The Autism Spectrum Parenting LiveJournal Community

Subject:	Update on Chance
Posted by:	jupiterpurple.
Time:	9:42 pm.

There is so much to say about the infuriating business of dealing with DCFS. I can't write a novel here, so we'll skip that part. If a DSPD placement which goes through DCFS is something you are considering, email me. I will tell you about it. You NEED to know. Need to know. Need to know. Seriously.

Chance is doing well socially, for the most part. He is trying hard to be "older" than the four year old foster brother, and watches the eleven year old in church to see how to act. He is playing well with the kids in the neighborhood at the foster home. So there is some progress in the area of his developmental crisis. (he is trying to mature emotionally, now)
He is learning that there are consequences to actions. We taught that, and tried to enforce it. But we were, as you all know, emotionally drained and had pretty much shut down, and given up on a lot of our parental duties for both boys. If it doesn't NEED to be done, it doesn't get done. We are doing better now. Riley needs it because he was getting worse, and it will take time to reverse the damage done by Chance's influence, and our learned apathy. As Chance says, he has autism and Riley has bratism. (I believe it, too!)

On the down side, the amazing Dr Ferre, the first psychiatrist to listen to us and do any good for Chance, is retiring. I cried when I heard. We had our last visit Monday. I asked about this psych that DCFS wants to transfer his records to. "Can I trust her? Will I have the same problems with her I had with the psychs previous to him?" He said "No. I know her very well. She is a friend of mine. If you have any problems with her, call me." It seemed like he was blowing off my concerns, but I know him, and his attitude was one, actually, of complete confidence in the fact that the new doc would be good for us. As this would be our lst visit eve, I hugged him and told him through tears that he saved our lives. He really did.

On the bright side, we met the new doc and she loves the amazing Dr Ferre, knows and likes our pediatrician, and when told the problems we had the psychs previous to Dr Ferre, she had the same problem with them. She treated us like we knew something. I like her and do not fear for my son with her as his psych.

Maybe this is TMI, but this is also the condensed version.

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Subject:	Newbie's Mom ..My Son has AS & OCD (He's 19)
Posted by:	judymcc.
Time:	9:23 am.

My daughter posted a blog about my son & she has now indeed hoked me up with this blog site. I thank her for complimenting on me on my expert advocating. My son is 19, with a NYS Regents diploma. It seems to be a hindrance that he got this diploma, as now in trying to obtain services, he is "too intelligent". I'm going through the "Medicaid waiver" ordeal,(to receive more services) with a "Fair Hearing" scheduled shortly. Medicaid is his 2nd ins. We don't want to give up his primary. I'm waiting to hear from the hospital today for an admittance. I'm not sure where to really start with this or where to head. I will advise anyone with a younger AS child to read the book:
Asperger Syndrome, & Adolesence, Helping Preteens and Teens Get Ready for the Real World, by Teresa Bolick, Ph.D
(Also the author of Asperger Syndrome & Young Children.) I wish I had found out about these books much sooner. I read the Preteen one & it was a real easy read and very helpful & informative. I would suggest it to anyone.
I have worked with VESID (Vocational Educational Services for Individuals with Disabilities. We were trying to get "Supportive Work Employment". Unfortunately, at this point, my son's irrational behavior has thwarted any positive forward at this time. Therefore currently hoping to get him in a decent psych hospital to adjust meds, deal with issues of personal hygiene, etc. I've been hearing about resperidol. He's already been on everything and is currently on 1000mg. seroquel plus more.... I read someone's blog about milk & cereal. He consumes them & I wonder about the "gluten" aspect of things. I try to have him eat diversified, but I don't know where we'd be w/o cereal & milk, including often oatmeal..the real thing, not instant. Searching for answers to help my son have a productive life & use his intelligent mind. His OCD is sever & through the roof. Oh well, Must get on with the day, which may include my getting a call that there is a bed in the decent psych facility, somewhat near to us. Have a good day Everyone & hang in there & "keep the faith". I also have my first meeting coming up to be on a Congressional Autism committee.. so there can be changes in the government & more $$ for research, etc. plus it's all about what we need from a parents perspective. What we need is help, research, funding for services, etc.
Bye for now. Phew, I have been known to be a bit wordy! Bye.. Judy mcC

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Subject:	More on Chance
Posted by:	jupiterpurple.
Time:	7:16 pm.

I wanted to first let everyone here know how much your support has meant to me. I was a little hesitant to tell you all that we had placed our son. I read your posts and know that you all have such a hard time, like we do, and you all seem to do so much better with your children that I do with mine. But your words have comforted me like none others can.
Thank you, thank you, thank you.
Chance is doing well in the foster home. He goes to a day program every day and has therapy, I think once a week. But the honeymoon is over. He has had to face consequences and didn't like it. (we did this, too. Nothing new) He was sent to his room, and the parents asked if he wanted to say a prayer, would that make him feel better. He said yes, and that he wanted to say it. he said, "Heavenly Father, make me die tonight because I don't like this family anymore. Amen." The parents said, "ok" and left. He went after them and asked if he could say a better prayer. They said yes, and the night went better. He also has to go through ALL of church on Sunday without a snack. He keeps looking at the 11 year old to see what he's doing. So I think there is some positive peer pressure for him to mature. (Developmental crisis is one of his dx, he stopped maturing emotionally at age 3 1/2, but that can be "fixed") So I'm seeing some good possibilities.
The mom communicates really well with us, and we'll wee him the morning of the fourth for our town holiday fling, and the afternoon of the fifth for a family thing(my nephew from Az is bringing his new baby). So we're able to keep our word to Chance that w=he can be with us for holidays and family things.
The big negative of all this is dealing with CPS. In the interest of interest, I'll post that one later.
I just wanted to thank everyone and give an update on Chance.

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Subject:	Newbie
Posted by:	amorefitlauren.
Time:	8:13 am.
Mood:	hopeful.

Hello everyone,

I just joined this community a moment ago but I am so excited by it I wanted to just say hello.

My brother has Asperger's Syndrome (as well as OCD) and things are really starting to be overwhelming. He's a great guy, he'll be 20 this Sept., but lately we've had the police to our house at least once a week because his behaviors are violent and uncontrollable. Consequently he'll be psychiatrically hospitalized but then in a few days just returned home to start the cycle over.

I can't express what a phenomenal advocate my mother is but her efforts seem to constantly hit brick walls. I'm going to try to get her set up on LJ and to join this community. I think it would really help her.

I must be off to work but the idea dawned on me as I was getting ready that there must be a support group on LJ and low and behold I found you all! I look forward to being a part of this community.

-Lauren

p.s.-sorry I couldn't get into a more detailed intro at this time.

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Subject:	Out of the home
Posted by:	jupiterpurple.
Time:	8:33 pm.

Long story. (And I'm sure I'll be lambasted for this by some of you.)I don't know how many details to put here. Chance has a-typical autism and frontal lobe damage. No social awareness, no conscience. Life at our house is NOT NOT NOT fun. We are soooooo burned out. Our family tries to help, and our neighbors, but really, there's only so much you can ask of people, and they've done a lot.
We finally qualified for DSPD. Even for emergency funding in late January/early February. No help. No respite providers available. Found out in April the funding is there if we can find some one to provide respite. We could, but didn't know how to do it until three weeks ago (thanks for the emergency funding). Also found out three weeks ago we could have someone come in and help us try to un-disaster-ize our house (Chance destroys things like you would NOT believe). But we can't use that service now.
Had an "interview" with a respite provider in March, to see if it was a match. I asked that an appointment be set with another agency in case this is not a match, but our caseworker had good reviews from co-workers about this group. It was NOT at all what Chance needs. AND AND AND they were "hoping" to start this program in June. More than two full months from that interview!!!! So much for the emergency help.
The last time he was institutionalized, his therapist said he should go to a group home for a year or two before even coming home. That was two years ago. So DSPD says to have DCFS place him. Great. The people who take your kids from you and don't give them back. The people who did "intense in-home therapy" with us for nine months last year to the results of "I don't know how you do it" and "there's a family with six autistic kids, and THEY manage". These are the people who are suppose to put my handicapped child in a place that can help him and teach him, when his own, loving parents can't??!!?? Riiiiiight!!!!!!
Finally, they have a few potential placements and we have "family team meeting" to determine which is better for him. The swiftness of their actions lead me to believe we'd have at least three weeks to get his stuff ready. Turned out, the meeting was Monday. We met, and handed him over to, the foster family on Wednesday. What a difficult and heart-wrenching decision to make in the first place. Then for EVERYTHING to move so slowly, and suddenly, BAM!!! Wednesday was a hard day for us. We were melancholy. Chance was all over the place from excited, to nervous, to angry, to sad. How difficult. Then, we had a fortunate turn of events. The last half hour he was home, Chance was a complete bastard. Arguing, rude, snotty, mean, nasty. Ran the gambit of the reasons we can't do this anymore. It was very easy to turn him over.
The next days were hard. But he's doing well in the foster home. They have a boy near Chance's age, and they are in-separable. He is learning that we're not the only ones with rules and consequences for our children. So it's good, so far.
We had him today for a festival, and he was with us ten minutes and started one of favorite tricks. If we don't drop everything for him when he interrupts, he gets rude and quite nasty. He wouldn't stop. He kept it up a good portion of the day, and even did it again when we returned him to the foster family this evening. It's hard to have our visits tarnished like that. But it reminds us that we can't do it anymore. It's best for Chance, our other son, and us. And it's not forever. It will help us all have a better family life in the future.
So tell me what horrible parents we are. Or tell me I had no choice. It really is better for Chance because we just can't help him. He doesn't learn from us, and we are too burned out to keep dong this. And it's really taking a toll on our other son, in many ways. We really are to the point that if it's not worse for Chance, we HAVE to do it for the sake of the rest of us. But honestly, as hard as it is for my pride, we've already seen how it will help Chance.
Just need to rant. And to put my raw soul on the table here for comfort or complaint.
Sorry it's so long. I don't know how to "hide" the long bits.

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Subject:	intro
Posted by:	kaffee_spinne.
Time:	8:16 pm.

I suspect I have asperger's and a son with suspected same. He keeps getting kicked out of preschools (he's going to be 4 soon) and we're getting him assessed. He started walking at 11 months, running at 13 months and speaking in sentences at 23 months...but, to quote Hank Hill..."The boy ain't right."

I cannot tell you how discouraging it feels to go to neighborhood parties where everyone looks so nice and normal and happy with well-behaved children that stand around and play while their parents exchange exceedingly boring small talk. And I can barely get one plate of food or drink within 30 minutes for non.stop.re-direction.melt-down-ville, and we have to leave in a screaming flame of glory. There was one moment of 5 minutes where I had peace because my son was deft-fully screwing on some piece of equipment onto the hose - but this was not deemed by the hostess an acceptable activity b/c he was wielding it towards areas with people and so it was taken away. He did not want to play with the outside toys. He wanted to check out mechanical stuff. He wanted to be inside where it was not humid 99 degrees. No one was inside except for grownups getting food and beer from the too-nice-interior with so many things off-limits.( rant continued )

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Subject:	Riding Therapy?
Posted by:	majolie8007.
Time:	2:29 pm.

I am trying to find some summer physical activity for my 9yo son. He has low body strength, somewhat poor balance and coordination for groos motor activities and is essentially the same kind of couch potato as his parents. Team sports are very difficult for him as he does not interact with other children, rarely listens to adults, and has little motvation. We did baseball the past 2 summers where he did gain some skills and got some socialization, but he has aged out of the coach pitch league and I know he is not into it enough for the next level (practice or games 3 nights a week until 9pm with kids pitching badly). Anyway, I am thinking about swimming, horseback riding, gymnastics, or something.... The local Y is no longer offering special needs gymnastics though so I would have to find somewhere else.

I recently learned a number of nearby horse farms offer riding lessons and programs for children with special needs. Has anyone had luck with this having a positive impact on their child? The one closest to me is not certified, and it is much cheaper than the ones further away.

Also, now that my son seems to be developing an interest in swimming, any input on special needs swim classes? My local fitness center offers small classes of 3 or fewer kids each with a parent.

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Subject:	Domestic issues...
Posted by:	soul_seeking.
Time:	10:07 am.

As of lately my brother has been having some problems. He is out of a job (and has been since before college finished) and as a result is completely broke. The arguments between him and my parents are doing nothing but growing in intensity and number. He doesn't take care of himself and is constantly frustrated and angry. Suggesting that he moves out only increases the anger/frustration because he doesn't have the confidence that he will be able to take care of himself. We are all at a loss as to what to do, especially since he is 18 (going on 19 this month) and therefore that limits the options a bit. From what we can tell he is doing your typical teenage thing but a little late and very explosive. He and I have had a few calm talks but he is stuck wallowing in his self pity and it very hard (damn near impossible) to pull him out of it or argue against the position he has taken. I remember feeling that way when I was younger and acting the same way he does now, but I also remember having a very hard time trying to figure out how to deal with it myself. In fact, it was so intense that it took me years to find ways to express it properly and I still struggle when it comes to coping with it. It is almost to the point where I am thinking of suggesting that he consider meds to help him deal with the intense anger and frustration; but I really don't like the idea of being on meds for stuff like that and I know he doesn't like the idea of being on meds in general. I am really at a loss and cannot think up solutions to this problem. I know it is something that he has to deal with himself, but it is getting to the point where my parents may just kick him out because of his attitude. I know if they do, things will get much worse before they get better and I am not sure he would be able to survive that (not a pleasant thought I assure you). If anyone has any constructive ideas to throw my way it would be greatly appreciated.

(cross posted to asperger, autism, diabetes)

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Subject:	My son's award ceremony (cross-posted; sorry)
Posted by:	haddayr.
Time:	4:39 pm.

After months of extreme behavioral difficulty, my Aspie son through herculean effort managed to keep it together with only ONE ten-minute fit for an ENTIRE MONTH.

For this, he was awarded a Citizen of the Month accolade.

We got to the gym before him.

"Where's Arie?" his three-year-old brother Éiden asked me 7,000 times.

When his class finally filed in, Arie was conspicuously in the middle of the line (he used to DEMAND to be in the front at all times). He looked anxiously around the auditorium to be sure we were there, his hands clasped desperately behind his back to show his good in-line behavior skills. I waved to him like I was having a seizure. He lit up and then went to sit with his class.

He was such a last-minute addition to the Citizen of the Month roster that his name wasn't on the program, and they started out with the third graders and worked down to the kindergartners. Arie was nearly the last one to get his award. Things were touch-and-go in the Éiden department: he finally lay down on the ground in the aisle, hands plastered to his sides, to announce his displeasure.

When they called Arie, the principal mispronounced all of his last name -- a proud family tradition -- but pronounced his first name correctly, which confused me. The paragraph she read was so short and simple: "Arie is a lot of fun to have around, he is a very good student, and he has made good choices all month." That was all. No one else seemed impressed he'd made good choices all month, but he stood with his hands straight at his sides and beamed and beamed and beamed.

Sadly, he did not light up the room enough for our photo to take, as I was too gimpy to stumble to the front of the room and snap a shot and Jan was too shy.

He posed afterwards, though, in the lunchroom, with the same proud grin. As we waited to go in, he solemnly held his arms out and allowed a full-body in-the-air hug. The other parents in line looked away politely at the strange family making such a big deal out of practically nothing.

Arie posed with his celebratory frozen yogurt once we were inside for another picture. They'd called it ice cream in the letter home, but after a momentary difficulty with this Arie agreed that frozen yogurt is as good as ice cream.

I took more pictures. I took pictures of the brothers eating their yogurt. I took pictures of the certificate. I took pictures of the paragraph on the back of the certificate.

I did not take a picture of his award pencil. I had to draw the line somewhere.

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Subject:	Milk addict
Posted by:	jolie_moon.
Time:	5:53 pm.

Any of you guys have a child on the spectrum who's also a milk addict? My almost-3-year-old son is OBSESSED and ADDICTED to milk, it's driving me nuts!! I've been trying to reduce him to 2-3 cups a day with diluted juice in between. Then he finally started signing milk again so I asked his autism specialist teacher what I should do if he asks for milk at times he shouldn't have milk. She said to give him little by little, otherwise he will STOP signing milk. So I tried that, and he just kept asking for more and more because I was only giving him 1/4 cup of milk each time he asked for it. His dad said maybe if we give him a full cup, he will stop asking for another 2-3 hours.. we tried that, and our son was still acting like a MONSTER whether we told him "later" or tried to give him juice instead. Because of this, he is a MONSTER and has been soiling his diapers ALL DAY, ALL NIGHT. Our son truly truly truly BEGS and NEEDLES us for milk all the time. WIC and his doctor said only to give him 2-3 cups of milk a day, period. The teacher said to keep giving little by little. NOTHING IS WORKING.

Should we just flat-out BAN milk? I am tired of my son needling me all the time, I am tired of constantly buying milk all the time. What do we do?? Please help before I pull out all my hair! (heh)

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Subject:	Autism & potty training
Posted by:	jolie_moon.
Time:	7:17 pm.

Hi, what's your advice on potty training for autistic children?
My son will be starting summer school in less than a month, just a week away from his 3rd birthday. I'd like to try potty training with him again. How often should I have him sit on the potty? He watches his dad "go potty" sometimes, so I'm hoping that will help him get a better concept of using the potty.. I know I'm supposed to give him a treat after he uses the potty successfully, but any other advice? My son is deaf and autistic (with a possibility of ADD/ADHD) -- he used to know up to 50-60 signs until his brother was born.. his signs regressed. Now he will only use about 7 signs. Not sure how to teach him how to use the potty if he is kind of "non-verbal"?? Not literally non-verbal, just not communicating that much. ARgh, I am not making any sense here, I know....

X-posted to several other communities...

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Subject:	Expecting Diagnosis.
Posted by:	sheling.
Time:	2:50 pm.

Hello, all,

Firstly, I have a tendancy to ramble, especially when I'm thinking stuff through, so apologies in advance.

Anyway. There's just me and my son at home - he'll turn three in August and he started at a nursery in the UK 6 weeks ago, three afternoons a week. Yesterday we had his first "review". There were a number of "concerns" regarding his behaviour that were raised; many of them were things that, 2 years ago, I'd taken to my health visitor as concerns, and was brushed off for worrying over.

He's a lovely, very easy little boy. As long as you play by his rules, don't adopt either a loud or stern voice and allow him time and space to get on with his own thing. Saying that, he's not withdrawn or antisocial... at home. At nursery, however, he's a different child.

Autism, during this meeting yesterday, became the elephant in the room that no-one was prepared to talk about. All the reasonable steps to seek a diagnosis were put in place, yet the word itself was never actually mentioned. However, over the next couple of months, he will be assessed by a speech therapist, a child psychiatrist (his emotional range, apparently), hearing and sight people, and a paediatrician.

I am fine with all of this. I have long since made my peace with the notion of my son being different to most other kids, and it causes me no concern or grief to have this up in the air now. If anything, I feel relieved that, finally, my list of concerns is getting some attention - finally my son will hopefully start to get some help and support geared specifically to his needs.

I'm someone who feels able to cope when I know everything I can about something. However, autism is such a broad range of "symptoms" and quirks, and effects people with so many differing levels of severity, that it's hard to know where to start. Therefore I've decided that, in this instance, I need to know how to be a mother before I learn how to handle the doctors; I need to understand how our home works for him, because, until now, we've been feeling our way through darkness, really.

And that's really, why I've chosen to join this community; to get an idea of what having an autistic child will mean to me as a mother, and how he will (or already does) define "home" - what he needs, why some things trigger and others don't and so on. I'm a big believer in the wisdom of collective experience, and fully accept that whatever "it" is about my son that makes him so different to other kids, it's not something that I'd ever seek to change and aspire to work with.

Thanks in advance; more details on the meeting yesterday can be found in my journal.

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Subject:	Just diagnosed
Posted by:	magikofeden.
Time:	2:56 pm.

We just got a PDDNOS diagnosis for my almost-three son, Caleb. I'm scared! I don't know what this is going to mean for his next 70 years, how my husband and I are going to help him or what to expect.

I don't want to be a bad mother. I'm full time at home with him to make sure he get's what he needs, but what does he need?

Deepest appologies if I sound pathetic about this whole thing, but how do you all cope? I sat and cried for a while wondering if I should keep with the standards I've held him to or not bother because he'll never succeed anyway. I'm scared for him. What if he can't appreciate the books I love so much because he can't understand. We had so many fun plans for teaching him about the planets and letting him go to sunday school making sure his teacher uses gender nuetral pronouns for God.

If I'm a selfish person for being afraid of these things, please tell me-but tell me how to not worry about this too.

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