How Do I Do It All? The pressure is all on me! – How realistic is it to give child everything he needs? Greenspan often says, “You are not the cause of your child’s problems but you can be part of the answer” This is supposed to be an encouraging comment that empowers a parent to feel that they are not helpless and that they can do something about their child’s condition, but implicit in this statement is that at bottom we are responsible for how our child turns out. We are responsible to meet the demands of a child’s autism, and boy are those demands enormous and endless! Here are some possible suggestions to discuss:
Get out of crisis mode. There is great pressure to do something now! To fix your child by the time they turn 4 or 5 or 7, otherwise, we are told, that the window of opportunity will close and meaningful progress (meaning leaps of improvement) will become much less likely. This type of message is enough to put anyone in a state of anxiety and panic. However there are several things to remember that contradict the message, “DO EVERYTHING NOW, or your child will be a lost cause!” 1) Most children with autism improve incrementally, in fits and starts, throughout their childhood. As Greenspan says, “It’s a marathon, not a sprint.” The “Recovery” model that is often referred to in the autism community can create undue stress on parents. The more realistic thing to expect is that breakthroughs come in stages and over time. It is much more constructive to ask, “Is my child improving?” rather than “Is my child recovered?” 2) There are certain threshold periods where a child’s brain reorganizes itself and he/she matures neurologically—adolescence, for example. All the work and intervention you have put in might not fully show until the child experiences these neurological thresholds. 3) Autism requires intensive intervention but if this intervention is not done appropriately, you can dig the hole deeper, as Greenspan says. There is nothing sadder than a child who has been burnt out on 40 hours of ABA over years and years without meaningful progress. You end up having a child who cannot initiate any meaningful engagement with the world, a child whose interaction with the world has been depersonalized, a child who has internalized his/her distress. Get to know the difference between challenging a child and stressing a child. Even if you are doing appropriate intervention do not overschedule a child. Children with autism are over-sensitive to stimulation.
Get support for your own emotional needs. Having a child diagnosed with autism is probably one of the most challenging emotional events that a person can experience. Every one is expecting you to do things as if you are in top emotional and physical form – learning and carrying out interventions that would challenge even the most experienced PhD clinician, but you feel as if
you are at your lowest form, and the stakes couldn’t be higher. The emotional experience of having a child with autism takes time to process and master. Use whatever resources you have, professional and personal to get support. And remember, that as tragic as it all seems at this moment, many parents say that the experience of fiercely loving and advocating for their vulnerable child ended up being the most emotionally rewarding and proud part of their lives.
Know your personality type. Be reflective about your style of doing things. Are you super structured? A “Type A” personality? Then schedule your floor time sessions each day. Are you more improvisational? Then decide which activity (bathing, dinner time, etc) in which you can try doing some floor time.
Do something rather than nothing.
Don’t let the perfect intervention get in the way of a good (and realistic) intervention. There is a popular self-help book that came on the market a couple of years ago that had a chapter in it called “Slice the Sausage” Only take on what you can handle at the moment. Unrealistic expectations will only demoralize you. If you have four kids including a new infant, just accept that you will not be able to do 7 hours of floor time with your child. But define a workable plan and pursue it. As you get better doing the intervention, you will probably be skillful and efficient enough to squeeze in more floor time sessions.