why is the parents support center important

Try a little tenderness



by Mary McDonach

When you are first confronted by a diagnosis of any type of syndrome, disease, or congenital malformation in your child, a natural response is the Grief Reaction.

Because the grief reaction is a natural response, you are likely to go through at least some of the Stages of Grief. What can you do? You can either simply endure and hope that it eventually subsides or you can consider a few practical steps to process your thoughts and feelings a little quicker in order to make things a little easier... on everyone.

Just understanding what is happening by looking for the signs and markers of your grieving will help you on your journey through the stages of grief. Everyone's experience of grief is unique; there is no right or wrong way to feel, and whatever you are feeling, it is valid.

Let's go through the stages of grief one by one...







Stage #1: Disbelief



What Other Parents are Saying:



"While I was still in the hospital after Tony was born, the pediatrician told me that he was blind, but it didn't sink in. I really believed that all I had to do was to get him home and then he would be okay."



-From Children with Visual Impairments



You have an intellectual understanding of what you are being told but you also believe that someone has made a "Terrible Mistake" (in just this one case) and what is being said does not apply to you or your baby. Often, the paradox here is that you asked for this consultation; you felt at some fundamental maternal level that there was a problem with your child's sight!

This is not just a matter of believing the doctor; it is also about being able to feel at a visceral level that the information you are being given is correct. It can be helpful to consider where the doctor is in this situation—He does not want to be giving you this diagnosis any more than you want to be listening to it and he will have made triple sure of his facts before putting himself in a situation that makes him seem like the cause of your pain.

Health professionals do not lightly give distressing information (although they may often seem cold or uncaring—this is quite possibly their own poorly thought out emotional response to the situation). They are well aware of the grief process, and the long-term consequences of living with and raising a blind baby. And, yes, very occassionaly mistakes may happen, but you can be sure your doctor will have done all in his power to ensure the information he is presenting to you is accurate.

Your doctor will know that often, in the immediate aftermath of the diagnosis, you are unable to process any other information. I know from personal experience that after the initial few sentences from the pediatrician, all I could hear was a voice in my brain saying "She's got what?" repeatedly. It is difficult to assimilate more than the very basics at that first consultation and it happens to almost everyone. That's why the first contact with the physician is brief; it gives you an opportunity to go away, speak to your significant others, come, at least, to a first position of truce with the information you have been given, and sort through the questions you would have asked at the first consultation had you not been so traumatized.

During this stage, you may find that your emotional responses to things that would have made you cry, laugh, etc. are all more muted. You may feel a withdrawal from the world you usually inhabit and an inability to articulate how you feel. This can put a strain on your relationships, and if you have decided not to confide in anyone about the diagnosis you have been given they may feel confused, offended, or concerned about your apparently sudden personality change.

It is easy to see how logical, at this stage, it can be to simply ignore the issues surrounding your child's blindness: if you are not addressing things then they can't be happening because if they were happening you would be addressing things! There is a comfort in reassuring, circular logic, and it may work to relieve the pressure you feel, for a time, but for the sake of your child, the shorter the denial reaction the better.

Whilst all this is going on, though, your subconscious cannot ignore the feelings you are suppressing and tries to reach its own accommodation with things, so your sleep can be disturbed and provide little rest, which has further impact on how you feel during the day.



Stage #2: Anger



What Other Parents are Saying:



"At first I was very angry and bitter, and I blamed God. I have since learned to adjust to my son's disabilities. Never will I accept them, but I will continually adjust."



-From Children with Visual Impairments



Anger is the next stage in the grief process and you may surprise yourself with your willingness to assign blame for your child's condition! Blaming yourself, your partner, your prenatal care, your post natal care, your housing conditions, your mother's "little drink problem," that spray you used on the cat, all allows you to indulge in a search for a reason that has little to do with informing yourself about your child's condition and lots to do with an atavistic need for a scapegoat.

The "why me" question can exhaust you looking for answers and more often than not the only answer you are ever likely to get is "why not you?" "Why did God forsake me?" you may ask, but God did not forsake you—you had a baby with special needs!

Does it really matter how your baby came by the condition? Will it help if you finally track down every last member of your husbands' family in order to prove to him that it must have "come from his side?"

Will your baby be blind regardless of How's and Why's? The distraction of the anger phase can give you useful time and motivation that you need to let others know what's happening with your child.

If you feel you have to say to your family or your neighbors or the postman "My baby is blind because my nogoodnik husband has a genetic weakness" then fine. When you remember saying that next year you may be embarrassed, but at least today the information is out there and you are starting to deal with it—after a fashion!

Blaming yourself can be the beginning of a lifelong relationship with guilt. This will not enhance your relationship with your child or with the rest of your family, so work through your feelings about blame with a view to getting rid of them. They will not help and in the long term these feelings will be damaging—to everyone—if they are left unchallenged.



Stage #3: Bargaining



What Other Parents are Saying:



"I know Jason has delays—I just keep expecting them to go away. I wonder what I have done wrong that he still has these delays."



-From Children with Visual Impairments



This is the fanciful part of grieving! You may not be sure who you are bargaining with but very often as parents we come to a position I think of as "negotiating with the cosmos." Are any of these statements familiar to you?:

• We are hoping that she's not so badly affected (by whatever).

• The doctors say it is a very mild case.

• Scientists are searching for a cure; they are very hopeful.

• He's affected to this degree; we couldn't have coped if it had been worse.

This can bring a subtle skewing of your ability to see the facts as they are. If you entrench yourself in the position that you can cope with, say, blindness but not blindness and deafness, are you truly open to seeing your child for who she is? Negotiating with an apparently silent deity or universe is a facet of bargaining that can leave you with a profound feeling of isolation, but being aware of what you are experiencing and knowing that it is finite often helps.

Bargaining can often, too, lead to a false perception of acceptance. One mother I know had found a way to protect her child with albinism: by not taking him out during daylight hours. Certainly, by treating her son, not as having albinism, but, more disturbingly to my mind, as though he had vampirism, she had come to a bargained accommodation with the facts. He could not be burned by the sun if he was never exposed to it and that was the current amount that this mother was able to accept. It is readily apparent though, that this was not a situation that could go unchallenged indefinitely, for anyone's sake.



Stage #4: Depression



What Other Parents are Saying:



"After a few tries of going to the store or to church, I just stopped. I couldn't stand how people looked at my baby (or at me)."



-From Children with Visual Impairments



Depression also can make an appearance whilst you are coming to terms with your grief. You will be aware that there is far more to dealing well with depression than I can write about here. So if you are currently suffering from the effects of depressive illness GET MEDICAL HELP! That you should deal with it is absolutely paramount.

You may feel that there is no reason for you to be depressed, you had a child; no-one died. It is reasonable to say, however, that you are grieving for the child you expected to have; no parent starts out thinking "I hope my child will be blind." That would be ludicrous, so when your child is diagnosed as blind (and everyone hopes fervently for another outcome) there is a kind of bereavement.

You have every right to grieve: for your hopes, for the trauma you have been through, and for your child and the limitations this condition gives him.

There is an unexpected positive to be seen in depression, paradoxically, because this is the immediate forerunner of acceptance and means that you have accepted the facts of your child's condition, at least to some extent (or why else would you be depressed?).



Stage #5: Acceptance



What Other Parents are Saying:



"From my child, I have learned to love unconditionally. My life has been opened up to include experiences I never would have considered."



-From Children with Visual Impairments



This will come. You will accept a new reality for yourself and your family. You will come to visualize a viable new way forward, embracing the new reality and accepting the burden of the work that lies ahead.

For my part, I spent a short time in a mini-phase of Trying it on for Size, also known as Inappropriate Disclosure. I have a vivid recollection of telling the manager of my local Gecko! Shop that I would be unable to buy one of his fine animals because my baby had been born blind!!!

Neither then nor now have I ever had any desire to own a reptile so exactly what I was thinking escapes me (not to mention the fact that I'm sure a blind child could handle a lizard just as well as a sighted one), but I will give myself credit for imaginative thinking when it comes down to identifying those people who comprise my community!



Moving Forward for Yourself & Your Family



What Other Parents are Saying:



"I don't think my husband and I have been on the same wavelength since our daughter was born. It seems like one of us is always up, while the other is down. Sometimes I think he's being unrealistically optimistic, and sometimes he thinks the same of me."



-From Children with Visual Impairments



Not everyone goes through the grieving process, and not everyone who does go through it goes through it in the order I have described nor even always has each part of the process. It is an entirely individual experience and is as valid in its differences as it is in its similarities.

This can be particularly difficult for married couples who find themselves on opposite ends of the grieving process. The incidence of divorce in families with disabled children is exceptionally high, partly due to the obvious stressors and pressures of having a disabled child, but also partly because both parents may be experiencing the grieving process in unique and individual ways and unable to offer each other the love and support they need. Dealing with the grieving process head on will not only benefit yourself and you child, but also your marriage!

The reason for this article's title is to help you look at where you are in the process and how you are behaving towards yourself. Get a coffee in a quiet moment and think—When did you last show yourself any tenderness, any charity? Try to be more gentle with yourself; there is no "blinding catharsis," but acceptance will come. Just when you least expect it, you'll get what you least expect!