Autism thread

concentric wrote:

Eleima, I'm so glad you are on GWJ, because I think of you as always having such constructive things to add. Just keep moving forward!

I just saw this article in the NY Times about getting dental treatment for children with autism. Lots of practical advice. We have a pediatric dentistry program attached to the Center for Disability and Development here, so fortunately it's been easier for us to get our son care than many of the families mentioned in the article. I like the emphasis on getting the child accustomed to the environment prior to treatment. It's slow, but does work.

Our pediatrician referred us to a pediatric dentist who has lots of experience with special needs kids. We are really dreading going, as I'm sure Owen has a mouthful of cavities. He's getting better at letting us brush his teeth, but I know we don't do a wonderful job.

Oh boy do I remember the early dental visits, with my son... rough. It got better, and now it's hardly an issue for him. He's going to be 11, in 2 weeks! I can hardly believe it. Tempus fugit.

Thank you very much, Concentric. I really do try to be constructive, but it's not always easy. Sometimes it really feels as if I'm just rambling on!
Many thanks also for that link you provided. We still haven't taken that first step, but we're going to have to sooner rather than later... I'm really dreading it.

Maybe some of you have already seen this: Scientist Implicate More Than 100 Genes in Causing Autism (NPR). No surprise, right? My son and I have participated in some of the genetic research. I know some autism activists are worried that this knowledge will be used against those with autism, but my opinion is that the genetics will be so complicated that finding a genetic "cure" will be practically impossible, and that it will still be really hard to predict who might be born with autism.

More speech therapy for my daughter. I can't get rid of the suspicion that she might either be on the mild end of the spectrum, or at least show some of the traits more than is typical. She's smart, sweet, and happy, and is far more engaged with people than Alex at her age, but prefers not to play with other children at daycare. Or it could be that she's like me and her father, that is, introverted.

Yup, not much of a surprise, but still interesting nonetheless, thank you for sharing, Concentric. This is also why I'd really like to have my youngest undergo some tests as well. Only seven months, and I'm already worried about him. I see a lot of his brother in him, which is to be expected in siblings, but I feel he isn't babbling as much as he should be. And I'm very much aware that it just very well might be nothing more than me projecting my anxieties on him.

We got the formal diagnosis yesterday for Matt, and he's most definitely on the spectrum. They won't give us a final, definite diagnosis because he's so "young", and they're classifying him as being on the spectrum, no more. This wasn't a surprise for us, of course. I don't have the final report yet, but they couldn't detect any cognitive impairment at this juncture, which is good. He's most definitely flagging in social interaction and behavior. My husband, clearly, is still struggling in his permanent vacation in Denial-land. As we drove home, he went on how they were pessimists, and that Matt had a lot of potential, and that they were putting him down and how he totally could be "just like every other boy" some day.
Now don't get me wrong, I love my son very much, but I feel that when my husband says that, he's literally denying who and what Matt is. The neuropediatrician, the speech therapist, the behavioral therapist, occupational therapist... they aren't out to "get" Matt, they're just observing him and being objective. Matt, as wonderful a little boy as he is (and good grief, I miss him, can't wait to see him next Thursday), is different. Different but not less. And though he may one day say "I love you, Dad" like other boys, he'll never be "just like every other kid." And that's okay. I'm okay with that. Or at the very least, I'm coming to accept that. That doesn't mean I don't believe he has potential and will adapt to our world. Simply that he isn't "standard".

So enough livejournal'ing, my question is: have any of you felt this disconnect with your spouse on the matter? On how you perceive your child? I admit, I'm finding it hard to deal with, husband and I are just not on the same page at all...

When my son was first diagnosed with his disorder, my wife and I were in really different places. She threw herself headlong into reading up on his syndrome and everything related to it, and she dove into every service and solution and therapy that she could find. I, on the other hand, went into mourning for the life I'd imagined he'd live that was now completely and irrevocably off the table and, because his was a genetic condition, always had been, but we'd never known it.

My wife switched into full-on go mode, and I came to a stop.

It caused a lot of problems between us. She didn't understand why I seemed to be disconnected and having so much trouble with things; I didn't understand why she didn't see that this was a monumental, and in some ways very tragic, change in the course of our lives and our son's life. Neither of us was in denial about it—it was pretty hard to be in the light of a firm genetic diagnosis—but we handled the situation very differently at first.

In retrospect, I think she was trying to get as many interventions and therapies going for him in order to hopefully grab whatever skills we could get for him, while I was letting go of the things we'd never have. I don't think either of us was wrong in our reaction, but it caused some problems for us and exacerbated other problems we were having.

But over time, we've met back up somewhere in the middle. She had a period of mourning, and I stopped mourning and started engaging. It took us time, but now I feel like we're a pretty good team with our son's care.

I realize that's not completely equivalent to your situation. My heart goes out to you and your husband because I know that it's so hard to come to grips with something as life-changing as this. I hope you guys find some common ground soon.

I remember having his life "flash before my eyes" moment... will he:
Pass for "normal"
Have friends
Graduate
Get a job
Have a girlfriend
Get married
Have kids
(I'm getting misty)

I used to cry about it, in my "weaker moments," but not really anymore. Don't get me wrong, I still "worry," but his happiness means a LOT more to me than any of that "other stuff."

But as he's getting within days of turning 11, I don't think about the "who I built him up to be before he was even born" son, I love him for who he is, not who I imagined he'd be.

/maudlinmoment

Eleima wrote:

Matt, as wonderful a little boy as he is (and good grief, I miss him, can't wait to see him next Thursday), is different. Different but not less. And though he may one day say "I love you, Dad" like other boys, he'll never be "just like every other kid." And that's okay. I'm okay with that. Or at the very least, I'm coming to accept that. That doesn't mean I don't believe he has potential and will adapt to our world. Simply that he isn't "standard".

Yes, absolutely. I like how you put that. It's hard for me to imagine my son being anything but who he is.

Diagnosis day is tough, but I found it good to have a professional opinion. It has allowed us to move forward.

Yeah, Matt's getting a diagnosis doesn't decrease his potential at all; it lets him qualify for services and/or environmental modifications that can ensure he reaches his full potential. But as others said, getting that diagnosis on paper is a big thing, and people react differently. I hope you and your husband can come to an agreement in time.

In retrospect as tough as diagnosis day was, it really was the best day in this long journey as it allowed us to accept and move on. We haven't looked back.

Thanks a lot for your feedback gang. Thanks in particular to Clocky. When I saw her message last night, something went "ding" in my brain. We're not dealing with this in the same way, it's as simple as that. And I can't make him deal with it the way I think he should. If that even makes any sense. Point is, he has to do this on his own. I just wish he'd see a therapist. I have been seeing one for a few months now, and it's been a world of help.

Wink, I think that's exactly how my husband thinks and what he's still hoping for. That his son will graduate, get a job, find love, perhaps have children of his own. And it's not that I've written off that possibility, it's just that it's so many lightyears ahead of what I hope to have for him. I just our son to be happy, and to have a better understanding of the world and people around him. The rest of it would be just a bonus.

And yes Dee, that's exactly it, we need the diagnosis to do the paperwork and have access to services. Except hubby isn't keen on going through the process because he's still clinging to his hope of living abroad. And I myself think it's nuts. I'd love to go live in Canada, return to the North American continent. But at this point, particularly in the past month during which we've been leaning so much on my mom... We need our support system, good grief, we don't just need it, we NEED it. And hubby just doesn't see it. Yet. I hope he will soon.

Ugh, sorry for going on and on, guys. Here's a pic of Matt to apologize for kinda taking over the thread. This was last month before he permanently left the island. I love that shirt, it has a bunch of sharks on it and reads "Même pas peur" (totally not scared!).
IMAGE(http://i.imgur.com/WQItHJA.jpg)

I know every kid is different, but when we got our diagnosis a year ago I was devastated. My kid was non-verbal, had no social skills and had lots of difficult behaviors I figured he'd never live anywhere but with us, let alone be potty trained.

Fast forward to today, I have a happy 4 year old who never shuts up, has friends he actually plays with and is getting close to being potty trained. Don't get me wrong I am not so naive to think that he isn't going to have LOTS of troubles in life but for once I actually think he might do okay in school and might one day be able to function independently. I know others aren't so lucky and I fully believe this has everything to do with all of our hard work during the past year with therapy and reinforcements. Once we accepted the diagnosis, and dug in for a fight things went like gangbusters.

The worst thing you can do (and I do it all the time) is underestimate the little guy. He just might surprise you.

IMAGE(http://i.imgur.com/xCO7uls.jpg)

Before my son was born my greatest fear was he'd end up with some form of ASD. It didn't fit into the picture I had of our lives together.

Now he is 3 and his baby sibling is on the way I know I don't have that fear any more. However s/he comes to us s/he will be loved. However the dice land they'll be my child and we'll face each of our unique challenges as a family.

I haven't seen my boys much in the past week, since I've been on call. However, my wife sent me some pics today of her costume, and our boys. Here's a good one of those two little devils:

IMAGE(http://i.imgur.com/q3HWUQB.jpg)

Tristan really took to a Buzz Lightyear toy when we had one of his developmental appointments, so my wife decided they'd do Toy Story this year. Unfortunately we couldn't find the gloves and wing packs for the Buzz costume, but he still liked it pretty well. Sabastian loved the Woody costume, so it worked out.

Still taking things slowly with Tristan. He's starting to do a bit with potty training, and at only 2.5 years, he's not too far behind the normal curve for that. His vocabulary is expanding a bit. Just taking one day at a time.

Maq, congratulations!!! And you're right, whatever happens, they're always a joy, even with the worries and headaches.

And thanks, Producto and PurEvil. Owen, Tristan and Sebastian sure are adorable! And yes, I'm definitely still hoping that one day, I too will be able to celebrate Halloween, Thanksgiving, Christmas, his birthday and have it actually mean something to him. Baby steps. We've already done a lot and come so far in the past 5 months. I too hope that he'll become a chatterbox. But I'm okay with Matt being Matt and not being the perfect idealized version of Matt that we'd built up initially.

Eleima wrote:

Maq, congratulations!!! And you're right, whatever happens, they're always a joy, even with the worries and headaches.

And thanks, Producto and PurEvil. Owen, Tristan and Sebastian sure are adorable! And yes, I'm definitely still hoping that one day, I too will be able to celebrate Halloween, Thanksgiving, Christmas, his birthday and have it actually mean something to him. Baby steps. We've already done a lot and come so far in the past 5 months. I too hope that he'll become a chatterbox. But I'm okay with Matt being Matt and not being the perfect idealized version of Matt that we'd built up initially.

I laugh because we always wished for speech, and now he never shuts up! Watch what you ask for I guess!

Well, Owen is going to start indoor soccer tonight.

These activities always bring me great anxiety, thankfully my wife seems to have will of steel when it comes to this.
Thankfully at age 3 and 4, most of the other kids won't be doing anything remotely team oriented.

El-Producto: how has the soccer been for Owen? We've thought about getting Alex signed up for soccer, but haven't yet done it.

I love seeing all the pictures of our children!

Our regular teacher conference was tonight. Alex is making good progress with his IEP goals, and is on track with the goal concerning his activity in groups. He does not need a visual schedule at preschool. It looks like he will be placed in kindergarten next year, but we'll have to wait to see what the best placement for him will be. There are several classrooms set aside for children on the spectrum, and it wouldn't surprise me if he were placed in one. That would mean a long bus ride, but so be it. And he is so sweet to us. The other night, he told me he was happy. I asked him why, and he said, "you are here." I should have recorded that to play back in about 10 years...

But I know that as challenging as our children's behavior may be, that they love us, even though they may express it in a different way than we expect.

I am dismayed and sad about London McCabe's death.

Here's a picture of my son with a hat I just knit for him:

IMAGE(https://farm8.staticflickr.com/7517/15731069302_0bf3feb7e9.jpg)

Yes, it's big, but I had to make it big enough for him to wear for at least a couple of winters. Little dude has a BIG HEAD. Like his father.

I am dismayed and sad about London McCabe's death.

I get so wrapped up with work that I sometimes feel I'm living under a rock (which doesn't help in the fact that I don't listen to radio or watch TV). Had to google this... not the best way to start the morning. Someone she trusts needs to throw her off a bridge, but make sure she lives so she can think about that for the rest of her miserable life.

PurEvil wrote:
I am dismayed and sad about London McCabe's death.

I get so wrapped up with work that I sometimes feel I'm living under a rock (which doesn't help in the fact that I don't listen to radio or watch TV). Had to google this... not the best way to start the morning. Someone she trusts needs to throw her off a bridge, but make sure she lives so she can think about that for the rest of her miserable life.

Please put Alison Tepper Singer there with her. Singer is a founder of the Autism Science Foundation and a former executive VP at Autism Speaks. In one of Autism Speaks' videos, she mentions that she almost drove off the George Washington Bridge with her autistic daughter, and the thing that stopped her was the fact that she had a non-autistic daughter at home.

As far as I know, neither Singer nor Autism Speaks have condemned that statement. In fact, she semi-backpedals into blaming lack of services.

You are a great knitter, Concentric!! Kudos to you!!

I am also very sad to hear about London's death and the manner of it. But I cannot find it in my heart to be as harsh as Dee. I too had those horrible, horrible thoughts a few months ago. I'm not proud of it, but I was in a bad place, with near post-partum depression, Matt, a distant husband, no family to help (at least not in a 6,000 mile radius). And I too thought about driving over the edge of a bridge with both kids in the back. But I knew it wasn't right, and I spoke up about it, and I got help. To this day, my husband won't forgive me for having these dark thoughts, even though I was asking for help. I'm not proud of it, or excusing anyone or anything, but I can understand the depths of the despair you can feel. You don't always think rationally.

News on my end. So we were reunited with Matt yesterday, to everyone's greatest joy. Unsurprisingly, he went straight for his dad. I also got my own share of cuddles when he wasn't around. I also met with the behavioral therapist who has been working with Matt since October. I have a very good feeling about her, and I'm very glad to say that I've been doing some things right. We've got a lot to work on, particularly my husband who has been encouraging some bad behaviors. I'm so glad to finally have someone else say it, and not me. I basically can't say anything to him anymore, he just can't hear it coming from me.
I'm really, really glad to be back with friends and family close by, it's going to be a huge help for me.

I have had these thoughts as well. Would never act on it, but...

The self-injury, violence, messes to clean up, constant noise but no communication, lack of sleep, no signs of progress, insufficient help and dwindling resources, with no end in sight and the prospect that things will only get harder rather than easier... That can really mess with your mind and drive you literally insane.

I haven't had those thoughts, but I can see where they come from. I don't feel any anger toward Ms. McCabe, only sadness. I haven't felt that kind of desperation and despair when it comes to my child, but I can easily imagine it.

And Eleima, good on you for recognizing that you needed help and for speaking up to get it. I'm actually really angry with your husband for holding that against you.

Eleima, I can't condemn people for having thoughts. It's acting on them, or trying to justify such thoughts and actions that I have a hard time forgiving. I also note that you thought of driving off with both kids; you didn't think that one kid was worth more than the other. And you're not rationalizing them, now that you've emerged from that dark place.

Oh believe me, I was trying to rationalize them at the time, and I'm not naive enough to think that I'm out of the woods. And yeah, Clocky, I'm upset at him too, but it's becoming increasingly clear that he has a lot he needs to deal with, and I just can't help him anymore. I have to help myself and my children first.

But enough about me, and more kid pics!

The situation makes me very sad, because I know that the mother had had a breakdown prior to this, in addition to many difficult stresses in her life. Still. She actually did it. I am like Clock: I haven't had those thoughts either, but with everything she had going on, I think I can see why she was thinking about this. That said, there's a huge difference between thinking about it and actually doing it. I've lost my temper with my children, and I'm ashamed of smacking my son on the bottom. One time I even slapped him in the face. It's up to me to see that I don't get it a place where London's mother was. But, again, this doesn't make me angry, it just makes me so sad. It hurts my heart. What does make me angry is the response I see from people like this:

http://emmashopebook.com/2014/11/06/...

A psychology professor who runs an “education” group for mothers of autistic children in California said, “quite frankly, I am surprised this doesn’t happen more often.”

Wow.

“I am surprised this doesn’t happen more often.”

The casual nature of this comment stunned me.

I haven't had those thoughts with my kids, but then I'm nowhere near the primary caregiver for them. I go weeks at a time with only talking to them on the phone, which sucks. Both because I miss them, and because my wife very rarely gets a break from being supermom. I don't fault anyone for having thoughts, regardless of what they are. Sometimes my mind stays in dark places that I don't even want to get into, but then again, that's typically all aimed at myself. That woman threw a child off a bridge though. I'm not angry, as I don't know her, but it makes me feel like just putting her in jail is so far short of true justice.

Tristan had his first speech therapy session today. The therapist told my wife that he doesn't really fit the typical autistic behaviors, and that she doesn't believe he is autistic. He occasionally breaks out with very clear speech using complex sentences, which just doesn't fit the normal behavior. My wife was telling me that a few nights ago, he walked into the kitchen after eating all the sausage she cooked, and very clearly stated "Mommy, where's the sausage? I know you have more in here." Then back to baby babble.

It's weird. It really is, and it catches us off-guard a lot. Apparently she believes that he is certainly delayed, and shows similar symptoms, but that he shows enough signs of being NT that he just doesn't fit well in either. I don't know. Anyway, she wants him to start school as early as possible, because she feels it's the only way to really focus well on all of his needs (sensory, attention, speech, etc). We've talked about it with the school system, and he's due to be reassessed in a few months, which is when we'll have to make the call on that. For us, it's going to be rough on our finances, even with me making nearly double what I did last year, and her getting promoted and making more too.

All told though, it's actually good to be in this type of situation. There's hope that with a lot of attention and care, he'll be ready for school with other children his age, which is the goal. We just have to figure out all the details.

And, another Halloween pic. I call this one, "Like a boss..."

IMAGE(http://i.imgur.com/sw4V3VM.jpg)

PurEvil wrote:

I'm not angry, as I don't know her, but it makes me feel like just putting her in jail is so far short of true justice.

Tristan had his first speech therapy session today. The therapist told my wife that he doesn't really fit the typical autistic behaviors, and that she doesn't believe he is autistic. He occasionally breaks out with very clear speech using complex sentences, which just doesn't fit the normal behavior. My wife was telling me that a few nights ago, he walked into the kitchen after eating all the sausage she cooked, and very clearly stated "Mommy, where's the sausage? I know you have more in here." Then back to baby babble.

It's weird. It really is, and it catches us off-guard a lot. Apparently she believes that he is certainly delayed, and shows similar symptoms, but that he shows enough signs of being NT that he just doesn't fit well in either. I don't know. Anyway, she wants him to start school as early as possible, because she feels it's the only way to really focus well on all of his needs (sensory, attention, speech, etc). We've talked about it with the school system, and he's due to be reassessed in a few months, which is when we'll have to make the call on that. For us, it's going to be rough on our finances, even with me making nearly double what I did last year, and her getting promoted and making more too.

Purevil: that's the thing. Just going to jail isn't true justice. If it were me, I can see committing suicide. I think I would do that, or (I really hope) reach out for help, before throwing my child off a bridge. But I am still in no place to know.

Tristan is amazing. There's obviously a lot going on in his head. He must be very bright. I definitely understand the stress concerning the cost of services.

Even though our appeal with the insurance company for speech was successful, OT is denied for the rest of the calendar year, and we don't have the data to support a successful appeal. What he really needs is food therapy, because his diet is so limited. But the Center for Disability and Development does not recognize sensory issues. So getting an independent authority will be very difficult. We were able to wangle a way around that, so that the food therapy will be covered. Otherwise, the $200 it would have cost to continue the therapy would have been possible though with sacrifices.

I hope you're in a good school district that will really support Tristan's needs. Here, I am confident that Alex would not have made nearly the progress he has without privately funded support. Something I think is odd is that a lot of people comment that we are doing so much for Alex. But my reaction is that all I'm doing is making contacts and following up. Yes, I am taking him to many appointments, and so it's hard for me to understand why other parents wouldn't do the same. At the same time, I know I benefit from having good medical insurance as well as a flexible enough schedule to allow me to take him to his appointments. Frankly, I feel very fortunate that I'm able to keep working full time and get Alex the help he needs.

ETA: Alex's symptoms are mild, he's been progressing better than expected, and he is a loving, sweet little boy. That mitigates what my reaction might otherwise be. Even though he's got a disability that will likely cause him difficulties later in life, I feel blessed to be able to feel fairly optimistic. So I don't think I am in any position to judge. But I simply can't imagine ever doing what London's mother did.

I mean, we have a lot going for us where we live. The school system really is awesome, and all of his therapy thus far has actually been free through them already. It's just that it stops at 3 years of age, and at that point they reassess and we come up with a new plan. We've already visited one of the schools in the area to see what kind of environment he'd be in, and he certainly would be in a good place there. The problem we have, is that this area is insanely expensive for daycare, even for before and after school care. We pay around $1200/mo for them both right now, and that's about half the norm due to it being a military run daycare on the base my wife is stationed at. We have some other venues for aid, such as the military can give us some help in his care, and my wife is going through the process to have that lined up if we need it. I don't think I can get anything from my job, as I don't have any of the benefits (no need with my wife being active).

We've been looking at maybe getting a live in nanny, and my wife has someone in mind that would like to move to this area, already knows the boys, and was really good with them the last time she kept them. I have my reservations about it, but it's hard for me to help out as much as I'd like when I work anywhere from 40 to 110 hours a week, and I work hours that don't work well for school (1000-1900). I'm thinking of applying for a supervisor position that's going to be posted soon, but negotiating the money would be a big issue for me. This year I'll make over $20k in just overtime pay. I'd have to have my base pay bumped up enough to cover that, or else I'd take a huge pay cut. If I get it, and break even on yearly pay, it would give me a M-F schedule with somewhat flexible hours, which would allow me to help out a lot more. I feel guilty not being around them most of the time, but we've dug ourselves out of a financial hole this year, and we've actually started saving money for the first time since we got married almost 13 years ago.

Sabastian starts school next year anyway, as he'll be turning 5 years old, so getting him out of the daycare is also coming up. We're just going to have to make a lot of changes this year, and it's just so much it's a bit overwhelming.

We've been able to afford all of my son's services because of the Colorado Medicaid children's buy-in program. There's a sliding scale monthly cost to buy Medicaid coverage for handicapped children who might not normally qualify for Medicaid because of income caps. We have good health insurance, but they still greatly limit the kind of therapies my son can get, but Medicaid covers the difference and even provided him with his talker device. Between speech, PT, OT, behavioral, and now feeding therapies, he has six therapy sessions per week, and there isn't a chance we could get all of those covered by our insurance and also afford the copayments.