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Desperate

post #1 of 23
Thread Starter 
I'm posting under another username because I am just so humiliated with how bad our situation is. My son is 5 years old was was diagnosed with high-functioning autism 2 years ago. He had always been a loving, well-attached child, and we have always practiced gentle discipline. Things have always been very challenging, as he is also a spirited child... but right before he turned 4 he morphed into this miserable, uncaring person, and its heart-breaking. The backtalk, the swearing, the mean things he says and does to dh, dd and me... we just don't know what to do anymore. He doesn't respond to any discipline, will not follow any household rules... we're even getting desperate enough to consider spanking. I'm constantly re-evaluating the situation, to see of he's getting enough attention, making sure he hasn't had any "trigger" foods, has he watched too much TV, gotten enough time outdoors, and I am at a loss over what to do. I keep telling myself its just a phase... but aren't phases supposed to end?

Its like this viscous cycle: we get up in the morning, my mind focused on having a positive day, and he starts up before breakfast is barely on the table. By midday, I'm so emotionally drained that I withdraw from him and want to escape just to keep from being hurt anymore. We barely leave the house anymore because trips out are a nightmare. The worst is when I try to talk to him about why his words and actions are hurtful, he doesn't seem to even care. Its not just a bad day, its every day. Today was so bad that I had to use every ounce of self restraint to prevent myself from just grabbing hold of him and physically hurting him. I finally just sent him to his room and he has to stay in there until dh gets home and I can leave for work. How much longer can we go on like this? Why is he so miserable? I feel like our expectations are appropriate, and we're as close as he'll allow us to be. I am just so afraid for our family, and what he's going to be like when he's older.
post #2 of 23
Hugs. Are you working with specialists? So not just structure but visual cues, pix schedules with prearranged breaks etc? And some sensory materials? If he's doing well at school you may qualify for in home training to transfer skills? What about respite services?
post #3 of 23
There is no institutional care here (TX) even when families want/need it except in much more extreme situations...
post #4 of 23
Quote:
Originally Posted by desperate View Post
The worst is when I try to talk to him about why his words and actions are hurtful, he doesn't seem to even care.
In AS kids I've worked with, trying to impact behavior through teaching empathy tended to make the behavior worse. One child in particular comes to mind with a conversation that went like this:

Me: "The men are here to work on the power, so they have turned the power off at the box to be safe."

Chris: "Why?"

Me: "If they have the power on while they are working on the electrical parts of the house, they could accidently electrocute themselves. So to keep us all safe, they turn the power off. That's why we can't watch TV right now."

Then I spent the next hour keeping him from sneaking to the box to try to turn the power back on so he could see the men get electrocuted.

Its not that he's mean; he's not. Empathy just hadn't developed yet and wouldn't for a very long time. It often doesn't work to try to help the spectrum child gain an understanding of how his behavior affects others in hopes that the child will then change his behavior. The spectrum child seems to need consequences and interventions that affect him, personally. Their concept of social relationships is very very unsophisticated. And they don't care - its out of their reach.

Every rule, every behavior must be carefully identified and labeled. "This is okay behavior. This is not okay behavior."

Consequences must be implemented for EACH occurance of the okay behavior and the not okay behavior, and done so neutrally, without affect or attachment. These are the rules: you followed this one, here is your sticker. These are the rules: you broke this one when you used the swear word; you may come out of your room in 3 minutes. Do you need an escort or can you walk by yourself? Okay, great. See you in 3 minutes. Disengage.

Its amazingly difficult. You can't take anything for granted. You must be on your toes every second, ready to implement that positive consequence or that negative consequence and do so dispassionately, without getting drawn into the war. I would have no issues with flipping the doorknob around on his bedroom door once his room is made perfectly safe for time outs so that the lock is on the outside - sounds cruel, but anything that takes the you vs. him out of the interaction will calm both of you down. In my case, it took about 4 months of implementing a really tight behavior plan with Chris, and I could then take Chris out of the house without him throwing his shoes into the river or pulling my hair while I was trying to drive.

A behavioral psychologist might be your best resource to help you construct an intensive, consistent, aggressive behavior plan that is tailored to meet your family's needs.
post #5 of 23
Thread Starter 
Part of the problem is that we no longer receive therapies. He was in ABA therapy for 2 years, but he no longer qualifies for any services... probably because the services he actually needs don't exist for his age group. I want to homeschool him because the schools can't accommodate his needs; he's in that gray area of being very high-functioning but unable to function in a classroom setting (BTDT), yet the school's solution is to put him in an inclusion class without an aide. I'm done fighting with the school, and we even changed districts hoping this one (with a reputation of being The Best for special needs), but they won't approve an aide for him either. So here we are: do we send him to school just to get a break, knowing that it isn't a good situation for him?
post #6 of 23
There is a nonprofit which advocates for parents with school accommodations (other things too). The lawyer who runs it mostly does chronic illness cases, but the accommodation laws are probably similar for autism; if she can't do it, she might know who can. http://www.advocacyforpatients.org
post #7 of 23
Welcome to MDC.

You might want to look into floortime approaches (Engaging Autism), or RDI (Relationship Development Intervention) - your son needs specific, direct instruction on social behaviors and relationships and these approaches can help. They're also very compatible with AP.

His mind works differently from many other children, and so the approaches work for typically developing kids may well not work with him.

He probably also needs a pretty intense sensory diet. Many kids with AS also benefit from a relatively structured day so he knows what to expect and what's coming.

You might try posting on the special needs board here. There are a number of parents who post there who have kids with autism and they're a good resource.
post #8 of 23
Thread Starter 
Thanks so much for all of the suggestions! I'm thinking step one will be to go back to Feingold Phase 1 and see if there is a trigger food I've overlooked, and I'm going to look into what our insurance might cover for some behavioral support.
post #9 of 23
I'm sorry you're going through this I wanted to comment specifically on the spanking. I know you said you're considering it as an option. I'm not really all that "GD," but with your kid, you do realize that if you start spanking, you'll likely lose control, right? You've got to deal with your rage somehow and spanking will only increase it.

A friend of mine said that she never spanked her son because she knew she'd never be able to stop.

I would probably not homeschool him right away. I homeschool with 4 kids and I'm pretty sure that I wouldn't be able to handle it if one of my kids brought me to the point of rage every day. I believe that schools aren't the "best" place for most kids. They can be good places for kids though. Give that school a try and advocate for him as much as you can.

Lisa
post #10 of 23
Quote:
Originally Posted by Smithie View Post
Autism is right up there with genocide on the short list of things that make me doubt the existence of God.

Um, do you think you could unpack that a bit?
post #11 of 23
To the OP, you might see if there are social skills groups/friendship groups around. Our local university has them available and in my son's group there is a range of skills from high functioning to much lower functioning (like my son).

And, FTR, 4-6yo were our roughest years. He is 8yo now, and even though he is far from typical, he has much better self regulation and self control than I could have imagined at 5yo.

Also, spanking is going to make his issues much, much worse. Spanking is really common around here and you can tell which kids are from households that spank because those kids are much more violent and it is really hard to explain to them that spanking is ok for adults to do to kids, but not appropriate for kids to do.

You might also look into anxiety meds. If my son were ever to go back to a regular school (he is home schooled) he would have to be on anxiety meds to cope. I have seen kids with severe behavior problems do a lot better on anxiety meds.
post #12 of 23
Also maybe you should hire a lawyer to send the school system a letter demanding an aide, if all else fails and sending him to school with an aide would be best for your family.

Even though I think of most of my decisions about my children as being decisions about what is best for them, the reality is that I have to filter all of it into the family unit dynamic. There are decisions I've made that are pretty good for them, but if I had to consider the child in isolation with other people not as factors, I might make a different choice. KWIM?
post #13 of 23
desperate, I was wondering if you've tried any medication for your son? My DS is slightly older and has a dx of high-functioning autism. He has been taking a TINY dose of Celexa (about a tenth of an adult dose) for about 18 months now and it's made an enormous difference. Anxiety is a very common symptom of autism and when untreated it can exacerbate a lot of the disruptive behaviors -- stims, rages, OCD and repetitive behaviors, etc. I've heard quite a bit frequently that risperdal is being offered, which seems like kind of a big gun to me, and parents are often very hesitant to try it. But using SSRIs (like Celexa) is also supported by the medical literature and it's not quite as heavy of a drug, imo.

We've found school to be very helpful as well, both as sort of a passive therapy for him (modeling of social behavior by his peers, coaching from his teachers) and as respite for me. DS is mainstreamed and does require a fair amount of 1-on-1 support but not a full time aide. I think however if not for the meds he would be in the self-contained autism classroom, not mainstreamed with peers, because his kindy teacher last year just was not coping with him prior to him starting the meds. He was not doing any of the work and he was disrupting the class every 5 minutes.
post #14 of 23
How much sleep does he get a night? At least 10--11 hours?
post #15 of 23
double-post
post #16 of 23
Aloha,

I am returning this thread, but please do keep in mind our User Agreement when posting, specifically
Quote:
Do not post in a disrespectful, defamatory, adversarial, baiting, harassing, offensive, insultingly sarcastic or otherwise improper manner, toward a member or other individual, including casting of suspicion upon a person, invasion of privacy, humiliation, demeaning criticism, name-calling, personal attack or in any way which violates the law.
Mahalo for your participation!
post #17 of 23
Thread Starter 
Quote:
I'm sorry you're going through this I wanted to comment specifically on the spanking. I know you said you're considering it as an option. I'm not really all that "GD," but with your kid, you do realize that if you start spanking, you'll likely lose control, right? You've got to deal with your rage somehow and spanking will only increase it.

A friend of mine said that she never spanked her son because she knew she'd never be able to stop.
Oh my, yes. Its my biggest fear, which is what keeps us from crossing That Line.

Quote:
To the OP, you might see if there are social skills groups/friendship groups around. Our local university has them available and in my son's group there is a range of skills from high functioning to much lower functioning (like my son).
We do have a very good facility that offers these services, but they are very expensive and are for older children. Right now our budget is stretched just paying for supplements and all natural foods, but hopefully once he is old enough (I believe the groups start at at 8) we'll be able to fund it.

Quote:
And, FTR, 4-6yo were our roughest years. He is 8yo now, and even though he is far from typical, he has much better self regulation and self control than I could have imagined at 5yo.
That's such a relief! I keep telling myself that it can't get much worse, but it still does. So, maybe once we get past this hurdle... Its so hard for him because he has the intellect of 5 year-old, but the emotional maturity of a toddler; it frustrates him to be so out-of-sync.

Quote:
Also, spanking is going to make his issues much, much worse. Spanking is really common around here and you can tell which kids are from households that spank because those kids are much more violent and it is really hard to explain to them that spanking is ok for adults to do to kids, but not appropriate for kids to do.
Yes, logically I know that he won't be able to make that distinction (especially since he already tends to act out physically), so I can only imagine how much worse i can make this situation by hitting him.

Quote:
Even though I think of most of my decisions about my children as being decisions about what is best for them, the reality is that I have to filter all of it into the family unit dynamic. There are decisions I've made that are pretty good for them, but if I had to consider the child in isolation with other people not as factors, I might make a different choice. KWIM?
What makes the choice to send him to school so hard is because things were even worse when he was in school; he'd hold in all of his pent up anger and anxiety, then unleash it on us when he got home.

Quote:
desperate, I was wondering if you've tried any medication for your son? My DS is slightly older and has a dx of high-functioning autism. He has been taking a TINY dose of Celexa (about a tenth of an adult dose) for about 18 months now and it's made an enormous difference. Anxiety is a very common symptom of autism and when untreated it can exacerbate a lot of the disruptive behaviors -- stims, rages, OCD and repetitive behaviors, etc. I've heard quite a bit frequently that risperdal is being offered, which seems like kind of a big gun to me, and parents are often very hesitant to try it. But using SSRIs (like Celexa) is also supported by the medical literature and it's not quite as heavy of a drug, imo.
I'm going to look into that, thank you for the suggestion! I have heard of Risperdal, but not Celexa; I'll discuss it with our doctor at his check-up. I'm not opposed to medicating him, but its something I've wanted to avoid for as long as possible. Anxiety is a huge issue for him and its gotten worse as he's grown more aware of his surroundings. As horrible as this may sound, I almost miss the days when he was in his own world and was only aware of the few people he trusts.

Quote:
How much sleep does he get a night? At least 10--11 hours?
On average, I would say 11-12 hours. He's been taking melatonin for about a year and a half, as he had such erratic sleeping patterns he would be up playing until 2am; not a good situation when he had to be up at 6am to allow enough time to get ready for school!

Quote:
Do not post in a disrespectful, defamatory, adversarial, baiting, harassing, offensive, insultingly sarcastic or otherwise improper manner, toward a member or other individual, including casting of suspicion upon a person, invasion of privacy, humiliation, demeaning criticism, name-calling, personal attack or in any way which violates the law.
Yikes. I'm already feeling like a complete failure as a mother, so I'm glad I missed whatever was posted.
post #18 of 23
If money is the main issue, see if the therapy provider has financial aid or scholarships. Our university is supported by the Easter Seals. Also, sometime Miracle Kids' Network will give you money to help with therapy. If you are super poor then you might apply for SSI which can be used to help with therapy costs.
post #19 of 23
You might also see if the place that does the social skills groups for older kids does something else for littler kids. We had Zane enrolled in a phonetic awareness group even though phonics was one of the few things he was advanced on, because the people that ran the group were the same people who ran the older groups. They used his strength area (phonics/ reading) to help him build social skills in a structured way that he could handle better than a typical classroom setting.
post #20 of 23
I agree with the PP who suggested pushing for an aide - you bring a lawyer or an advocate into it. If you have a local federation/group for children with special needs they can often connect you to advocates who work with your particular school system. Things the school absolutely will nod budge on magically become doable if the advocate comes and says the right things, sometimes. (not always, but it's a step in the right direction!)

I'm so glad you came back to the thread, there is some great information here!

FWIW, medication can be a lifesaver. It's not always the answer, but for some kids it can really turn things around. A child who is always on the edge of a meltdown isn't able to learn coping skills or alternative ways of acting, and sometimes using medication to help them control themselves brings the kiddo to a point where they can work on those strategies.
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