Challenges of Families Raising a Special Needs Child
By Esther B. Hess, Ph.D.
(Published by the Los Angeles County Psychological Association: May/June 2004)
When I began to specialize in my career as a clinical child psychologist, I realized that parents struggled on many levels to deal appropriately with their child impacted by autism. In the past, families facing adversity often counted on extended family for support. As a consequence of economic growth and diversity, great distances often separate individuals from their family of origin. In the course of losing their original "village" of family supports (to borrow a phrase from Hillary Rodham Clinton), I, as the mental health clinician on the team, will often suggest the creation a new albeit smaller group of people made up of the nuclear family, friends and interventionists, collectively involved with the care of their child.
Consequently, as I approach the assessment of a new family in my practice, I am often wondering about the collective emotional challenge that families face when raising a special needs child. Specifically, how do families cope when they are given the diagnosis of autism for their child? What are the differences if any in the way men and women grieve in regards to the autistic diagnosis? How does each take in support? In what way does autism impact on the parents' marital relationship? And, what's the impact of the diagnosis on the typically developing siblings of the challenged child?
When I think about how a family whose child has been diagnosed with autism cope with the whole process, I reflect back to a story that was told to me by a colleague. The story is entitled a Trip to Holland (author unknown). In a nutshell it's about a person who has spent months if not years planning a trip to France only to find out as that as the plane lands at the airport that she is not in Paris at all, but in Amsterdam! It's not that Holland is a bad place, it's just a different place, necessitating that this individual now learn a whole new language and meet a whole set of people that she most certainly would not have met had it not been for the sudden change in flight plans. The story talks about the fact that there are actually many wonderful things in Holland, but it also honestly reflects the hurt, the pain, and the disappointment about a trip that suddenly and for no apparent reason went awry and ended up far from the original destination.
I believe this story dramatizes in a very vivid way the dilemma that parents find themselves in when they discover that the child who they were suppose to have, in their mind's eye, is gone and in his or her place is new child, one who was born with developmental challenges. It's not that this child doesn't give joy in his or her own way but the circumstances are unexpected, and as a consequence of their baby's special needs, these parents' lives are changed forever.
How do parents deal with these challenges? Well, they grieve. Grieving is necessary when you go through a loss. It's the first step, before you can get better. There are several distinct stages to this process, and they are not necessarily sequential, often lasting longer than one would like.
The initial stage of grieving is denial. That's when the parent refuses to believe the doctor who suggests the dreaded "A" word. Parents cope by getting second opinions.
They might even search out 3, 4, maybe even 5 doctors hoping to hear that the initial impression of that first M.D. was all wrong and that their child is just fine. Even doctors go through denial. Time and time again, I've had parents tell me that early on in their child's development they sensed something was wrong with the way their child interacted with them. Rather than respond immediately to the parents. concerns the pediatrician reassured them, urged them to wait and told them not to over react. Extended family members find autism hard to accept as well. Grandparents say things like, "Your great-uncle was a late talker, nothing to worry about" or "That child is just spoiled, you're too lenient with him." It's not that these individuals are so critical of a particular child rearing style. They access denial, because if the actual diagnosis is true and particularly if they live far away from their children's new village (as many of the grandparents in my practice do) then they don't know how to help their children get through this trauma. This sense of helplessness makes them feel impotent and many people want to naturally push that feeling away.
Depression often follows denial. It is the deep sadness at the loss of what should have been a typical baby. One mother told me, "I mourn for the child who could have been." Now, instead of imagining endless possibilities of what their child could become in life, the parent worries about who will look after their son or daughter when they are no longer around?
Rage is a close cousin to the helpless of depression. It is the sadness turned outward. It is the anger expressed at a God who has forsaken this family. It is the frustration that a father throws at a mother when he reminds her that it was she and not he that wanted "just one more child", and it is the not so subtle verbal attack of the woman towards the man, when she accuses him of having the bad gene that did this to their son. These two last accusations, based each on potentially a fragment of the truth, can be particularly destructive to a marriage and require fairly immediate couple intervention to prevent the accusations from festering into untreatable wounds.
Once the rage and the accusations have been spent, the bargaining begins. That.s when the father may express a silent prayer to the Lord. He reminds Him or perhaps begs Him to remember himself and his small child and offers once again to believe in God, if only He would make his baby typical and wake the family from this terrible nightmare.
Eventually, most families come to terms with the diagnosis of their child and they learn much like in the Holland story that although this journey that they are all on is exceedingly different that the one they were suppose to take, it offers, if they can allow it, a rich albeit different tapestry to their lives.
Men and women cope differently with personal adversity. Typically, and you'll excuse me for stereotyping, woman are by nature proactive. They become their children's nonstop, twenty-four hour a day advocate. They are simultaneously the foot soldiers and the generals in the war against autism. You will see them at local and national conferences, soaking up as much information as they can in order to try and disseminate what is real, what makes sense, and what will work to bring their child back into social communication and the social community at large.
There's not a thing these mothers won't do. That includes driving up to three hours a day to the mired amount of interventionists that their child requires to see every week. It means their baking glutton free bread because it might help their child relate better to them if he/she is not eating wheat products. It means that when they are exhausted beyond words that they still do not rest, but rather get down on the floor to do numerous sessions of Floor Time, because this time the hope is that their child will actually look at them rather than through them in the interaction.
Floor Time, a methodology created by Drs. Stanley Greenspan and Serena Weider, is a highly interactive approach that often uses elevated affect and gestures to work with children with developmental delays. Floor Time takes into consideration elements in the child's developmental level, underlying biological constraints and the relationship between parent and child that might be interfering with co-regulated interactions. The premise behind the methodology is to help a child move up the developmental ladder by creatively encouraging the sharing of thoughts and extended engagement which will connect the individual to eventually coming up with logical and meaningful ideas. I am one of Dr. Greenspan.s Senior Clinicians here on the West Coast and as a Floor Time practitioner, I'm the one supporting and coaching the parent from "behind the scenes" to stay with the interaction by following the child's lead and connecting with him/her by getting interested in whatever he/she is motivated to do. It is not an easy task to always stay engaged with your kid and there are many times that the mom wants to quit. But, she knows she can't. She knows that she has to keep going forward for the tomorrow of her child.
Fathers, on the other hand, are "fixers." (Again, please excuse the stereotyping). They are raised since childhood to be solution oriented. Having a problem that they can't fix easily, like their child's autism, makes Dads feel incompetent. So, to feel better, they retreat a bit into their place of competency and mastery. They go to work. There are many reasons that Dads retreat into work. Some wives accuse their husband of going to work to escape the nonstop chores associated with the raising of their child. But my experience is different. I think that there are a lot of very good Dads out there who go to work because they know that this journey that they are on is going to cost a lot of money to implement and they are the ones who have to pay for it.
However, when a husband does come home from a day's work, it.s not unusual to see his wife spent from a frustrating day of endless carpools and fights with insurance companies or miserable reports from yet another I.E.P. A Dad has got to wonder where is the Floor Time for him? What space is available to a couple whose job requires them to be on 24 hours a day, 7 days a week? And what happens to a man when the wonderful fun person whom he married is sad all the time. Prolonged grieving can threaten an already stressed marriage. It remains critical for partners to continue to reinvest in their relationship by making time for each other so that they do not forget what attracted them to each other in the first place.
As mentioned, in my practice, in addition to helping the child diagnosed with autism, I also see the family members who are impacted by having a challenged child in their midst. I will often extend support services to the healthy brothers and sisters of individuals affected by their disability. I find that many of these siblings reach out to help with their brother or sister and with appropriate training tend to be .natural Floor Timers. in their ability to connect with and maintain extended periods of play with the special needs child. There are other times when the typically developing sibling needs their own emotional support as they become more aware of the extent of their sibling's diagnosis.
I was recently seeing a woman whose brother is autistic. She is now married and she and her husband came in for brief marital counseling after the diagnosis of their own child with autism. Upon hearing the initial diagnosis, she became depressed for days on end. She had been aware that because of her brother.s diagnosis that she had a greater genetic risk of having a child with the disorder. But, denial is a strong defense and she never really thought that it could happen to her.
Initially, the husband was very supportive of his wife. In fact, on the day that they found out the news, he went and bought her a piece of jewelry, in an attempt to cheer her up. The jewelry was beautiful and the wife was most grateful for the gift. But, she was still sad. So, so sad. The husband was completely befuddled. He really didn.t know what to do. He had been raised in a family, where sad feelings were not really accepted. In fact, he would recall that his mother would send anyone away from the table if they had a sad face on and would only ask them back to be part of the meal, if they were sufficiently cheered up. His wife's sadness was confusing. It also scared him. "What if she stays sad forever?" he asked in dismay. He turned to me and wanted to know what she wanted him to do (remember, I told you that little boys have been taught to be fixers).
The wife, guided by my therapeutic support, answered very quietly, but very definitively. "The jewelry that you gave me is lovely and I love you for thinking of me. But what I need from you, you cannot buy. I need you to let me be sad. I need you to let me be sad and not to try and fix it. But if you want, you can be sad with me, because I know that it was our baby that has just been diagnosed with autism and we're going to have to get through this together." This young couple was wise beyond their years. They intuitively knew that they needed to align with each other during this process and sought out my assistance to learn how to understand and how to respect each other's coping mechanism. It is critical that families going through the trauma of diagnosis don.t inadvertently shut each other out.
How do typical developing kids cope with the fact that their brother or sister has challenges? Well, first the good news. Research has shown that children who have siblings with developmental delays do not have any more neurosis that the general population. In fact, because they have been involved with mental health issues much of their lives, these children tend to eventually grow up and become involved in some kind of helping profession.
Does Floor Time work as a way to engage one brother to another? Recently, I you might want to ask him what else he wants to do. Tell him to give you a list of fun things to do. If you want to know what the point is, the answer is, Communication! He sometimes has trouble communicating. Have fun! And have a good experience, and he will communicate much better!.
However, you can't deny the facts. Children with special needs get more attention than their sibs. That's a truth that needs to be acknowledged. I have found in my practice, that once truths are openly acknowledged and discussed, that kids deal better with the information. Do you as a parent need to tell the child that his brother or sister is autistic? It depends. The determining factors should be both the chronological and developmental asking. Sometimes, I see parents, friends and interventionists, out of their own anxiety, sharing information that the child has not asked for. Here, I would have the adult apply the Floor Time philosophy of finding out exactly where their typically developing child is at and then following that child's lead in the answering of specific questions regarding the developmental status of their brother or sister.
Too often, parents tell me that they feel guilty about all the time that they give to their special needs child, in contrast to what time they have left to offer to their child who is developing typically. Parents complain that there are just not enough hours in the day to take care of the general needs of their household, much less extra time for their kids without delays. For this dilemma, I suggest making a date with your typical child to do something within the context of your day that you have to do anyway, like grocery shopping. Ask your typical child to accompany you to the market. But do it in a way that let.s them know that you would like to do something very special with them. When you are actually shopping, ask them if they would like to pick out something special just for themselves that they don't have to share with anyone else in the house. And while you.re going down the aisle, start talking to your child, not necessarily about what they did today in school (children have a tendency to shut down when a parent asks too many "w" questions), but rather, talk about their favorite cereal. Talk about Capt. Crunch and how amazingly enough, when you were young, you loved Capt. Crunch. Children love to hear how their parents were once kids themselves. You are more likely to have an intimate relationship with your child, which naturally extends into sharing personal information, if you follow that playful Floor Time idea and get interested in what your child is interested in. That's your admission ticket into their world of engagement.
In review, families deal with the challenges of raising a special needs child by grieving their disappointments, coming to terms with the diagnosis, accepting each other's coping styles and reaching out beyond themselves (beyond their original village) to both receive help and gain invaluable information. Floor Time, as an informational tool, instructs parents how to be attuned to whatever their children are invested in thus providing a model for families to connect and reconnect with all of their children, as they encourage ascent up the development ladder.