Autism Mom

[Absolutely]

Christina Adams writes in the Washington Post about being an autism mom. (http://blog.washingtonpost.com/onbalance/)

[supposedlysusan]

Thanks for the link Don. Her life sounds a lot like ours. Fortunately, our marriage has been fortified, but just by the grace of God. 80% of marriages fail when there is a child with autism in the family.

[sevenstw1]

Thanks for the link Don. Her life sounds a lot like ours. Fortunately, our marriage has been fortified, but just by the grace of God. 80% of marriages fail when there is a child with autism in the family.

Wow! Eighty percent? I knew it would was high but I didn't expect it to be that high.

It has been rough in our house but we are making it work. We have mostly good days and some rough ones. My Dh has the job of keeping me balanced in my working with the boys. He falls on the spectrum as well (not officially diagnosed) so he can give me an insight I wouldn't otherwise have. Of course, now understanding that he has ASD explains some of the earlier trials and tribulations of our marriage. Now I can say "Okay, I better understand why he said/did that."

Thanks for sharing the article, Don.

Amy

[supposedlysusan]

....My Dh has the job of keeping me balanced in my working with the boys. He falls on the spectrum as well (not officially diagnosed) ....
I didn't know that. I have been unofficially dx'd with AS too. What a revelation for me. It definately helps me understand Emma Jean especially. It is both an asset and a stumbling block to parenting my girls. :crazy:

[sevenstw1]

We've inquired about an official diagnosis but the consensus seems to be. . .What's the point? He is living life successfully and is doing well in his military career. What would it prove?

However, like I said, it explains so much about his behavior. Of course, thirty years ago, he would have never been diagnosed. He was just thought quirky or strange.

I can see how it would be a stumbling block in parenting. It's interesting to see how many parents of children with ASD or AS see the traits in themselves.

[supposedlysusan]

We've inquired about an official diagnosis but the consensus seems to be. . .What's the point? He is living life successfully and is doing well in his military career. What would it prove?

However, like I said, it explains so much about his behavior. Of course, thirty years ago, he would have never been diagnosed. He was just thought quirky or strange.

I can see how it would be a stumbling block in parenting. It's interesting to see how many parents of children with ASD or AS see the traits in themselves.
All of the above, LOL. I know that my two little acorns didn't fall far from this oak tree. There are a lot of "quirky" folks on dh's side too. The doctor who dx'd the girls is who suggested that I might be on the spectrum. As I learned about AS and girls/women and made my revelations known to my mother she all but confirmed it as well. It has been a relief to me. It changes the way I view past and my present. I always thought I was defective. Now I know it! LOL. Not really, but I realize that there is nothing all that terrible about me, I am just wired differently. I guess for me that has lightened a heavy load that I've toted around all my life.
What does your dh think about the possibility?

[SarahK]

Thanks for the link. I've requested her book from the library. No signs yet, but I'd like to know what the potential is.

SupposedlySusan & Sevenswt1 - you have my highest admiration. I wish you many more balanced days.

[sevenstw1]

My DH seems okay with it. It explained a lot about his childhood for him so he's okay with it. I wish I could ask his mom and dad about him as a child but they are both deceased. It would be interesting to know how he was from a parent's perspective.

[sevenstw1]

Thanks for the link. I've requested her book from the library. No signs yet, but I'd like to know what the potential is.

SupposedlySusan & Sevenswt1 - you have my highest admiration. I wish you many more balanced days.

Thank you! My family is very lucky because our boys are very high functioning so we have it very easy in so many areas of their lives. We have also been blessed to have received services and support from some great teachers, therapists, and doctors along the way. This has made our journey so much easier.

Amy

[sfoster]

I admire all of you Mother's (parents) of Special Needs children. Autism especially can really take a toll on families. Last year my daughter quit her job to work with her son (autistic) as much as possible while waiting for his therapies to be set up. I had been watching both boys a few days a week when she worked, but let her know that I just couldn't give Cody the time he needed one on one with me. So she stopped working and we worked together all summer. She was able to get back to work in the fall, 2 days a week. I'm the Grandma (but I'm not yet 50) and was exhausted trying to do it all (part time at that).

His therapies are full time and we have people in and out of the house 5 days a week, drive him to ST and OT 2 days a week, and now we have him in preschool 2 mornings a week (1/2 hour drive also, 1 hr. for me). THIS is a full time job, but seeing him progress has been worth it all. But there is no way I could do it myself, and I'm so glad that I can help my daughter and her family. My husband will comment that her house is messy, or her yard needs to be picked up. I tell him give her a break she is doing the best she can right now, I remind him when I have the boys at my house how little I can get done. He does admit that when they are here it is CRAZY at times. Two 3 yr. olds by themselves is a handful, add autism to the mix and its exhausting, but as I have said worth it all.

We took them out to dinner the other day and Cody acted up just waiting to be seated. He insisted on sitting down right there, NOW, and he had to wait for the lady to seat us. Then he didn't want his booster seat, cried about that and wanted a different fork. As wonderful as he is doing he still has many issues to deal with on an hourly basis. I gave the boys snacks while waiting for dinner and asked Cody to talk quieter (he's getting better at this). We drive home, drive down the driveway and he cries when I open the garage door, he doesn't want to go inside the garage (we've been parking outside for awhile and now we will have to slowly desensitize him again). I'm sort of glad when this happens in front of DH because he forgets the challenges at times. It puts things in perspective for him.

So YEAH to all of you MOMS and DADS on this journey- I REALLY ADMIRE YOU!!!!!!!!!! I'm grateful to have these sweet boys in my life and enjoy them so very much. My part time involvement is so much easier, I get rest.
Take care, Sue

[supposedlysusan]

I wish I could ask his mom and dad about him as a child but they are both deceased. It would be interesting to know how he was from a parent's perspective.
That's unfortunate Amy. Are there any close relatives from his childhood?
Interestingly, when we were looking at Autism for Abby the only thing that correlated between Abby and myself as a child was the toe-walking. However, when I started looking at AS in the very young (esp. girls), every time I called my mom to go over the typical atypicals she'd exclaim, "Oh you did that! Don't you remember [fill in the blank]?" The only big difference between me and the Bean is that I was one of those little professors who pretty much spoke from the cradle in full sentences. Bean has struggled with semantics and pragmatics, even dyspraxia.

[supposedlysusan]

So YEAH to all of you MOMS and DADS on this journey- I REALLY ADMIRE YOU!!!!!!!!!! I'm grateful to have these sweet boys in my life and enjoy them so very much.
YEAH to you too Sue! Your family is extra blessed to have such a proactive, involved and supportive grandmother. And so is the ASD community at large. :clap:

[SonSet]

I've read the article. Is 15 months around the age you start to notice something different? What did you notice different?

[sevenstw1]

I'm the Grandma (but I'm not yet 50) and was exhausted trying to do it all (part time at that).


Sue,

I think it's great that you are so involved in Cody's therapies and such. I am sure your daughter greatly appreciates all the help you give. Supportive grandparents make all the difference. So many of my friends deal with grandparents who either criticize everything or just stay in denial and say "They will outgrow it."

Kudos to the grandparents, also!

Amy

[sevenstw1]

I've read the article. Is 15 months around the age you start to notice something different? What did you notice different?

For my boys, it was before age one when I noticed they didn't talk/make verbal sounds like they should. We enrolled in EI around 18 months and received an unoffical diagnosis just a few months later. I had also noticed that they didn't wave goodbye to anyone, would have periods of blank staring, and would appear deaf at time but also clearly hear train whistles that I could barely hear. They had a lot of tantrums that I now know weren't typical tantrums. As babies, they didn't like to lay with their heads on your shoulder like most infants. I didn't put all of these things together to suspect autism. After being told that the Speech therapists suspected autism, it all kind of "clicked".

I recently watched the videos we made of them from birth until now. It was around 11 months of age that I could pinpoint the changes in them. This a little earlier than most parents report seeing the signs.

Amy

[supposedlysusan]

I've read the article. Is 15 months around the age you start to notice something different? What did you notice different?
Fifteen months is often when atypical development either begins to surface or becomes noteworthy enough to distinguish them from their peers.
HERE (http://www.autismresearchcentre.com/tests/chat_test.asp) is the CHAT or CHildhood AuTism rating scale that can be downloaded.

[sevenstw1]

That's unfortunate Amy. Are there any close relatives from his childhood?


His older sister is 9 years older than him so she could probably give some clues but of course they would be biased as only an older sister could be towards a little brother. :crazy:

I do know that he didn't speak until around 4 and that at some point during his academic career, they tested him for mental retardation because he would only grunt in class. It turned out that he actually has a very high IQ and was bored in class. He mainly struggles with social situations and will always choose to avoid them as much as possible. Even having people over for dinner is hard for him.

He always says he has learned to imitate and copy people so that's how he gets by. He is very articulate and well spoken. He struggles with relating to people who aren't on his level. His eye contact is very good because it was drilled into him in High School.

It's been interesting to read about ASD/AS and say AHA! That's perfectly describes my DH.

[supposedlysusan]

I do know that he didn't speak until around 4 and that at some point during his academic career, they tested him for mental retardation because he would only grunt in class. It turned out that he actually has a very high IQ and was bored in class. He mainly struggles with social situations and will always choose to avoid them as much as possible. Even having people over for dinner is hard for him.

He always says he has learned to imitate and copy people so that's how he gets by. He is very articulate and well spoken. He struggles with relating to people who aren't on his level. His eye contact is very good because it was drilled into him in High School.

He and I sound A LOT alike, although I didn't grunt in class. I lectured. :rolleyes: I started reading psychology books on human behavior when I was about eight or nine. I was so puzzled by people. As for eye contact, I fake it. I find it's unbearable, but it is a necessary evil so I make my girls use it to gain information. It is pretty hard to read nonverbal cues if you don't at least scan faces, KWIM?

[Jane]

I was excited to read your accounts of receiving diagnoses (formally and informally) as adults, of ASD. It has been my theory for years that autism has always been around, just not diagnosed that often for our own and past generations, and I doubt that it is linked to vaccines at all.

The Irish people are closely related genetically, like most island peoples (my grandmother never travelled more than 50 miles from her home, and my great- grandparents were first cousins), and there are many people I know in Ireland that fit the high-functioning ASD description, yet manage to live successful lives.

Another similarly genetically close group is the British Royal Family: Charles has always had difficulties socially, and I wonder if he is on the spectrum. Not to say that genetic closeness fosters ASD, just that it becomes more obvious in a group that has such ties, IMO.

My nephews both have autism, each on opposite ends of the scale, and I can listen to stories of relatives now deceased and see some relatives still living, and I see startling resemblances in certain behaviors to the boy with the milder case. I would imagine that in past generations children with more severe cases would have been institutionalized, which is why they are not seen as adults out and about in the present world, but the other children just made their way as best they could.

With all the emphasis on ASD being a disability today (because it seems children are all required to be exactly alike in the school setting), could it be that ASD is not a disability at all, but rather just a different way of thinking, not any less valuable and, in fact, very valuable for the unique view of the world that people with ASD bring to the table?

I am sure that the professions that don't require a great deal of spontaneous social interaction, such as engineering, science, acting, research, medicine (surgery and pathology spring to mind), etc., contain their fair share of people on the autism spectrum.

I was just reading about the actor Anthony Hopkins the other day, how he memorizes a script verbatim, and becomes very upset if a director tries to change the script or encourages ad-libbing on the set. That just struck me as a red flag. I have read that Keanu Reeves has difficulty jumping in and responding at interviews that aren't scripted-- yet both do very well in the acting world.

It just makes me wonder if we should be celebrating the different perspectives that people on the autism spectrum bring rather than focusing on trying to make them all march to the same drummer...

What do you think?

[supposedlysusan]

I agree with a lot of what you posted Jane. I have my doubts about the hidden horde though.
I think there is likely a link to vaccines, but maybe not in the way it's been looked at so far. But that is neither here nor there.
I definately don't advocate cramming square pegs into round holes. You're bound to lose too much peg that way. That said, I do not support the movement to promote autism as culture.
More compassion, less narrow perceptions of what makes a person count as a contributing member of society? YES!
Allowing autism to be used as an excuse for totally counter-productive, anti-social behavior and then demanding that the world around them accomodate that? NO.
From where we stand now, having traversed the road we have so far, I no longer seek to "cure" my girls. Unfetter them from the ties that autism has bound them with? Absolutely.

[Jane]

More compassion, less narrow perceptions of what makes a person count as a contributing member of society? YES!
Allowing autism to be used as an excuse for totally counter-productive, anti-social behavior and then demanding that the world around them accomodate that? NO.

I hear you there, and agree that good manners and the art of functioning in society should be absolutely taught and encouraged, but without the square peg being chipped down, to borrow your very good analogy. :)

[sevenstw1]

As for eye contact, I fake it. I find it's unbearable, but it is a necessary evil so I make my girls use it to gain information. It is pretty hard to read nonverbal cues if you don't at least scan faces, KWIM?

Eye contact can be difficult for people not on the spectrum but it is important to be able to read the cues. For our boys, if they will look into my general direction (at my face) but not my eyes, I am happy. I want them to be able to hear what I am saying or use the other facial expressions but not be stressed out by looking directly into my eyes. It's a fine line to walk but we seem to be making it work.

[sevenstw1]

With all the emphasis on ASD being a disability today (because it seems children are all required to be exactly alike in the school setting), could it be that ASD is not a disability at all, but rather just a different way of thinking, not any less valuable and, in fact, very valuable for the unique view of the world that people with ASD bring to the table?



I do believe that it should be recongized as a different view of thinking and echo Susan's sentiments in her previous post about not using it as an excuse for anti social behaviors. However, we know that children with ASD learn differently than other children. Some teachers are great at understanding that ALL children learn differently and are the best teachers to have because of it.

However, there are teachers that aren't as open minded and these are the teachers where it's important to educate them and have the modifications and accomdations in place that the children need. Having the schools accountable for these things through the IEP process ensures that the child receives an equal educational opportunity. It shouldn't give them an advantage over other children but give them equal opportunity.

Also, as you know, people on the spectrum are all affected in different ways and have different abilities. My boys have an excellent chance of living independently and being very successful in whatever they chose to do. I have friends with children who may never live independently or have their choice of a career. These parents are doing all they can to give their children the most indepent future possible but also understand that may mean living with their parents for the rest of their lives. But...they are doing everything in their power to help their children reach their full potential just like any other parent. It's not easy but they do a great job of it.

Amy

[sfoster]

I can look in Cody's family tree and see some antisocial members. I can also see some very bright individuals. But I can tell you that Cody who is bright and struggles socially also has many other issues. His jumping, hand flapping, sensory issues (hair cutting, face washing, ear checking, tooth brushing, nail clipping) are major issues for him. He also has social deficits, difficulty listening in a group setting, and major language problems. It isn't just that he sees the world differently, he finds stressors that the average person never notices. My SIL thinks that he is just like other 3 year olds, he's not. He has abnormal fears, attention problems, and so much more. I was so glad that when we went over to her house 2 weeks ago, he ignored her. She called his name and he never acknowledged her (she was right in front of him). I speak up and say that is his autism, to let her know this isn't imagined, or simpler then she thinks.

We went out to a restaurant with the boys on Sunday. Cody begins to cry, because he wants to sit "over there" NOW. He doesn't want to wait. The hostess does sit us down, he doesn't want his booster seat, he wants a different fork-he cries! Fussing over the simplest things. We went at 4 so it wouldn't be busy but we still had people staring at us, as if we didn't know how to discipline this "spoiled" child. That isn't it at all, he gets scared, he's unsure, he's confused, he is stubborn, etc. all part of who he is now. I feed the boys snacks while waiting for their meal, and they both are pretty fine. We drive home and I stop in the driveway and open the garage, he starts crying, loudly, scared to death to go in it. I tell him okay we will park out here. We haven't been in the garage for a month and now I have to desensitize him again. One step forward two steps back, that is our life and we accept it, but it isn't easy for him or for us at times.

Both boys are in a wedding this Saturday, which is why I took them out to a nice restaurant, so Cody can get use to sitting and waiting- not like McD's with a playground too. We are always planning ahead to help this boy. Letting him know in advance what may happen, he transitions much better this way. We are now practicing walking them down the hallway together, walking slowly. We write out the steps involved, let them know when it will happen, discuss it with them and remind them how to act. We work everyday practicing, but the truth is who knows how he will handle it. Thank goodness the bride and groom adore these boys and won't care if things get a bit crazy. Not sure how the grooms mother will feel, but I can't worry about that.

Cody is also hyperlexic. That means he's a precocious reader- he has been reading for a year (and he just turned 3). This boy can read children's books, sentence by sentence, page by page. He can also read most anything put in front of him (reads "morsels" on a bag of choc. chips). This is not a normal brain, he reads but usually can't comprehend-unless he is familiar with it. He was never taught how to read, it just is. It's a great gift but it also brings so many issues too.

Again Cody is more high functioning then some autistic children so hopefully he will learn how to succeed in this world. Not all of these kids have that same future. Sure some kids are being added under the "autism" spectrum, but there is no way this boy would have been overlooked, 10-20 or 30 years ago. He lost all language, all connection to his twin, and ended up in a world of his own. He slowly is learning how to rejoin with us.
I've said enough I'm sure, Sue

[sfoster]

Susan and Amy,
Thanks for the nice comments about my Grandparenting. As you both know nothing is more important to me than family. That is why we were put on this earth, to be with familes and loved ones.

I am fortunate to be able to help with as well as enjoy my grandchildren. Often people tell my daughter, you are so "lucky" to have your Mom help you so much. As I stated earlier, I get a break, I'm rested, it is so much easier and more enjoyable when I have time with them. I rarely watch them 2 full days in a row. I'm lucky to have these sweet boys in my life. They have added so much more fun on a daily basis. I love being a Mom and I adore being a Grandma, there is nothing like it.

Both of you I have admired because you not only have twins, but both have autism. I worry all the time if I am doing enough for Cody when I have them. His twin is a handful and needs me too. Jacob has "school" with Grandma when Cody is in 1:1 therapy. But when I have both to keep an eye on it is a lot of work. I just can't imagine having 2 to help with their issues all the time. What a great job you both are doing.YEAH!!!!!!

I wear my autism bracelet and ribbon every where I go. I try to educate everyone I meet about autism. I want them to know it isn't just "Rainman" type people, they are all unique in their own ways, and are truly individual. I try to let others know that we all have a place in this world, and to try to be a little more accepting of differences. Advocating for these children is so very important. I hope that with my stories, their observations of my grandson, my willingness to educate anyone I meet- that they will be more supportive of Spec. needs children, in their schools, their neighborhoods, and their lives. Sue

[bahorik6]

My twins are 10 months old. Is it the 1 year shots that are the questionable? Have any of you found the shot thing to be true. I am a special education teacher who has worked with a lot of autistic children and I have two cousins with autism. Any thoughts on getting the shots?

[Nursechic]

Is there some sort of genetic component to autism?

[sfoster]

I've noticed no one has answered either of your questions here. I will just say that many of us on this journey have discussed these topics.

Do a search- immunizations, or autism, or shots, on this message board- you will get many different responses. My autism bracelet, and pins are multicolored puzzles. This represents the "Puzzle of Autism". We don't know what causes it and it affects people of all color and races. These children have several factors in common, but all look different from each other.

Is Autism genetic- Shots etc. ? There seems to be a genetic link, and possibly an environmental trigger for some of these individuals. Overall I think that in time they will realize that there are many forms of autism, with many different causes. But read other peoples opinions after you do a search. I'm not sure if autism is curable, but it is treatable. At least for me- that is what I have learned. Hope this helps, Sue

[sevenstw1]

I've noticed no one has answered either of your questions here. I will just say that many of us on this journey have discussed these topics.

Do a search- immunizations, or autism, or shots, on this message board- you will get many different responses. My autism bracelet, and pins are multicolored puzzles. This represents the "Puzzle of Autism". We don't know what causes it and it affects people of all color and races. These children have several factors in common, but all look different from each other.

Is Autism genetic- Shots etc. ? There seems to be a genetic link, and possibly an environmental trigger for some of these individuals. Overall I think that in time they will realize that there are many forms of autism, with many different causes. But read other peoples opinions after you do a search. I'm not sure if autism is curable, but it is treatable. At least for me- that is what I have learned. Hope this helps, Sue

Well said, Sue. In our case, I do not believe vaccines played a role. I believe genetics is "at fault" (for lack of a better term). My DH certainly falls on the spectrum somewhere.

I do not rule out vaccines for all children. Do research as Sue suggests. That's the best thing I could tell you.

Amy

[SarahK]

I have just started reading the book by Christina Adams - A Real Boy. To be honest, it's very scary, and I want to know more.

I don't want to cause anyone any pain by asking, but if you're willing to share I'd like to know what you noticed that brought the issue to the attention of a specialist and then thinking back were there signs that you might have noticed earlier if you had just known to look for them? How old was your child when you started to wonder if something was wrong?

For example, in the book her son never pointed or asked questions, but she didn't know that these were potential indicators. This was intriguing for me as the little I've read before this seemed to indicate that a child suddenly slipped backward - losing the ability to talk for example.

Thank you for any insights.