I am bringing you a very special message entrusted to me by a number of mothers of children on the autism spectrum. They recently responded to my question: what do you want most from your families?
I am the grandparent of an autistic or special-needs child (I think the issues must be very similar with any special need), so I know first-hand how much everybody in a family is affected by the extra concern and care involved, even before a definitive diagnosis is made.
While I am writing this primarily as a grandparent to other grandparents, I hope those of you who are the mothers and fathers of special-needs kids might also find something here which you can take back to your extended family to open up a constructive dialog.
I feel very grateful that these generous young moms took the time to share their thoughts with me. Some of the things they say they want most from their families may surprise you.
The first message, loud and clear, is how grateful they are for family interest and support. That is the bedrock of everything else.
How can we grandparents best show this?
Monetary assistance can be a life-saver. Even if our kids are working hard and doing well, the cost of services and care for an autistic child are financially draining. We can help pay for babysitting to give them time off. We can help cover the cost of some of the intervention programs and practitioners not covered by insurance. We can help send their family to special family summer camps with activities for autistic kids. Any help, however small, can make a difference to them, because it shows them very concretely that we are conscious of their needs.
But money is not the most important way they want us to show interest. One of the deepest needs these moms expressed was to know, without a doubt, that their family loves and accepts their autistic children as fully as other children in the family.
Does this shock you? How could our children think we don't?
Because talking openly and honestly about autism's effect on the whole family is not easy. This leads to frequent misunderstandings and hurt feelings on both sides.
Here are some painful experiences described by moms:
In the beginning, when autism begins to emerge, there is typically a period of uncertainty. Is the child's development simply delayed, or is it a sign of something else? We grandparents, intending to be helpful but as frightened as the parents are, often try to handle our anxiety either by insisting that everything is okay or by pushing for an early diagnosis, maximum intervention as soon as possible, etc.
Both of these reactions are well-meaning. The problem is that our way of coping doesn't always work for our kids. They may feel we're implying they aren't good parents, something they may already believe because their child isn't like other children. As one mom told me, her parents keep suggesting that she should just read to her child more and everything will be fine. It's as if they think she is trying to "force" her child to be on the spectrum by her insistence that the problem is deeper. She feels invalidated, even blamed, by them. Is this their intention? I doubt it, but everyone seems to find this impossible to discuss.
Jumping in, on the other hand, might seem to be a good thing. But even that can feel overwhelming to parents, who may need to proceed more slowly. The sense of urgency we tend to have when our families are threatened can lead to short tempers and a struggle for control. I know one grandmother who became very upset when her daughter in law didn't agree with her ideas about the special services her grandchild should get as soon as possible. I understand her anxiety and purpose--wanting the child to have access to every available resource--but I also suspect the her daughter in law sounds hostile because she doesn't know how else to say, "Back off. Don't you believe I want the best for my kid too?"
Some significant hurt feelings were expressed by the moms who talked to me. One, for example, described how sad she is because her mother, who was very involved early in her child's diagnosis, has seemed to stop showing interest as he has become older and harder to handle. She can understand that it is more difficult to communicate with him now, but wonders why he isn't even asked about. The apparent withdrawal by grandparents over time, mentioned by several moms, is extremely upsetting to them. Autism doesn't go away; our children need us to love their kids and show it as long as we live.
Another mom said their family is routinely not invited to join bug family vacations--perhaps because of the perception that these would be too "complicated" for them to manage. She's trying to be fair-minded about the possible motives for what feels like a cruel rejection. Since no one in the family asks how she feels, she remains silent, assuming the family prefers to keep her child at a distance. Would they really like to know how she feels? Would they do something different if they did know?
Many moms are frustrated when their parents persist in sending them articles on autism, because they have already read those articles and more. Sometimes it seems to them that their parents are focusing too much on autism rather than on the child. They can get all the information they need through organizations they know about or belong to. On the other hand, they do appreciate it when we grandparents join special needs organizations to educate ourselves, because that's an active step on our part.
One of their greatest fears is that their families don't see their autistic kids as the delightful human beings they are. Yes, they may be nonverbal or perseverative or slow to show affection or volatile or highly idiosyncratic, but they also possess important strengths, appealing personality traits, and a range of emotions. Do we express our awareness of these specifically and frequently enough?
So many of these moms introduced their children to me with the word "beautiful" and sensitively described the many ways they have learned to tune into them, to "follow their lead," as one mom so wisely put it. This core truth deserves to be recognized and celebrated by us as parents and grandparents. We can learn from our children how to stay close to them and their children. We can follow their lead.
Because what they want the most, what makes them the happiest is when we grandparents demonstrate that we do know their children intimately. When we know what kind of cereal or TV shows or physical closeness they life. When we discover, by observing and asking, how best to have fun with them. When we show interest in learning how we can make their participation in large family activities enjoyable for everybody. We don't have to know all these things perfectly all the time--after all, children grow and change--but we need to be clearly willing to ask about them. And to talk honestly about what we can and can't do--and why.
If you avoid asking your children what they want and need from you, ask yourself why.
Are you afraid they will ask something you can't give? It's all right not to be able to do some things; you can probably do others. It will help them to know that you are willing as far as you are able.
Are you uncomfortable with the idea of autism? You are not alone. You might consider joining a group of grandparents or starting one in your area or even via the telephone. Or go online and discover a whole world of blogs written (mostly) by mothers of autistic kids. My daughter in law writes a fascinating blog that helps everyone in our larger family understand the day to day experience of her family and that brings out the uniqueness of our grandchild.
You might even encourage your own children to start a blog or privately email you their inner thoughts as a way to let you more into their world. All of the moms I talked to via email wrote in an extremely thoughtful and articulate way. If their families don't know this about them, they are missing something special.
The bottom line is this: if you (on either side of the generational divide) will gently open up discussion of touchy topics and be willing to accept the feelings they bring up in yourself and each other, you will learn much more about how best to take good care of each other.
Grandparents: this is probably the most important attitude you and I can convey to our children--that we welcome their input to become better grandparents because we trust they believe that's what we want to be.
Parents: trust that your parents truly want to become what you need them to be and risk giving them input from the most loving place you have in your heart.
Please let me know what happens when you do.