The subject of autism is still going strong, and as so often happens today's letters seem to have a theme. Over and over again, parents lament that although their families would get love and sympathy if their children were suffering with a dreaded disease, families who have children with autism are invisible.

Let them tell it in their own words:

I have an eight-year-old with autism.  It is like living in Hell some days.  It was nice to hear that someone's situation is just like mine and I am not alone.  Yesterday I had to walk out of the church and cry for five minutes before I could walk back in.  

I was crying, or tearing up at church almost a year ago when the Primary president asked me if I was going to make it through that day.  I was so mad and I had a million things I was going to go and say to her like, "How would you feel if your second son stopped talking and decided to beat the crap out of you every day?"  I sat in Sunday School stewing and thanks to the tender mercies of Heavenly Father, a girl in our ward shared an article about a family with special needs. Needless to say I did cry and cry after that.

So the questions are, "Why is church so hard?" and "Why can't the members of the ward be more understanding?"  It is to the point where my husband doesn't like to go; we feel like “The Gong Show” there.  

There is a family in our ward with a member with leukemia.  Yes, that is hard, and I have lent a lot of support, but nobody sees my trial like theirs.  Is it because they can't relate?  Cancer is something they understand.  

To tell you the truth, I think cancer would be easier.  There's an end to cancer, one way or another. There's no end to autism. I have never had a meal brought in, never asked if I need anything.  Sometimes it would be nice, but now I am so edgy about it all, I don't think I would let anyone in.

In the August 2006 (I think) Ensign , they had an article about special needs in the Church.  There should be an aide provided for the boy at church so that he is involved and the parents can get a break.  My son doesn't go to class at all; he just wanders the hall and such.  I wish they would take him and let him try, but the aide is doing his best.  

The funny thing is they only call men to help Davis , because he is "hard" and I laugh because I am a girl and I do it 24/7.  But I think you try to tell people your situation and hope for some help. Expect nothing and everything is just appreciated after that.

Our family isn't invited to others' homes or to small family gatherings in the ward and that hurts — especially for my other two children.  That would be nice to just be included instead of left out and really made to feel different.  

I find this has made me more sympathetic to others' trials. I find I am not afraid to approach someone when something bad has happened to their family, when others don't know how to react.  Life is hard and sometimes it has nothing to do with choices we made; sometimes things just happen.  

Here is what I have learned.  We all know we are going to have trials in this life, and yet when the trials come, often we are surprised.  Often times we are living our life and doing all that we should, we aren't making obvious bad choices that create trials in our lives, so we have them brought to us in other ways.  Then we are mad.  

At first we were just glad to know what was wrong with Davis . It was almost a sense of relief. Then a year later and such, it was like, wait, this isn't going away.  Then you get mad and question everything and you are already so tired.  It isn't like Down syndrome or a physical limitation; it is all encompassing.  It is brutal. There is nowhere to turn but to pray, and that doesn't make it easier.  This is a lifelong trial; it won't resolve itself in a year.

I don't know what the solution is.  Maybe in the church trainings and such, this could be brought up.  Maybe there could be more teaching, or a talk in General Conference.  People love to have a quote or doctrine to turn to but don't realize it is right there in the scriptures — “love one another as I have love you.”  That is all that is required.  I find I am becoming friends with people I wouldn't normally associate with, but they are more patient and try to understand.  I have scared off many visiting teachers because they don't know what to do with us.

I am so glad to see this and I hope you can make people more aware of the needs of families who are different.  I did read and sorry I don't remember where (I read everything, I feel that is all I do) that a ward rallied around a family and finished a room in the basement for the child to play and be safe so the family could get some respite.  I have also heard of ward members coming and taking shifts working with the child to help them to learn and grow.  It is hard, no denying it, but we as a wards are supposed to be a family and rally around those in need.  I hope I am always there to help others, but I know we all get caught up in our own lives.

How do parents survive?  I don't know.  We have tried counseling, hiring more therapists, going on small vacations without the child, but you always have to come back.  I wish there was an easy answer, but there isn't.  I hope my family survives this.  We have decided not to have any more children and focus on what we do have.  I take the majority of the load, so my husband can handle life.  I hope we survive.  That is all I can say.  What is harder than the ward not supporting you is having your own family avoid you.  That is more damaging.

I have many stories and some uplifting ones too.  I just hope others out there aren't as left out as we are.  I know people love it when we aren't there so sacrament meeting is quieter and they can feel the spirit more. That doesn't make us feel loved.

Heather McKinlay
South Jordan, Utah

Heather, thanks for painting a picture of what your family is going through. It never occurred to me that a family wouldn't be invited to ward members' homes and that the other children in the family would suffer because of that — but only because I'd never stopped to consider it. Your letter is really going to make people think.

I'm glad your trial has made you more compassionate. Trials tend to do that to a person. I also thought you said it all when you wrote, “Expect nothing and everything is just appreciated after that.” I hope that in the future, you can get some respite in your own family situation, and that you'll be able to find the support of others in your neighborhood and your ward.

Unfortunately, Heather's situation isn't an isolated incident. Read on:

Unfortunately, Joney's story is probably more common than we would like to admit. It was because of the ignorance and treatment we received in dealing with our own daughter that I decided to go into Education with Special Needs. Over the past 18 years I have seen the unresponsiveness most have toward those with special needs.

I just attended Cub Scout day camp with one of the boys that is higher functioning. In our "Den" at camp there were two autistic boys and one boy with Down syndrome. They were not placed together on purpose; it just worked out that way. I happened to know all three boys, and although they were all very different, the autistic boys were actually less functional than the boy with Down syndrome. Despite this, leaders at the camp were very tolerant and accepting of the boy with Down syndrome, but the reaction to the boys with autism was remarkably different. Their behavior was not accepted.

I know with our own daughter because she looked "normal" people didn't see her as special needs and when she would have meltdowns we as parents were judged, harshly.

Although The Church of Jesus Christ of Latter-day Saints is set up as a volunteer church and those teaching in nursery and Sunday School do not have training to deal with the issues of special needs kids, it seems that there is also a certain amount intolerance. This baffles me because it goes against every teaching of the Church and the gospel. It saddens me to see members have to stay home because they know there is not a feeling of acceptance at church. When we do not help these special families we are teaching intolerance, and this is not what our Savior would want.

I personally have gone and sat with special needs children during church services to give aid to the families of those children so they may attend their meetings and have a chance to feel of the spirit.  These special children should be welcomed in every meeting with open arms. Our typical children have so much to learn from giving service to the "least of these." After all, these spirits are going straight back to Heavenly Father. When they have a tantrum it is because they cannot make us understand what they are feeling or what they need.

Members and leaders who are not helping those children and families are also missing an opportunity to teach tolerance to the members of the ward and stake. It seems very easy for people to go to an area of devastation to give assistance while ignoring the immediate needs in their own backyards.

It is very sad to see families suffer at church, but I know what they are going through because I have lived this as well.  This is not our Heavenly Father's plan, and members of his church should be ashamed at the treatment or lack thereof to these special children and their families. After all, our Savior searched out those that were in trouble to give them aid. We as members of his church should be doing the same.

Ashamed in Mesa Arizona

Thanks for an eye-opening letter, Ashamed. I'm sure the leaders at your Cub camp didn't realize they were extending love to the boy with Down syndrome and not to the boys with autism. We human beings can be very unaware at times. I hope these letters serve as a wake-up call to all of us, so that we can do better in the future.

Read on for yet another reader's experiences:

When we see a person who is in a wheelchair in our community, we may offer lend a hand as they approach a closed door.  We know if we see a person with a white cane when we are driving, we need to watch out for that person who is blind.  If a child is by himself and crying, we go offer help.  These things we know what to do and how we may help.

When we see an autistic child having a hard time at church and see a parent dealing with that situation, we leave them alone.  We don't want to interfere.  We wouldn't know what to do, either.  And we don't want to be in the way or make things worse.

Last summer, I worked in a group home for autistic children.  I learned a great deal.  One thing is that each person is unique and has unique challenges, fears, likes and dislikes.  There is not a “one size fits all” for autism.  There are some things that are the same. Each is a beloved child of our Heavenly Father.  Each person is here on earth to learn. A willing heart, a Christ-like attitude, and a humble willingness to learn of each individual's special needs, wants and desires will help a person willing to be taught how they can be of service.

Go to the family and let them know of your desire.  Maybe spend some time in the home getting to know that family and how they work together.  Each family is unique.  Some may be delighted with your wanting to help; others may not.  Take your cue from them.

If a group of people at church decide they want to lend assistance, maybe the family could be invited to hold a workshop on their son/daughter/brother/sister.  I remember we had an autistic child in our Primary and we had a person specially called to work with that student.  He liked to come to class with the other students, but the large group setting in opening exercises was overwhelming for him.  We adapted and tailored his class to meet his needs.

We worked with the family and learned how we could work with this young man.  With his mom's suggestions, we worked on things at church that he was also working on as a social skill at home and at school.  We were part of a partnership, working together.

There may be people who are willing to help, but don't know how.  Offer the opportunity to learn what to do.  The bishop could be asked to call special assistants who would then be trained.  We attend Teacher Development classes and missionary training classes.  Why not training to work with special populations?  There are lots of books on autism as well as information on the internet.  One of my favorite websites is www.wrongplanet.net, which was started by a person with Asperger's Syndrome. 

We have a daughter with Asperger's and have appreciated her Young Women leaders and Primary teachers who have learned how to be supportive to her.  She has a testimony and a great sense of humor.  She is a joy to be around. 

Let's all be willing to step out of our comfort zone and lend a helping hand.  Who knows ? we may just need a bit of help ourselves someday.

Mary McLerran
Salt Lake City
(originally from Charlottesville , Virginia )

What a great letter, Mary! I loved how you wrote about the Primary teachers being in a partnership with the child's parents and concentrating on the same concepts in Primary that were being taught at home.

I was called to be the aide for special needs Primary children in our large ward about two years ago.  As such I interacted with the Primary president, teachers, and parents, on behalf of children who needed accommodations to function in the Primacy setting.

As instructions from Salt Lake clearly state, children of all abilities are invited to come to Christ through Primary worship.  Several of our special needs children have autism of various degrees. We have needed to call one-on-one aides or modify the standard Primary program to fit these children. Part of my calling was to recommend accommodations and also to provide ongoing support for both teachers and parents in moving the child to more complete participation. 

As one mother pointed out, her child has autism; he is not an autistic child.  This is a big, difference.  We try to see the child first and not define him by his disability.

When I was first called to my position, my wonderful Primary presidency understood this concept and worked to included all abilities in the Primary setting. With this support we were able to include all ward children in Primary experiences. With their recent release, the new presidency is not willing or maybe able to accept the challenge of including all ward children in Primary and has made it impossible for me to fulfill my calling.  The children I serve are slowly returning to "walking the hall" with mom or dad. 

I know it is possible to include children with a variety of needs in Primary and see them grow in the gospel because we had done it here in Washington in very large ward — but without complete support and understanding of all leadership it is impossible. 

Special needs aide for Primary children in Lacey Stake  

Thanks for letting us know how much a dedicated ward leadership can accomplish, Aide — and how quickly things can deteriorate if leaders drop the ball. I hope the new leadership in your stake will catch the vision of ministering to the one, as President Monson admonished us in April conference. You never know how much of an effect even one kind person can have on a person who is alone and in need.

Dealing with a severely autistic son has been a challenge beyond anything I could have comprehended.   Our son is 24, and even now there are days I wonder how I will get through the next five minutes. 

We have lived in several wards during his lifetime.  The first bishop strongly suggested that we not bring him to sacrament meeting because he had a habit of banging his head on the benches then screaming.  So we didn't.  For years and years.  Looking back, I think that was the wrong approach. 

After not having any experience with attending church by the time he was a teenager, he needed two years of preparation to get to sacrament meeting.  We had walk-throughs of the church, mock meetings in the chapel, which a family (I will love them forever!) helped us with. 

In the beginning we had to drag a rocking chair and all kinds of entertainment to achieve his being able to stay through one meeting.   He didn't always stay for the whole meeting, but he did come.  Gradually, the rocking chair went, then the scissors and crayons.  These days we take him to sacrament meeting routinely, and most of the time he makes it through.   We sit in the very back row of the overflow, spread our chairs apart to give him plenty of room, and for the most part we are able to concentrate on the meeting.  He takes the sacrament and appropriately passes the trays to us, is quiet during the prayers, and announces, "That was wonderful!" after musical numbers that touch him. 

We have had different bishops and each has approached our son (and us) differently.  The bishop we have now has given our son a priesthood blessing during an especially difficult time, announced his birthday from the pulpit, and always shakes his hand.  For years I felt a certain bitterness about what others in the ward could or couldn't, would or wouldn't do, but peace came on that front when I realized that they are human and imperfect just as I am.  If I am overwhelmed by the needs of my son, if I have trouble comprehending him, others will too.  They are human. 

Being bishop or Primary president does not automatically equip someone to deal with the extremes of human behavior.  I ask for simple things.  I call a visiting teacher and ask if she will pick up a prescription for me, expect others to deal with a few unsettling noises (especially since sitting so far back is an option not a necessity for most people) ? that sort of thing.  I am grateful when someone speaks kindly to my son, or shakes his hand.  I appreciate of those who remember to put our names in the temple. Tolerance and kindness in the small things go a long way. 

Right now we have a situation that goes like this:  The meeting ends, our son stands up smiling.  He waves and calls, "Goodbye, people!  Goodbye, people."  For him this represents a step forward ? he is expressing a connection to the members of the ward.  The difficult part for me is that no one smiles, waves, or says goodbye back.  It hurts, but I push the hurt away.  Let God judge their hearts.  I have enough to do just to monitor my own behavior and attitudes. 

Experiencing such extreme circumstances has taught me to rely on the Lord.  I have often thought of the survivor of the Willie-Martin handcart disaster who stood up and said that it was in their extremity that they felt the hand of God and the support of angels.  Until medical science is able to provide some actual relief, we each do the best we can ? survive from day to day, love ourselves and our children, and fight the bitterness that can so easily take over our lives. 

A Parent

What a good example you set for all of us, Parent! My heart almost broke when I read about your son calling, “Goodbye, people!” — and nobody calling or waving back. I can only imagine how sad this makes you.

I hope we will all recognize our own behavior (whether good or negligent) in the letters we read here today, and will make improvements where they are needed. You're right — we're all human. We all have blind spots, and we all have areas where we can improve.

This topic was started by a grandmother. Our next letter is from a grandfather whose granddaughter is not autistic, but who grew up with similar neurological problems:

I can empathize with the writer; our daughter has a child (girl) with neurological problems, and seizures, caused by a bleed on the brain shortly after she was born. Our granddaughter is now 29 years old.

My daughter has gone through much the same, extremely difficult experiences as the writer, and it has been a 24/7 life of constant worry and watching. Along with extreme pollen and food allergies that cause our granddaughter to become very irritable and difficult to control; and constantly taking her to doctors in an attempt to help her with medications, and rushing her to the hospital emergency rooms so many times we couldn't count them, it's a wonder my daughter hasn't lost her mind. No one can really appreciate what these mothers go through. It is an extremely hard cross to bear.

My daughter has to determine what kind of mood our granddaughter is in before she takes her anywhere — whether to the store, to church, a restaurant or any other place. When they plan on going on a family trip, they have to determine if there will be a hospital nearby, in the event she goes into a seizure (which can stop her breathing).

If they are in public, whether in a store, church or wherever, they will not allow her to disrupt others. They will immediately take her out, and if necessary, take her home. Our children have been taught all their lives that it is extremely rude to annoy others in public.

I, along with many others, have been complaining for years about people that allow their kids to talk, scream and cry, and bang on the pews and chairs in church and in restaurants and in other public places — and run around like wild animals in stores, pulling on clothes racks and getting their hands all over the clean clothes. These can't all be kids with emotional problems — although they may grow up to have “social” problems, because of their lack of discipline.

Even though I sympathize with the writer, I don't feel it is the Church's responsibility to have to take extraordinary measures to furnish babysitting, or other means, to facilitate the parents being able to attend their meetings. After all, how would the babysitter be able to then attend his/her meetings? Perhaps the answer would be to have their home teacher, or other priesthood holder, visit the family and serve sacrament, or take turns attending meetings. There are always ways to accomplish this.

Even though I sympathize with the writer and her burden, I hope she understands that other people will help her to lighten her burden, but there is only so much they can do. I think it is very important that she shouldn't think she is “The Lone Ranger.” Most people feel much better when they realize they aren't being picked on — that other people are in the same boat, and many are actually much worse off.

Wayne
Huntington Beach , California

Thanks for writing, Wayne . Your letter underscores that having an autistic child (or a child with any similar disorder) is a challenge without an end. I don't know how people like your daughter get through the day. They deserve every consideration we can give.

I agree with you that the Church shouldn't take what you called “extraordinary measures” to care for children with behavioral disorders. These measures should be done ordinarily, in the course of our church lives. In most full-sized wards, there are people going without callings who could be called as aides or to serve in other capacities. As you pointed out, not everyone is in a position to serve. However, in the body of the church we have such varying talents and gifts that a little creativity and a lot of inspiration on the part of ward leaders could give people like your daughter a much-needed reprieve from the trials of their daily lives.

Today's letters end on a happy note, because two of our readers have written in to tell of success stories in their wards. Here are two ways how it can be done right:

This article in Meridian Magazine really caught our attention.  Here is our story:

My wife and I are the parents of four boys.  Our oldest son is 31, married, and has three children of his own.  Our youngest son is also healthy, is 26, and has been married for two years.  They are both college graduates and served two-year missions. 

In between we have twin boys, Richard and Walter, who were diagnosed as autistic a month before their third birthday.  They are now 30 years old, are severely autistic, still live with us at home, and continue to be a huge challenge.

Life for us is far from normal.  Our twins are a lot like extremely mischievous two-year-olds in many ways, except they are 5' 7" and weigh about 185 lbs.  Coping with them at home is a constant battle.  We have to keep everything locked that we can possibly lock — our bedroom door, the pantry, refrigerator, laundry room, closets, and so on.  We have childproof catches on all the cabinets and drawers in the kitchen. 

We can never leave anything out unless we are guarding it constantly.  Otherwise, it would soon be in somebody's mouth or trampled in the dirt in the backyard. 

For us, even common tasks like going to the bathroom when we want to are not always possible.  Many times I have come home from work and found my wife in the kitchen preparing dinner.  The first thing she often says to me is, "Ooh, ooh, can you guard the kitchen for a minute so I can go to the bathroom?" and goes racing off.  Once she started preparing dinner, she couldn't dare leave the kitchen even for a minute; otherwise there would soon be dirty hands in the food she was preparing, dishes carried off or knocked on the floor, or even more serious mishaps. 

Richard seems to have a fascination with those little liquid soap dispensers.  We can't leave them by the sink where they would be convenient for washing our hands.  Otherwise, we would soon find the little plastic pump in Richard's mouth and the contents of the bottle spilled on the floor or carpet somewhere. 

My wife keeps trying to find high, inaccessible places to put her potted plants.  She often finds the leaves chewed off and dirt from the pot in somebody's mouth or spilled on the carpet.  I could go on and on.

Walter talked a little bit at around 2 1/2 years of age and then stopped talking.  Richard has never really talked.  Every once in a great while we think one of them will say something that sounds like a recognizable word or phrase, but it is always so fleeting that we are left wondering if they actually said it, if it was just our imagination, or was just a coincidental combination of sounds out of all their babbling.  Both boys are very vocal (read lots of yelling and a loud assortment of noises).  (I once commented that Richard is doing his part to further the advancement of science.  He keeps discovering new decibel levels that scientists didn't know existed before.)  Fortunately, over the years, both boys seem to understand more of what we say to them.

Both boys require assistance with the most basic everyday tasks — dressing, bathing, shaving, washing hands, tying shoes, cleaning their behinds, and everything else.  They are gradually, very slowly, learning to help a little bit with some of these tasks, but still require very close guidance and prompting.

Both boys banged their heads on the floor a lot when they were small and still have head-banging episodes to this day.  Walter wears a hockey helmet 24 hours a day and Richard wears a football helmet most of the time.  Both boys sometimes use their helmets as battering rams when they get upset.  About twice a year we hire someone to come to the house and repair the holes in the walls from the last time.  I sometimes refer to our guys as "the hole-in-the-wall gang."  Someone once asked me if I was getting proficient at patching holes in drywall.  My response was, "Let's just say that we have a lot of calendars on the walls."

Potty training?  Oh, I'd better not go there.  We've been working on that for 30 years.  Let's just say that your wildest imagination probably wouldn't do justice to reality.  A number of years ago I bought one of those steam carpet cleaning machines and it has been very well used.

Oftentimes, after meals, I look around at our dining room and remark to my wife that it should be declared a federal disaster area.

Several times, mainly when our twins were smaller, one of them escaped our attention and wandered off.  More than once we found one of them standing in the middle of a traffic lane of a busy street with cars honking at him.  Once we had a helicopter circling the neighborhood with a searchlight while a search party was looking for our lost kid.  We got acquainted with a lot of policemen.

Both boys also suffer from a fairly severe seizure disorder.  They have been to many neurologists and they take piles of medication to try to control their seizures.  It works the majority of the time.  Sometimes it doesn't.

On the brighter side, both boys attend day programs for handicapped adults for several hours each day.  We have two people who come in the morning to help give the boys showers, dress them, help them with breakfast, and help send them off to their day programs.  We also have two home trainers that come for about three hours in the afternoon to work with the boys.  They try to teach them to do simple tasks like take out the garbage and water the plants in the yard.  They are also trying to teach the boys to use an electronic communication device.  In general, the people we have met who work with the handicapped are very patient and loving.

About our experiences at church:  for many years I often thought that if I ever were to write a book about our church experiences it would be called Life in the Foyer.  From the time our twins were about four years old it was becoming obvious that trying to sit with them in the chapel during sacrament meeting was not an option.  They were just too difficult to control and were too loud and disruptive.  They would ruin the meeting for everyone else. 

So, week after week, for years, our family sat in the foyer and we tried to get out of the meeting what we could.  It was frequently hard to hear the talks.  There is usually constant traffic in the foyer with people coming and going.  Often there would be groups of people from another ward standing around, having loud conversations, not realizing that we were trying to get something out of the meeting that was going on in the chapel. 

There was one period of time for about a year when our ward met in a building where the speaker in the foyer didn't work about 90% of the time.  We would go there, sit in the foyer for 70 minutes, and leave without knowing what any of the talks were about.  Fortunately, the deacons were good about bringing the sacrament to us.

Our twins stayed in the Primary nursery well past the usual three years of age.  At about age 5, the Primary decided that they were just getting too big to be with the little kids in the nursery.  The Primary created a special class just for them.  Several loving teachers worked with them over the years.  Oftentimes that loving attention consisted of simply sitting with and squeezing one of them who was having a rough day to prevent him from hitting and hurting himself.

Our twins have a cousin who was born two days after them.  She is perfectly normal — actually above average in many ways.  She was baptized on her eighth birthday.  It was rather difficult sitting in the service for this beautiful child and all the time thinking how, just two days before, our twins had turned 8 and they were not baptized.  We held out hope that someday a miracle would happen and we would see a major turnaround in our twins.  At around age 9 or 10 we had the ward clerk mark their membership records "Not Accountable."

The various bishops we have had over the years have always been very supportive of our family situation.  When our twins turned 12, the Primary transferred stewardship for them over to the Priesthood quorums.  The ward designated a classroom in the building just for our boys.  They stay there during the Sunday School and Priesthood/R.S. hours.  The Elders and High Priest quorums send one person each to stay with our boys during each of those two hours.  They pass around sign-up sheets. 

Recently, the Elders quorum assigned a young fellow, who is a prospective elder, to be the coordinator and make sure there is coverage for those two hours.  The brethren play music, read to them, and sometimes take them for walks around the building.  Fairly often, a class of Primary children comes to visit them briefly and sing a song for them.

Many, many Sundays, one or both boys is just too agitated (screaming, head-banging, and so on) to even consider trying to take them to church.  On those occasions my wife and I take turns going to whatever meetings we can get to.  For stake and ward conferences, we usually arrange for a babysitter so that we can attend our meetings in peace.  That also gives the priesthood brethren a break and nobody has to miss any of their meetings.

For several years now we have been listening to sacrament meeting in the bishop's office.  Our building has a wireless sound system with little pocket listening devices for the hearing impaired.  We keep one of those listening devices and a set of amplified computer speakers in the bishop's closet.  Each Sunday we get out the set of speakers and plug the listening device into them.  That way we are able to pipe sound from the chapel into the bishop's office.

I don't get to talk to or visit with other members of the ward between meetings very often.  I'm usually completely occupied with taking the boys from the bishop's office to their classroom, taking one or both to the bathroom, getting them settled in their room, waiting for the assigned brethren to show up, or doing other tasks.  We sometimes get some wide-eyed stares, mainly from children from another ward, when we are going from one room to another, but this has been going on for so long that most people are well used to our boys' bizarre behavior by now.

When our twins were about 21, a relative suggested that maybe that should receive a patriarchal blessing.  We really hadn't given it much thought until then.  We talked to the patriarch about it and at first he didn't think it would be appropriate.  Later, after giving it some study and thought, he decided that it would be appropriate.  We talked to our bishop and he was very supportive and quickly wrote out a recommend for them.  I sat in a chair and held these big guys on my lap as tightly as I could while the patriarch gave them a brief but beautiful blessing.  I suppose we shed a few tears.  We really feel the Spirit each time we reread their blessings.  I guess some peoples' missions in life are simpler than others.

Well, that's our story.  We hope it will help someone who is struggling with a similar challenge.

Charles & Alba Bailey
Tucson, Arizona

P.S.  My wife doesn't do computers, but she wanted to add a few comments:

For many years our boys were just watched during the two hours (S.S and R.S.).  Then, the Lord called a Primary president who has a degree in special education.  Since then our ward has had a special class for other members who are mildly disabled.  Also, the Primary children take turns to visit our twins.  They sing, bring pictures, and talk about a gospel principle.

We're so grateful for all the love we always received from our ward family.  We pray Sister Haff's daughter will eventually get some help.  It's the only way to survive this difficult trial.

I am so glad the two of you wrote in to tell about your experiences, Charles and Alba. For one thing, you told how one ward has dealt with a difficult situation for many years. I would imagine that if we heard from some of the ward members who have taken care of your boys, they could tell some real tales. They could also tell us how much helping “the least of these” has blessed their own lives.

The thing that struck me most about your letter was the gentle sense of humor you have managed to develop and retain during all these long years. Although it may sometimes — or even oft-times — seem that you are fighting a losing battle, it is apparent that your sons were sent to people who would be the best possible parents for them. They have truly been blessed.

Read on for today's last letter:

I am the mother of a teenager with autism.  She was quite a handful in her younger years. Fortunately, I worked at a university that has classes and intervention programs for children with autism.  My daughter was placed in everything my university had to offer — speech classes, a variety of parent-child classes (attending with typical children), as well as the parent-child classes for special needs children.  She was placed in our typical preschool with an aide until she was old enough to attend the preschool for children with autism. The list of interventions goes on and on. 

Nowadays, with autism being so prevalent, there are even more interventions being offered through the community and government programs.  Public schools have great programs for children with autism.  The local Autism Society is also an excellent resource.

As far as Church is concerned, the ward family needs to be made aware of how to help families with special needs children.  There are instructions on our Church website regarding this.  And we can always call Church headquarters for assistance. 

The bishop, home and visiting teachers — they were my first line of defense!  My child was the first special needs child in our ward, so everyone “practiced” on her. She was placed in Sunbeams with a special aide when I received a calling.  She was what I called my “wild child,” but everyone was so kind and patient — even when she was at her wildest. 

Now, she is an incredible 19-year-old young lady and loves her Church calling and attending Institute. She is independent — as long as she doesn't have any streets to cross! — and has talents that I would never have believed possible.  All the wonderful interventions and programs she had helped tremendously.  But the greatest intervention, of course, is Heavenly Father. 

What I once thought of as my punishment — having a child with autism and related disabilities — has turned out to be one of my greatest blessings.  She brings happiness, smiles and love to everyone.  Was it easy rearing her?  No:  fear for her future, her health issues, losing her speech (which came back at 4 years old “with a vengeance!”) behavior problems, and so on — what an emotional roller coaster! Am I able to relax now? No — she is sharp enough to know she's different and can't date and interact as other people do at her age.  But in spite of this “glitch,” she is basically a happy, well-adjusted, very kind and loving young lady. 

When I held her as a just-born baby, the Spirit told me that she will be a Relief Society president one day.  That's why when she was diagnosed with autism I was more devastated than I probably would have been.  It was as if Heavenly Father said, “Never mind.”  However, she has already been Beehive and Laurel president, so I know when the Lord says nothing is impossible — well, I believe!  Father is preparing something wonderful for her, and her patriarchal blessing is also a great source of guidance and hope in that regard.

Rearing any child — typical or not — is a wonderful/scary blessing.  All we can do is our best, knowing that Father is with us all the way. There's a poem that equates someone expecting to go to Italy (having a typical child) and ends up in Holland (having a special needs child), only to realize that Holland has its beauty, too.  Well, I felt as if I were going to Italy but ended up in Auschwitz .  But if I do half as well in being a pure, obedient child of God as my daughter is, I will end up in the Celestial Kingdom with her — and that's all that matters.

Just one other point:  please don't say “autistic child.”  We never want to define who they are with what they have.  That's why I say, “My child has autism.”

Mom of a terrific kid

Thanks for writing, Mom! It was terrific to end today's column on some happy notes.

Look for more letters on the subject next week.

Until then — Kathy.

Watch your thoughts; they become words. Watch your words; they become actions.
Watch your actions; they become habits. Watch your habits; they become character.
Watch your character; it becomes your destiny.

Unknown Source