Nurses General Nursing Article

What to say to the parents of special needs children

I was born and raised in a country with a warm climate, and as fate would have it, the beautiful woman who became my wife didn’t. To speed this along, I found myself moving pretty much to the other side of the planet to a new country, with a new climate and a new language to learn.

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What to say to the parents of special needs children

The only job I could get before I could converse in this new language was to go and work with violent, self destructive autistics. It was the best job in the world- I was lucky enough to work for one of the most charming and spiritual people I have ever, and possibly will ever, meet. Of course there were bad times (when over a period of a few months he bit his tongue off) as well as good times (when he some how managed to communicate his appreciation for the help and assistance we gave him over and above his sever autistic limitations) and it was during these good periods of his life that I began to have these dreams.

I remember that I dreamt the same dream seven or eight times. I could never remember the specifics, but the theme was always unmistakable. I was working with the guy as some sort of training as I was going to have an autistic child of my own.

During this time of the re-occurring dreams my wife fell pregnant with our first born son, who I refer to as Hurricane One with the masses. Normal birth followed by a normal upbringing until we took him for his two year health check up. I asked the nurse about his speech- or lack of it- and was told that the delay was quite normal due to the fact that I spoke one language to him and his mother another. It wasn't until we were back in my home country, seeing a doctor within the health system there, that the penny dropped. Two months later he had his diagnosis- he was autistic.

Not long after Hurricane One became an elder brother to, naturally enough, Hurricane Two. Another routine birth and upbringing. After experiencing the same lack of speech development we took him to the specialist, and not long before his second birthday he also received his autism diagnosis. Two Hurricanes, two autistics. Why is that?

The question why is that is very different to the question why me. Academia says that autism is a hereditary condition, which has some merit as my wife has an acutely autistic brother. Online forums suggest that autism is a result of immunization, which also has some merit as Hurricane One's autistic behaviours increased markedly after his year two shots. But was this an evidence-in-fact or was it just a co-incidence? I don't now. Nor do I really care. Maybe the spiritual explanation is the best- that the souls of both my sons performed unimaginable acts of service in their pre-life experiences together, and that in order for them to remain brothers in this life they were given bodies requiring special needs...

I am very fortunate that I have never been angry enough to ask the why me question. That's because such a question is futile. The unfortunate thing is that I have met many other parents of specials needs children who, even after five years, still torment themselves with this question. Is this some sort of punishment? No, you didn't. Did I smoke too much weed and drop one too many acid trips in university? Well, you probably did but that's not why you now have special needs children. So what did I do wrong?

In my experiences it is the spiritual answer that has had the most lasting effects. Maybe it's not a case of what you did wrong but what right was done to you. Maybe you were the principle recipient of the unimaginable good works that you special needs child performed for you in your previous lives. Maybe you chose to be their parent in this life as a return act of selfless gratitude. Or maybe I am wrong, but in my experience it has the most powerful effect in explaining why we have special needs children to parents overwhelmed by their situation.. And unless you are a neuroscientist, it is definitely the easiest.

So how can this apply to nurses, or health care workers who through their occupations are sometimes in contact with special needs children? As one of those parents, you provide us a great disservice if you show us pity. Of course it is easiest to say what we want to hear- that you are very sorry for our situations- but in the long term it is more of a hindrance than a help. What we want to hear is different to what we need to hear.

The best thing to say if you ever find yourself in a situation where a parent is coming to terms with the fact that they have a special needs child is to say something like this: 'Wow, you must be a very strong person on the inside...' When they look at you with that puzzled look on their faces, continue with something like, 'special needs children aren't given to just anyone...'

Variations of these two sentences have the power to change the very attitudes of parents with special needs children, especially if they are told this soon after diagnosis. It creates strength where pity and guilt once stood, and provides a totally new and positive direction for parents to focus on, right when they need it the most.

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thetaterelate

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Article by: thetaterelate, Father of two special needs boys

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mamamerlee

mamamerlee, LPN

949 Posts

Specializes in home health, dialysis, others. Has 35 years experience.

A very thoughtful perspective. My husband has Cerebral Palsy, and from what I know of his family, there doesn't seem to have been the 'why me/us' stuff. There was a child that was expected to develop as far as he could, and he has been totally independent. He is 49 now, and you know there wasn't much of "special needs" stuff back then. His mother insisted that he attend regular schools, learn to ride a bike, become self-sufficient.

He does not have a severe case, is ambulatory, and has worked all of life. He occassionally lapses into an annoyed state of mind when he has severe muscle spasms. He is now a full-time student at a major university!

There was a TV movie many years ago with Tyne Daly, as the mother of a Downs Syndrome child. She gave a speech towards the end of the movie with an enlightening comment. It was something like - You booked a trip to Italy but the plane stopped in Holland. You wanted to see Rome, now you get to see Amsterdam. You can learn to enjoy Holland.

It is always a traumatic event to learn that your child has behavioral/mental health issues, major disease issues, unexpected circumstances. When I meet any of these people, I usually ask them what would help them, if they are already 'in the system', or something like that. And I always tell them that they will have the strength to do whatever needs to be done.

LoveMyBugs

LoveMyBugs, BSN, CNA, RN

1,316 Posts

Specializes in Pediatrics.

Those two sentances and that you as a patient advocate can teach the parent to become thier childs advocate because that is what the parent will have to do.

I have a high functioning autistic son, and dealing with the education system has been a battle, getting medical treament has never been an issues but when it comes to education, once the parent gets over the shock of the diagnosis they need to learn to advocate for thier child.

Your article reminded me of a poem I found regarding special needs children, I don't know who the author is;

MOTHER'S CHOSEN BY GOD

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit

This year, nearly 100,000 women will become mothers of handicapped children.

Did you ever wonder how mothers of handicapped children are chosen.

Somehow, I visualize God hovering over earth selecting his instrument for propagation with great care and deliberation.

As He observes, He instructs his angels to make notes in giant ledger.

"Armstrong, Beth, son. Patron saint, Cecelia.

"Rudledge, Carrie, twins. Patron saint...give her Gerard, He's used to profanity."

Finally, He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "no matter. I can fix that. This one is perfect. She has put enough selfiness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child who is less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word." She will never consider a "step ordinary."

"When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint" asks the angel, his pen poised in mid-air.

God smile. "A mirror will suffice."

eigermil

eigermil

2 Posts

Very, very, very,.......very well put. More power!

bigbub3000

bigbub3000

105 Posts

Keep in mind that some parents, and other relatives, of special needs children do not consider their relatives to be gifts or blessings. Too many parents of NORMAL kids don't, either.

Try using words like that to parents of someone like this. YMMV, of course.

http://dir.salon.com/story/mwt/feature/2003/09/27/autism/index.html

Wow, that's quite an article. I understand the writer's suffering at least somewhat, as a friend has 3 children, 2 of whom are autistic. It is absolutely overwhelming for her. Her relatives take care of them off and on, to give her a break. Husband is deceased (suicided while on an anti-depressant).

Very devastating for her. True, some parents do not view disabled kids as difficult or as burdens. I truly admire them and figure they're made of heavenly material.

What does YMMV mean?

I have come to believe that there are lots of things humans aren't meant to comprehend. They just are and we have to just deal with them and try to do our best.

skyandsydneysmom

skyandsydneysmom

57 Posts

Specializes in LTC, Alzheimer's patients,Cardiac.

Wow....what a beautiful article! We are lucky to have our "special needs" children in our lives. Everytime I hear "you are the best mom in the whole world" is enough for me. My son may have a list of issues but he is the kindest, sweetest, most amazing person! I am also reminded how lucky I am when I walk into the children's hospital with him and see that it could ALWAYS be worse :)

RXtech

RXtech

104 Posts

The best thing to say if you ever find yourself in a situation where a parent is coming to terms with the fact that they have a special needs child is to say something like this: 'Wow, you must be a very strong person on the inside...' When they look at you with that puzzled look on their faces, continue with something like, 'special needs children aren't given to just anyone...'

Variations of these two sentences have the power to change the very attitudes of parents with special needs children, especially if they are told this soon after diagnosis. It creates strength where pity and guilt once stood, and provides a totally new and positive direction for parents to focus on, right when they need it the most.

You know, as the parent of a special needs child (a 13yo boy with autism) I can't say that I have ever found comfort in the idea that I was such a special person that I was given this special child. It always strikes me as slightly patronizing. I am not "special," I am a parent, just like any other parent. Placing me on a false pedestal just makes me feel more isolated and set apart. I don't believe that I was "chosen" or that my son is some kind of angel sent to teach me and the world a valuable lesson. His condition was most likely a chance combination of genes, and we are dealing with the challenges it presents as best we can, as any loving parents would do.

Another reason this kind of praise rings false with me is that, unfortunately, not all special needs children are fortunate to be "given" to mothers (and fathers) who are well-equipped to care for them.

I realize that many parents do find comfort in such words. But, just like we can't assume that a patient will find comfort in religious sentiment, we shouldn't assume that they will feel comforted by being called "special."

Just a slightly different perspective... :)

gfcfnina

gfcfnina

8 Posts

Specializes in Pediatrics. Has 1 years experience.
You know, as the parent of a special needs child (a 13yo boy with autism) I can't say that I have ever found comfort in the idea that I was such a special person that I was given this special child. It always strikes me as slightly patronizing. I am not "special," I am a parent, just like any other parent. Placing me on a false pedestal just makes me feel more isolated and set apart. I don't believe that I was "chosen" or that my son is some kind of angel sent to teach me and the world a valuable lesson. His condition was most likely a chance combination of genes, and we are dealing with the challenges it presents as best we can, as any loving parents would do.

I realize that many parents do find comfort in such words. But, just like we can't assume that a patient will find comfort in religious sentiment, we shouldn't assume that they will feel comforted by being called "special."

I absolutely agree with you. I have a moderate functioning 5 y/o son w/ autism and everytime I hear that I'm special or strong because I have a child w/ special needs I do get very frustrated...I know they are trying to be kind, but I keep thinking the the reciprocal of that statement-> Since I'm so strong and special b/c I have a special needs child, you must not be.

It's not a good blanket statement to make to parents w/ special needs kids, I would highly caution anyone against using it w/o creating a therapeutic relationship 1st to know whether that kind of statement would be helpful or not.

I appreciate hearing the positive things and progress that others see in my son. sometimes I'm too close to the situation to see the small improvements right in front of me and need them to be pointed out to me, esp on the really hard kinds of days. THAT is much more meaningful than some kind of patronizing remark about my parenting skills and abilities. :twocents:

rph3664

rph3664

1,714 Posts

Yeah, what's the alternative? Ditto single parents.

I don't like seeing mothers of special needs children, especially those with autism ( - clears throat - Jenny McCarthy :o ) presented to the world as goddesses. They're just moms.

It's like someone with, say, MS or cancer being applauded for their courage. What else are they supposed to have?

BTW, I have known several men who single-parented special needs kids, and all of them were accused of pursuing custody so they wouldn't have to pay child support, which happens a lot with custodial fathers of normal kids as well. :mad: It was because the mothers didn't want the kids, or in one case that comes to mind was an alcoholic.

pezamistik

pezamistik

51 Posts

I think another point needs to be made... Leave religion out of it unless you know the religious beliefs of the family. If there is any uncertainty at all, do not mention god, angels, past lives, "being chosen" and whatever else may be considered offensive to someone's personal beliefs.

I can tell you first hand, the last thing my sister and I wanted to do when my nephew was on a vent, was explain our religious beliefs (or lack there of) to the PICU nurse who insisted this was "God's Plan."

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