Cat, Ponch... what do you think about this?

Mahonri · Senior Bucketkeeper

Cat, Ponch... what do you think about this?

Cat Herder · Understander of unimportant things

Mahonri,

Yes, I visit Meridian from time to time. Haven't recently.

This article is pretty accurate. A little on the simplistic side, but that is okay... it is written to the audience of those who are not directly involved in caregiving of a mentally handicapped child 7x24.

We have been very blessed to be in two wards (since the time our son has been a toddler) that have been very helpful (or at the least as helpful as ward members were capable of). Those who are autistic are not dumb. They are actually quite smart. They just have a sort of disconnect between their brain and the outside world, so they are not able to process input and other stimuli the same way "normal" people do, and hence are not able to interact with the world around them "normally".

They can sense when others feel uncomfortable around them and when others care about them, and respond accordingly... just as "normal" people do. But, just because they are Celestial candidates does not mean life with and for them is going to be Celestial. It is hard on a family, particularly if the family does not receive any or receives insufficient help from their ward family. This is only amplified exponentially if the community mental health program does not offer and provide services that will meet the needs of the family / individual.

At church, it is incredibly hard to describe what a family goes through and how they feel unless you have been there. There are feelings of being less capable, less righteous, why us, social progression is over, the center of everyone's behind the scenes pointing and whispering and platitudes, and a whole host of other things that are as individual as the family.

In our current ward, we have two children that are autistic, a couple of members who are wheelchair bound (one a youth, the other adult w/ other handicaps as well), and at least two other children who have severe mental / developmental handicaps. We've had children with Downs Syndrome in the ward too. And, we have a host of children and youth with learning disabilities. So, as a ward, we're not "shocked" when it comes to there being special needs.

Mahonri, if anyone (teachers, doctors, or you and your wife) even suspects one of your sons may have a form of autism, get him evaluated. There is literally a whole range of conditions that range in severity and manifested symptons. Don't know how old your son is, but one of the keys to helping him and your family out is "early intervention". Some services from the community mental health are dependent upon the age of the child when the condition is diagnosed... wait too long and they are not afforded to the family / individual.

One of the first (and perhaps the hardest thing) is to get past the stage of denying that maybe there is more going on than just being "slow". Acknowledging doesn't make it go away, but it does change the perspective and attitude one takes towards the child.

Anyway, getting him evaluated and finding out what is actually going on, you can learn about the condition, what is typical to observe in behavior for it, and how to handle it and work with him to effectively modify behavior. Also, and I know there are plenty of people in the Church (and perhaps on this or other LDS related boards) who feel it is wrong to medicate, you and the proper medical professionals can find the right mix medications to help him.

Poncho can share her perspective later.

Thanks for pointing out the article... and don't be afraid of having your son thoroughly evaluated. Whatever the outcome is, it changes nothing for the worse... he is still your son and he hasn't changed into some sort of pariah or monster... you just now have something new to learn about in being the best possible parental stewards you can over him. And, should he be so lucky as to fall into that category of Not Accountable, well, you're in good company with the rest of us who wonder what we did to merit the awesome task of being the mortal guardian for such an individual!

Poncho29 · Senior Bucketkeeper

We can totally relate to that article Mahonri. Totally.
Our son is 16, almost 17 and he does pretty good at church now, but that's only been in the last several years. I asked Cat this morning why he thought that was and we decided it was a combination of the fact he is on a good mix of medication now that works for him, the fact that he has been "taught" how to behave more apprpriately now and maturity.

But, when he was 5 like the son of the author of the article it was a whole different story.

It is true, many people are sympathetic to families with children with autism, but most have no clue how to help. Kids with autism can be intimidating, even for the parents.
The key however, is to somehow get into their world. And, it doesn't have to be complicated. Take an interest in what interests him, shake hands with him, make eye contact, smile, walk around with him, play with him.
We have always told people that if a person goes out of their way to make friends with our son, he will latch onto them. He has actually always been a very loving and affectionate child, and he responds to being touched, which isn't always common in autistic children. Because in his mind, he responds to those that respond to him. If you ignore him, he'll ignore you. If you like him, he will like you. If you are irritated at him or are afraid of him he'll respond by acting up more, because he gets agitated when he gets bad vibes from other people. Considering our son cannot speak that is the only way he knows how to express what he's feeling, by his behavior.

We have been fortunate that our son has had two excellent Sunday School teachers in his life that helped set the stage for him being able to "get through church." They set up his own Primary program and routine so he had something to look forward to and he knew what was going to happen.
The periods of time inbetween where he didn't have a consistent teacher did not go unnoticed by him and he responded accordingly.
He currently doesn't have a teacher who shows up consistently, but I think as I said earlier he has learned what is expected of him at church. Part of that has to do with the fact that he has a caregiver who part of her job has been to help "train" him how to behave appropriately in public.
If it weren't for her and all she has done for him and for us, he'd be much harder to deal with.
We have been truly blessed.

That doesn't mean he doesn't act up anymore, but his incidents are fewer and far between.

All I can say, if anyone here knows anyone with an autistic child, particularly at church and you see them struggling, ask them what you can do to help. Or better yet, just jump in and do it.
They will be grateful beyond words, and it will be more rewarding than you can imagine.

Oh, and Mahonri, get your son evaluated. It will be more than worth it. Even if he isn't autistic and is "just slow" as you put it, he will benefit from any kind of help that may be available and it will improve his life and your family's life.

I have a nephew who was socially introverted and spent all his time playing computer games and his parents denied anything was wrong for years. Now that he is an adult and they are coming to realize that he has Asperger's Syndrome (a higher functioning form of autism) they are finding it is now much harder to receive help for him. When it could have made all the difference for him if they had done it when he was a child.

Randy · Senior Member

Our bishop really wanted to help. He asked me what the ward could do to help. The only thing I could think of was for someone to baby sit once a year so that my wife and I could go out on a date.

The bishop thought that once a year was too infrequent, and worked hard to try to find someone. We didn't get upset about the fact that he couldn't, because it was really too much to ask. That was four years ago, and it would have been great to have had four dates with my wife between then and now, but we do what we can.

My wife doesn't go to church much any more, so it's been maybe a little too easy to just let the boy's church attendance slide too. But last week he did ask to go to church with me and seemed to like it just fine, but didn't seem to be too interested in a repeat yesterday.

We are very fortunate that we got our son into an excellent program when he was preschool-age. Had that not happened, at that time, things would be a lot harder now than they would have been. I completely agree that early intervention is extremely important.

Poncho29 · Senior Bucketkeeper

Randy, I think that's a shame that your Bishop could not find a single person to help you get away for one lousy evening with your wife. Are you telling me that in four years you and your wife have not a date alone together? And no, I don't believe it was too much to ask. IMHO. But, good for him for at least wanting to help.
It's even more bothersome to me that your wife feels she can't go to church much.
Doesn't that bother anyone in your ward?

That bugs the stew out of me!

I guess I shouldn't criticize, but it's like I said in my earlier post. Most people are intimidated by kids with autism and most don't try to understand the nature of the disorder.
Kids with autism need not be something to shun or be afraid of.
I understand that people don't know how to react to someone with autism or how to respond, but it really isn't as daunting as people seem to think it is.

I don't know if your child is anything like our child, but we used to tell people that when he is home in his familiar environment he is usually pretty easy to take care of.

rayb · Hot Air Balloon

I don't even know what Autism means... heck... I might be autistic and I'd not even know it.

--Ray

Cat Herder · Understander of unimportant things

Mahonri,

FYI here is an article just found today...

http://www.foxnews.com/story/0,2933,307997,00.html

Randy,

Sometimes you got to force the issue. Squeaky wheel gets greased, ya know.

If you folks are in a normal sized ward, I'll be frank... that is totally unconscionable for no one in the ward to be willing to watch your son so you guys can get some respite, be it one evening a year, one evening a month, or even for an hour on Sundays so you two can both get spiritual nourishment. A lot of people decry when people talk about Church providing social benefit, but for parents and siblings of an autistic / other handicapped individual, it is essential to their well-being emotionally as well as spiritually. Your wife may feel like going to church more if folks got off their backsides and helped you guys carry your burden once in a while. You and her may need to do some educafication of ward members, and that can help remove the fear or hesitancy.

If your son or another family member was terminally ill in a bed, I'm sure people would find a way of being there to sit with the individual so you two could have some respite from the situation...

shame, shame, shame on your ward...

Okay... I'll be quite now... I don't know your situation, if this is your only child, how old he is, or his condition, or the two of your's hesitancy of feeling like you are burdening others...

rayb · Hot Air Balloon

Okay. I read the article. I'm pretty sure I'm not autistic. :) We have a family in our ward whose son has Aspergers. I guess we'll have to invite them over again, and see if we can't talk with them about their needs.

--Ray

Randy · Senior Member

Thanks, Cat Herder and Poncho, for your support.

nitasmile · Senior Member

Randy- sorry no one helped. Maybe they didn't ask the right people.
If I were in your ward, I would offer to help. However, I can respect that people would feel afraid if they don't know how to help, as so many have that "fear" of the unknown. Maybe if you did a mini "training" or something, some would feel more comfortable. While it wasn't w/autism, awhile ago in our ward we had a man who needed 24 hour supervision due to a brain injury. His wife had started back to work, the ward was providing help/supervision to him while his wife was at work. While lots of people helped, apparently some sisters were apprehensive about staying there as they didn't know what to expect. To me, he was pretty easy to watch. But I can see why some were afraid.

Cat wrote: "Those who are autistic are not dumb. They are actually quite smart. They just have a sort of disconnect between their brain and the outside world, so they are not able to process input and other stimuli the same way "normal" people do, and hence are not able to interact with the world around them "normally"."

That is so true- this past summer, I went to visit my sister (who graduated w/a degree in special ed this past year). She has spent the last three years working at an awesome camp in the East that serves those w/autism. Each week the camp has a different age and "level" of functioning of campers attend. Each week would culminate w/a "talent" show. So the week I went to visit her, they had the talent show for the higher functionning. I was really impressed w/some of the talents they displayed. One person could recite all kinds of sports statistics. Another one had an amazing ability to remember people's birthdates- in fact a couple months after the camp ended, he emailed my sister on her birthday to wish her happy birthday. Two campers recited the Ten Commandments for their talent. Another one designed a mini version of a "game show". Another one who never talked, per my sister, got up and played a beautiful melody on an instrument.

But going back to Randy's dilemna, can you try again? Maybe do a little training- help the people know what to expect and to feel comfortable helping your son. Find a few people to help? You deserve it and it is not out of line to expect a little help every now and then.

nitasmile · Senior Member

Randy- One other thought- please don't take this wrong- I mean it more generally than to you specifically. But do both you and your wife truly want someone else to help relieve this burden? I know someone, as single person, who is currently caring for an elderly parent. This person has thought out very well how to assist the ill family member. However this person is reluctant to ask for help-- wants to wait til "the end" is closer and it could be a few years. It is a situation where the parent needs 24 hour physical help and supervision. So while this person has some relief, this person isn't wanting to "burden" the ward at this time, this person has really thought things out and doesn't wish to use ward resources to early, and so this person doesn't wish to "burden" families so doesn't wish to ask them for help, as they need to be w/their family. This person does feel ok having single people help watch the family member for respite purposes, and so is not asking for help unless someone else offers.

In another situation, I hear of parents who don't trust anyone but their spouse to stay w/their kids. So if they don't get time out, maybe that is a bit their own doing?

OK, I am pretty sure that isn't your situation but thought I'd say it anyway.

Poncho29 · Senior Bucketkeeper

Sometimes all it takes is that one special person to help. In fact, it is probably better to limit it to a few select people because one thing an autistic child needs the most is consistency. And, it doesn't have to be often. Any amount of help or support that is offered and administered for the family or individual in need is SOOOO greatly appreciated.

It is hard though. Until you know your child will do ok with whomever is taking care of him you end up worrying the whole time whether or not he's behaving for that person.
It can be a process trying to find a person or persons whom you can trust, but it ends up being worth it in the end.

The other couple in our ward who have a 9 year old autistic child got very little help or support from the state they lived in before, so what little bit of help they have received here they have been thrilled to have. We look at them and their son and it reminds us alot of what our son was like at that age.

I don't know what's harder, having a low-functioning non-verbal child like ours or a high-functioning autistic child. Each comes with its own unique challenges.

I think you opened a can of worms with us by starting this thread Mahonri!

Sorry!

-- Edited by Poncho29 at 19:59, 2007-11-05

Randy · Senior Member

Our situation is always more complex than can be expressed in a few words. Additionally, I don't always want to share everything.

But I suppose that I should have added that I withdrew the request to the bishop after several months because our boy's behaviors deteriorated to the point that his mom and dad could barely manage him. I really would have worried about him being with someone.

Now he is much nicer. No egregious behavior. But now he's just huge.

Nita, that is really nice of you to wish you could help, but if you could see how big he was now you might pause. He's seventeen now, and we desperately hope he's decided to stop growing.

Poncho29 · Senior Bucketkeeper

You're right Randy. Every situation is much more complex than can be expressed in a few words.
I understand what you're saying. It's like I said before, sometimes if you do find someone to help you with your child oftentimes you spend the whole time worrying whether or not he's behaving.

Our son is almost 17 too. I mentioned earlier that he doesn't act up nearly as often anymore, but when he does it can become much more violent. He is tall and I hope he quits growing here soon.
He is thin as a stick but he is strong as an ox. There have been times when he has been a danger to others and himself. We've had more than our fair share of battle scars. It's definitely not easy.

I don't know if your son is on medication or not, but it helped our son immensely. I used to not believe in "medicating" a kid for difficult behavior. But, I soon discovered that it was help to him and our salvation. Sometimes one has few choices. When I realized that he was in pain much of the time because of too much sensory input it became a good thing.

Too bad we don't live near each other, we could help each other out and we could also refer you to people who are good at providing respite to parents with autistic children.

Cat Herder · Understander of unimportant things

I'd simply like to add my testimony to that of my wife... and yes, it is a testimony. There was a time when I was in some denial, feeling that because of a blessing he received from a General Authority, the condition would be lifted in short order. I know that he will be healed of it, but my timing is doubtfully the same as The Lord's, so I determined that maybe it wasn't His will that the promises of the blessing be fully realized until after mortality.

When you are open to learning about the conditions and symptoms, you come to a whole new understanding of what the individual with autism suffers from. I didn't like the idea of medication either (because, well medication is bad and blah blah blah... you know, all the stuff everyone always says without any real basis for holding the opinion). But, what we learned made sense to us... we understood why he would go balistic when it rained and when it would stop and only the drops of rain water off leaves and such were left... or why he would scream when certain types of common household sounds would occur... or why he loves certain types of music and can't stand others... or why he gets upset when a CD skips or there is white noise from the TV... or why if he hurt himself, he would be crying but hit the injured area again. It was all related to his condition and the way his brain processes sensory input. Getting on the proper mix of medication has helped his brain better prioritize some of the sensory inputs. As a result, it has calmed him down, and has had some positive impact on his ability to cope with changes to his routine and being in places he is not familiar with.

Anyway, back to the sensory input thing... as to the rain and water dropping, we read a book written by someone who claimed to have had severe autism and was miraculously healed by a combination of several treatments (doesn't work for everyone). This individual indicated that to her, rain sounded like machine gun fire. A neuroligist explained to us that to our son, a pinch of the skin on the arm that would hurt to us most likely feels like a feather brushing up on the skin... which explains why he would repeat hitting an injured body part after injuring it... he was finally feeling something that registered with him and it was giving him more input that he was lacking!

Battle scars... oh yeah, we both have them... as do his three sisters and younger brother. And he has his own set of them as well that he has self-inflicted.

But, the best way to help folks understand that it is safe to be around your son is to have your son around them. It can be embarrasing at times, but let them see you work with him when he is having a rough time. Let them see what he is like at his worst as well as at his best. Let them know what his triggers are for both good and bad behavior, and how often the bad behavior gest triggered. Let them know what to do to mitigate the situation when things go bad. Let them know everything you can. And, don't be afraid to give your son as many blessings as you want to help him.

PollyAnna · Senior Bucketkeeper

What a beautiful thread... I am learning much, that I should have taken the time top learn in the past. It means a lot that you would share your situations and helping me (and other) to understand this issue better... We have 2 autistic children in our ward, although to me they didn't seem as severely affected as some children I had heard of... However from the descriptions here I can see that perhaps church may not as big an issue for them, but something else might be.

Sweetee has trained to be a teacher with her specialization in Special Education, primarily working with autistic children. Her brother is mildly autistic and she is very sensitive to the challenges all families face with this handicap. It has been a great blessing to get to know my future daughter (we don't use the in-law part... it seems really silly, since she is now as much a part of our family, before the wedding, as she will be later...) Anyway, I have the greatest feelings of love and respect for families that struggle with some of these concerns. I wish there was more I could do to actually help you all that have children facing these challenges, however I WILL remember to pray for peace for your children and please know that your "words" WILL go towards helping ME to help those in my ward, I know the parents will appreciate it too, even if it is only that one more person understands a few things better.

Randy · Senior Member

I'm a big believer in medication.

But it was a huge challenge to find the right dosages.

If only they all came without side effects.

But as I said before, he is much better behaved than he used to be. We can thank the drugs for that.

The things that set him off have changed. Because although he tends to like Disney animated features, the Jungle Book (when he was little) always put him in a frenzy. Just the mention of the name of the video would set him off. We wondered if there was some noise it was making that he didn't like.

But now he likes it.

????

-- Edited by Randy at 13:21, 2007-11-06

Poncho29 · Senior Bucketkeeper

Tell me about it Randy.

Getting the right medication and the right dosage can be a nightmare.

Our son went through a medication change a couple of years ago because the meds that were working for him didn't seem to be doing the job anymore. They figured it was because he was getting older and the hormones he was experiencing because of puberty probably had something to do with it.

But the process of changing his meds was horrible. The doctor had him taper off one med too fast and increase the dosage of another too fast and well... we don't like to think about that summer.

Yeah it's interesting that what used to agitate him doesn't anymore.
Our son always enjoyed Beauty and the Beast. He liked Chitty Chitty Bang Bang too except for this one part. We always had to fast forward it or he would just get up and do it himself.

He used to love to watch Jeopardy and Wheel of Fortune as a little kid, but the applause on them drove him nuts and every time the wheel stopped on Wheel of Fortune he'd get upset too. We finally had to stop watching them. Now he could probably care less if they were on.

PollyAnna · Senior Bucketkeeper

Randy this is perhaps going to sound silly to you... but our very big-bear-huggie RM who adores his sister always thought that this one thing, which she joked with him about since they were both VERY little, was funny... Even early last summer it was funny to him... But since he got engaged it stopped being funny, and in fact it makes him instantly ballistic-irritated... It has NOTHING to do with his engagement... or Sweetee... It's not mean... it's just weird and we can't figure out why it's status changed from funny to irritating. Several of us have asked if he knows why... He doesn't... rolleyes

So we ALL just avoid doing THAT anymore...

We are hoping that once the stress of wedding plans goes away...

Our 17 yr old recently started to do a couple really weird things, lttle nervous habits... things that he never did before... it seems to be connected to his physical/emotional stress of graduating early in Dec and trying to get all his credits in line for that... it is driving one of the other kids in the family bonkers... But we are all being patient and hoping once his stress level goes down that thesw "twitches" will go away...

To some extent I think we all do some stuff that is "unexplainable", but when there is a "condition" there is probably more reason to think about the "whys"...??? Stress is not easy on anyone... I can only imagine what it does to one that is autistic.

nitasmile · Senior Member

Randy wrote: "Nita, that is really nice of you to wish you could help, but if you could see how big he was now you might pause. He's seventeen now, and we desperately hope he's decided to stop growing."

True, pauses might be needed, but I'd still hope to help. I think the take home answer is to find those in my real life realm to help when needed. For whatever it's worth, I've been dragged across the floor by someone larger than me (a person who needed 1:1 due to behavior issues), I've been punched in the face and I've been bitten. Definitely caution and care is needed.

As Poncho mentionned, there are companies that specialize in providing special respite care. Maybe that would be a possibility. If you have a local nursing school or special ed program in your area, then perhaps you could find someone willing to work at a lower rate than the companies.

Either way, best wishes.

Randy · Senior Member

Nita, good for you, and thank you. If everyone were as helpful as you, this world would be a much better place. I hate to think of the abuse you've taken, though.

PollyAnna · Senior Bucketkeeper

Hubby is a nurse... He works with people that are in extreme pain usually, and often are at the end of their life... He works with a lot of hospice patients... Sometimes his patients lash out... he has been hurt inadvertently... and he is not a tiny guy (over 6 ft and about 190 lbs)... but he would keep doing what he does forever if possible, because to see someone that he works with find a moment of joy in the midst of the suffering... Doesn't matter what that joy is... it just takes a few moment every month to keep him going... I have the greatest respect for those like hubby and Nita that work with the elderly and sick... What they do is just as important as what you parents of autistic children do... So Nita, you keep up the good work...

And to Randy, Cat, Arbi, Ray, Jase, Dilbert, Roper, and all the fathers that I am leaving out, because there is no way to name you all... May Heavenly Father abundantly bless all faithful earthly fathers like you for their love and care of family... Faithful fathers cannot be replaced by ANYTHING... As a mother I truly thank ALL fathers... but especially the ones that hang on when times are so hard... I pray for that kind of father to be the FIL someday of MY children... What you are becoming is so much more than you can project... that I know...

Cat Herder · Understander of unimportant things

Hopefully this link works... saw this video report at Fox News.

Our son is in one of these sort of programs.

Okay, well the link didn't work, but here is an associated article... For the video, look for the video titled Healing With Horses under the Health Video section.