remain on long after their child has reached adulthood. Younger parents want to hear your experiences. They want to know what to expect and how to prepare for it. To them, you are an invaluable source of wisdom and support.
If you need help, ask for it
Oh, what a hard lesson this was for me. I spent far too many years thinking I could handle things on my own without help from family, friends, or the professional community. Now it’s quite the opposite, especially when it comes to professionals. If I don’t know something, I ask. If I don’t feel qualified to handle a situation or advise Allegra, I find someone who can. Don’t be shy.
You don’t need to know everything
This goes hand in hand with the previous lesson. When asking for help, try not to get tangled up in insecurities about your own lack of knowledge about LD. I spent twelve years as chairman of NCLD, I raised a daughter with LD and wrote a book about it, and I still have trouble explaining Allegra’s disability when someone asks. I sometimes meet parents who understand every bit of obscure jargon and can expound at length on the very latest research findings. And me? A phrase like “Nonspecific nonverbal, global disabilities” leaves me standing still, blinking, trying like mad to appear as if I know what the heck it means. I am not denigrating these parents. Obviously, it is preferable to learn as much about your child’s particular situation as possible; but if you don’t know or can’t quite understand it, have faith that there are professionals out there who can help you.
Not everyone will understand your experience
This is a reality that feeds our occasional sense of isolation, but it’s a fact that sooner or later we all need to come to terms with. Not everyone understands our situation. Friends and relatives may nod and make sympathetic sounds, but it’s almost impossible for anyone to really know what you’re going through unless they have a child with LD of their own. Rather than waste emotional and intellectual energy on wishing they understood, follow my earlier advice and try to channel that energy in positive ways. You can start by trying to release any lingering resentments. Ask yourself this: Would you understand if the situation was reversed? (First, impulsive answer: “Of course I would!” Second, more honest answer: “Well, maybe not.”) No matter how compassionate, no matter how sympathetic, only another parent in a similar situation truly knows what you are going through.
Wanting to rip someone’s head off is normal, if not advisable.
Now that you’ve followed my advice and become a serene and tranquil person free of all resentments, what about those times when someone says something so outrageous and hurtful that you feel you really have no alternative other than to kill them and bury them in the backyard? This is when your best friend hears that your son finally has a girlfriend and reacts with a shocked, “Really? But what would she see in him?” Another time was when the pediatric psychologist advised me “for the good of the family” to send five-year-old Allegra away to an institution where she would live out her days separated from everyone she knew and loved.
My personal pet peeve is when someone casually compares Allegra to someone much more disabled than she is, for example someone with severe mental retardation. This often comes with a bit of unwanted advice. “Have you thought about sending her to an assisted-living home?” asked one oh, so helpful friend, who knows Allegra has been doing quite well living on her own for the last ten years.
What do we do in such situations? Grit our teeth. Bear it. Try to remain calm and civil. Maybe try to explain the situation in a way that might help them understand, even if they are impervious to such explanations.
Then again, sometimes it’s fun to just let them have it.
No matter how bad things get, someone else has it worse
You will always be able to find someone with a situation far worse than yours. I could list countless examples, but so could you. Think about it.
It doesn’t end
This used to be something I refused to accept. I clung to the idea that a cure was just around the corner and someday all the difficulties would disappear. I still cling to a version of the idea in which Allegra’s LD doesn’t completely disappear, but we’ll learn to accommodate the challenges and lessen their impact to a manageable and even negligible level. Wishful thinking? Maybe. But maybe not, which leads me to the next reality:
Don’t give up the fight
Days, weeks, and even whole months will come along when you’ll want to surrender, throw in the towel, and say, “I’ve had it, I quit!” This is how it happens for me. “I can’t do this anymore,” my interior voice says. “I’m tired – I’m really tired. I’ve been doing this every day for almost thirty-five years. I have a child who has been hovered over all her life, and now I feel like I’ve created an adult who still expects to be hovered over and not challenged. It would be nice if someone else could take over some of this.” And so it goes, mostly when I am physically tired, but it only lasts a little while, usually overnight. The urge to surrender comes and goes. The pressures build, and with them comes fatigue, and then my mind wanders into self-pity or thoughts of escape, or I dwell on old resentments about Allegra’s father and how awful it was that he never acted like a real father to her, and on and on.
Well, okay, fine – for a while. But sooner or later things settle down and the urge to surrender fades, and I once again face the daily challenges and continue to do so until the next time. Often, all it takes is for me to hear her voice.
It’s a roller coaster, isn’t it, this parenting thing we do? Ups, downs, unexpected curves, and sometimes unexpected heights.
Learn to laugh at it all
Remember in Reader’s Digest, the section called “Laughter Is the Best Medicine”? How true that is. Humor has been a saving grace in my family, with Allegra’s own sense of humor at the forefront. While all the rest of the uncaring, uncomprehending world swirls around us, we have learned to take refuge in a simple laugh at our own foibles and difficulties. I truly don’t know what life would be like for us if we didn’t have this as a buffer.