My autistic son & CPS

A place to discuss the many medical issues that may come up during the course of a CPS case.

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angelheart83
Posts: 330
Joined: Tue Jul 27, 2010 4:12 pm

My autistic son & CPS

Postby angelheart83 » Sat Aug 14, 2010 6:13 pm

My son's autism is a medical issue that's come up during my CPS case.

The initial allegations came in July after a neighborhood dispute. The initial contact involved two social workers and four policemen outside my home, threatening me and coercing entry. I was at various times threatened with arrest and with losing my son to either foster care or an institution.

I won't get into the whole case, only the things that involve my son's condition. My son has a fairly severe case of autism. He's had a very hard summer, poor little boy. He's having a regression and even needs to be potty trained all over again after having been potty trained for 2 years. I believe it was caused by the change in routine after the school said he didn't qualify for the extended year program, which was only 2 weeks long anyway due to budget cuts. So keep in mind that with his regression, he's already in an exceptionally fragile state and doesn't need more stress.

He has a history of intense meltdowns directly related to his autism and which are documented in school behavior reports. These are common in autistic kids who are easily overstimulated and can't communicate. I have a report that said he would 'destroy' his classroom almost every day. He does the same thing at home when he gets upset. The teachers are wonderful but he has such a low threshold thanks to his condition, and once he crosses that threshold there's nothing anyone can do. Once school starts and CPS contacts them, I know they'll tell them that there's no way you could keep a place clean all the time when Jared was in it. Of course, I ended up showing them that report and they didn't care.

He had already had one meltdown the day they came and I hadn't finished cleaning up yet. I explained his condition outside, and that having strangers around would set him off again but they didn't care. Sure enough, he had another meltdown before they even coerced entry. He was just acting out his condition but the policemen wanted to INSTITUTIONALIZE my son. It made me remember a trip to the hospital a few weeks earlier, where the psychiatrist on duty read to me from a form that specifically said institutionalization wasn't necessary.

I am on Atkins and kept a lot of meats in my fridge. But I quit using my fridge because I didn't have time to cook. With Jared's regression, it was just too hard. I had been fixing our meals from the chest freezer. They opened the fridge and she repeatedly alleged that what she saw was mold and I repeatedly said it was blood. My packages apparently leaked. I tried to explain that we hadn't been using the fridge in days, that I'd fixed frozen meals instead, but nobody listened. If you think about what I was going through, this makes perfect sense. I had actually started cleaning the fridge the previous night but didn't dilute the bleach. I ended up with bleach burns on both hands. I had given myself 24 hours to heal a bit before trying again. Instead of taking that night off, I'd cleaned out the cupboards instead. It didn't require cleaners so I just muddled through. In a nutshell, I didn't expose my kid to anything unhygienic since we weren't even using the fridge, opting for frozen foods out of convenience. And come on...when your kid is self-mutilating almost constantly, is your top priority really going to be chores?

I made the mistake of offering too much information. I guess I was trying to show how I keep him safe. I mentioned that I had to lock him in his bedroom at night for his safety. This sounds bad on the surface, but it really is for his best interests. She told me I wasn't allowed to do that. I insisted it was for his safety and that NOT doing it would put him in danger, but they didn't care. They made no effort to do any research to see if I could actually be right, which I am. There are several autism safety articles online that recommend this and I have talked to so many other mothers of autistic children who also do the same thing. His room is the safest place for him. If his room isn't locked, he gets up early in the morning and climbs on the counters (he loves to climb). He could slip and fall and bust his head open.

Here are just two articles that recommend what I did, and which they won't listen to:

http://www.charlesandhudson.com/home-se ... -children/

http://oreilly.com/medical/autism/news/tips_life.html

The social workers actually said that locking him in was a fire hazard. This actually isn't true. From what I've read on fire safety, a closed door will actually protect you if there's a fire and may give rescuers about 5 extra minutes to rescue you. And with my son, a closed door is as good as an open door...it has to be locked or he'll just leave. If there's a fire, I'd much rather him be locked in his room and the rescuers can come in through the window. He has no sense of danger and has an unusual tolerance and even attraction to extreme temperatures...he might actually try to go near the fire if he saw it. So yeah, another instance where they didn't think something through and actually put my son at risk.

This seems to be their main concern in the investigation now. They have repeatedly asked me if I still do this. I'm not going to put my son in danger due to their idiocy. They have also interviewed my mother and my 8 year old daughter and asked them about this. They are so insistent and yet they haven't even taken the time to do the research themselves! It is so obvious that they are not true investigators. They are validators. And they believe that they always know better than the parents, even when the parents have never been declared unfit. THEY are the ones that are trying to endanger my child!

Once they came while I was cleaning the living room. My son had had a potty training accident. He's had several of those since his regression. I hadn't noticed it yet because I'd, once again, been in the living room and he is allowed to go in his room alone. They asked to see his room and that's when we realized that he'd urinated on a blanket. They had the nerve to say something about unsanitary conditions and make note of it. COME ON. ALL potty training kids are going to have accidents, it's not the parents' fault! It's just a fact of life! Btw, I can't put pull ups on him because he rips them apart and eats them (he has pica). And I always clean up accidents as soon as I see them. I would have noticed the soiled blanket the next time I went into his room, which probably would have been in a few minutes.

They have come twice when I had dishes soaking in the sink. Apparently I'm not allowed to do this anymore but they always get upset about it. Come on, how is this endangerment? The last time, they accused me of lying about how long they were in there. I often soak dishes to help my old dishwasher work better. I had the portable dishwasher on while they were there. I was soaking the next load. Apparently they smelled and they assumed they were old. I found out after they left that my son had thrown poop in there and it had sunk to the bottom. That's where the smell was coming from. I know this also sounds bad, but it's very common behavior in autistic kids and he has done it before. He must have done it when I was out of the room. Go to this page http://perseveration.org/?p=75 and it says that feces smearing is common. It's not supposed to be considered neglect, etc. My son sometimes smears but usually throws, basically same thing though.

I have devoted myself to my son and the consensus between his teachers and the doctors who have treated him is that I'm doing a great job. I'm really frustrated though. I feel like they've set me up to fail. His teachers will tell you that you can't have a perfectly clean house at all times when my son is around. Of course, any actual mother will tell you the same thing. I'm living in fear that they will show up again right after Jared has had an accident.

Oh yeah, back to the threats they made during their initial visit. The cops wanted to institutionalize him. I had warned everyone ahead of time that their mere presence could set off an autistic meltdown and sure enough, he had one. Everything they saw was literally part of his condition and I even showed him his school behavior report as proof. What they threatened literally amounted to holding his own disability against him. Later they were saying they were going to put him in foster care. They did attempt kinship care at first but I didn't have any relatives who could take him.

How was that in my son's best interests? He is AUTISTIC. These kids hate having their routines changed. Being ripped apart from the person who understands him the best and put with a stranger? Really? It would have deepened his regression! Plus, I believe he would have been such an easy victim in a foster home. He's nonverbal so it's obvious he wouldn't be able to talk about any abuse. Plus, he was already self-harming so he could be physically abused without it being obvious. There were probably 15 minutes where I thought my SICK little boy was going to be ripped away from me while he was in a very vulnerable mental condition, can you imagine the anguish? They were all set to take him but apparently a supervisor decided against it. One of the social workers flat out told me that my son would be gone if it were up to her.

Due to his extreme condition this summer, I've taken him to his doctor 3 times and the hospital 4 times, plus 1 psychiatrist visit. I'm not very close to our regular doctors and in fact want to switch. The hospital doctors treated us better and they all made off-hand remarks about how my son was best served by being home with me. They didn't know of the investigation. They were impressed and said I was a good advocate, that my son was generally healthy, etc. He always got a medical and psychological clearance to go home. They said that he would be best served by being at home with me, instead of staying in the hospital for tests they didn't think he needed, etc. Unfortunately I don't remember their names, I wish I did. I don't know if they'd feel comfortable writing anything in my behalf to CPS though anyway.

I've posted more details about the non-medical stuff in the Sue Them! and Investigations areas. I'm so distraught about all of this. I'm set up to fail. Nobody can prevent the things they want me to prevent, at least not all of the time. They know that I've begun taping our conversations, hopefully it'll lead them to being honest at least. I am itching to sue but can't until the investigation is closed, ugh!
My children have never been harmed by my actions. My children both love me and trust me. Even my nonverbal son shows he trusts me by how he interacts with me. We didn't deserve what we've gone through because of CPS. We demand justice.

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LindaJM
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Re: My autistic son & CPS

Postby LindaJM » Sat Aug 14, 2010 8:06 pm


You're an amazing mom! I had a child who was diagnosed with Asperger's Syndrome and experienced a lot of similar behaviors... so I pretty much know what you're going through. You're absolutely right about the lock on the door, but that's something the CPS worker has latched onto to use against you. Can you lock yourself in with him at night? Wouldn't that satisfy the CPS worker's request while keeping your son safe? My kids went through a phase of climbing on counters and even the stove. Scary! And are parents ever able to watch over the kids 24/7? Well, no, of course not because we need to sleep too.

I was so stressed for years... and never could find a babysitter who was able to take care of my child... and my family members wouldn't do it. Sound familiar? Talk about being put through the wringer. There is NO good substitute for what you're doing for your child out of sheer determination and love. I'm so glad that supervisor was savvy enough to realize that.

Are you collecting evidence? With my child I had a box full of documentary evidence on what was really going on in case I ever needed to use it. I included doctor reports and school records, suspension slips, etc. Everything I could think of to show I was doing my job in very trying circumstances.

I finally got tired of all the problems at school and decided to homeschool. That helped a lot... for a while.

Bear with it (the investigation). I'm thanking God that the supervisor didn't want to take your precious child into custody. Keep your cool around those caseworkers. Don't give them any more reasons to be against you. Try to show them you're trying to do as they ask and that you "appreciate" their concern. (I know, tough order!) CPS caseworkers want to be under the delusion that they're appreciated even though they're violating privacy and destroying peace of mind. Now that they have a foothold in your life they may be hard to get rid of.
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Please keep in mind that none of us are lawyers and we can't give legal advice. We are simply telling you what we would do in a similar situation. It is to your advantage to get a lawyer.

"Evil flourishes when good men do nothing." - Edmund Burke ... so try to do something to change the system ...

angelheart83
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Joined: Tue Jul 27, 2010 4:12 pm

Re: My autistic son & CPS

Postby angelheart83 » Sun Aug 15, 2010 8:58 am

I looked for alternatives before locking him in his room to begin with, but it had just become apparent that it was the easiest and best option. Sometimes he is willing to sleep with his older sister in the room, who knows how to unlock the door in an emergency. Right now he's going through a phase where he will not sleep with anyone in the room...just knowing they're there keeps him up. So my daughter is sleeping in my room for the time being.

Yeah, they keep insisting that this is dangerous and have refused to even look at evidence to the contrary. It's the main thing they ask about now when they come over or interview people. It's ridiculous. Just doing some research would find those articles I mentioned plus I think a few others. Plus they could find several message boards with mt others of autistic kids who have done the same thing. Plus, there are articles that say that they are WRONG about it being a fire hazard at all! These people can't investigate at all, they merely come up with 'theories' and stick to them. I have secretly still been doing it even though I say I'm not...I am NOT going to put my son in danger just because of some ignorant people who think they know better without even doing research! I put so much thought into every decision I make, I have weighed the pros and cons and this is definitely the best thing for him. I have never been ruled unfit by a judge, I thought I'd be assumed to be acting in my child's best interests. :(

I didn't get to record the first three visits but I have FINALLY gotten my camera to record movies lol. I live in a state where only one party has to consent to taping, thank GOD. So I had out the camera and didn't even bother asking their consent. I think it's kept them at bay because they knew there would be a record. It is bugging me TERRIBLY that I couldn't record until now!

I am worried that they'll get a court order to interview my daughter alone. They interviewed her on Friday. They actually asked to take her outside to talk...HELL if I am going to let my kid go outside with them! I stated that she had a right to have her parent or a lawyer present but one of them said that they'd eventually need to interview her alone, which makes me suspicious they'll get a court order. She was nervous and her normal bubbly personality didn't come through. I suspect they'll try to say she was 'fearful of telling the truth in front of her mother' when in reality, it's just nervousness about spilling her guts to perfect strangers. Why can't they get that?!

Oh, I do homeschool my daughter, which they know about. If they make a new allegation regarding homeschooling, HSLDA has to help though. For a while I worked with my autistic son myself and actually had many successes. Then I got him homebased therapy for some extra help. I didn't enroll him in public school until last November. His homebased therapy was eliminated due to budget cuts and a weird new definition of mental retardation in which he didn't qualify anyway. I was fearful of enrolling him but decided to at least try it. The local school did seem really nice. Due to his autism, Jared is immune to the social problems of public school...otherwise I couldn't in conscience send him. I haven't been able to get in touch with his teacher yet but I'm sure she and the administrators will all vouch for me. They have dealt with Jared every day before and they know there are certain behaviors that are just beyond control.

In the meantime, I'm really stressed out. Autism is so stressful to deal with, but CPS is even MORE stressful! I feel like I can't put any chore off for even a few minutes...what if there's another surprise visit? I'm afraid of every knock on the door and every sound outside my house. This is actually my 3rd investigation, and my daughter and I had never even healed from the others...and now we have even more stress. Unfortunately, several people have disagreed with things I do for my children and it's caused a lot of trouble. People especially don't understand what goes into raising an autistic child and keeping him/her safe. The 2nd investigation revolved around that...someone said I drugged both my kids with Nyquil to make them sleep all the time! In reality all I did was give my SON melatonin supplements (which his doctor knew about) to help him sleep because he had major sleep issues and wouldn't fall asleep without them. I am constantly shocked at the way people are willing to judge and then even exaggerate things...and how willing they are to risk family unity just because they don't agree with certain things!
My children have never been harmed by my actions. My children both love me and trust me. Even my nonverbal son shows he trusts me by how he interacts with me. We didn't deserve what we've gone through because of CPS. We demand justice.

cambreenellie
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Re: My autistic son & CPS

Postby cambreenellie » Mon Aug 16, 2010 10:27 am

My daughter was diagnosed also with Asperger's so as with Linda I too know what you are going through. I tried various methods to keep my daughter in her room at night and nothing worked. We went from 2 baby gates stacked upon each other, motion detector and an alarm that went off when opening the door. She figured them all out. I can say that I never reversed the door handle to lock it from the outside as I thought I would draw so much slack from CPS. They think they can come in with these ideas on how to protect your children but little do they know you've been there and done that.

When I had a therapist coming in my home to work with my daughter they would give me tips from a parenting book on how to discipline and keep a child safe and all I could do is laugh. Half the stuff they recommended would not work with a special needs child. The therapist and CPS could not understand how my child could not learn from her mistakes by having a time out and sitting in the corner. Idiots I tell you!! They will never know until they walk in your shoes.

Finally, they started to understand that it's not as easy to control a special needs child as they thought when my daughter ran away from home and crossed a 4 lane highway at 4 in the morning. After charging me with neglect of supervision (by the way I was sleeping duh!!) they allowed me to go all out in order to keep her safe, this included letting me switch the door handle around so I can lock it from the outside. Go figure!!!

angelheart83
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Joined: Tue Jul 27, 2010 4:12 pm

Re: My autistic son & CPS

Postby angelheart83 » Mon Aug 16, 2010 12:59 pm

When I read about your daughter's nighttime escape, it immediately made me think of an article that just so happens to be called Autism 101 for Mandated Reporters. I included a link to it in my first post at the top of the page (perseveration is included in the link). It has a statement that wandering is common and isn't usually neglect. I have been there myself. There have been several times where my son figured out the locks and escaped outside. To make things even worse he usually stripped before leaving (clothing sensitivity issues), so he would be running around outside naked. Luckily the neighbors were very understanding, until recently. :lol:

I just wish we could be trusted to make good decisions for our children. Don't they realize that in our minds, we have already gone through all the options and weighed the pros and cons, and THEN made the best choice?! They think they can come into the situation and suddenly know better than the ones that live it every day. And you're right, many things that work for 'normal' children just won't work with special needs children.

It really irks me when they insist that parents find an alternative to spanking. Spanking is legal and is therefore a viable option. My neurotypical daughter went through a rebellious phase last year when she was jealous of all the attention her brother was getting with his developmental therapists. It was the spanking that eventually taught her how to act! And as for my autistic son...spanking is the only method of discipline he can understand at all! He wouldn't understand a time out or having something taken away from him. But he does understand a swat on the rear. *wink* I am surprised that my spanking hasn't come up in this investigation. It came up in a previous one. The reporter stated upfront that there were never any bruises or other markings from the spanking, so what was the problem? I was totally within the law.

What really makes me furious is that CPS can investigate you for things that aren't even illegal. I believe that if something isn't illegal, the government shouldn't be able to investigate it. What is there to investigate if there isn't an actual crime?! It really ticks me off at the things these people are able to get away with, often without ever charging the parents with actual crimes.
My children have never been harmed by my actions. My children both love me and trust me. Even my nonverbal son shows he trusts me by how he interacts with me. We didn't deserve what we've gone through because of CPS. We demand justice.

susanheffley
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Joined: Sun Jun 29, 2014 7:53 pm

Re: My autistic son & CPS

Postby susanheffley » Tue Jul 22, 2014 7:42 pm

It's disgraceful, instead of helping people they judge and make accusations and they don't even know about ASD, I had the same sort of problem I took all window handles of to stop my son climbing out the windows especially the upstairs ones, no sense of danger and impulsive, and this was a fire hazard even though I myself could still get windows open in an emergency. I removed handles due to safety and was told I was creating a safety hazard and I was ordered to put them back on until I got key locks next day, I told them if my child climbs out of an upstairs window be it on your reccomendations, there was a real chance of that compared to that of a fire, I couldn't take my eye's off him until I got locks which weren't easy to get they had to be specially fitted. Every time he went upstairs I had to drop everything and race up their, my heart was in my mouth, and this happens a lot when your child also has ADHD, hyperactivity, I know any mother going through what we are deserves a medal, it would be easier to work non-stop day and night in a job, than it is to stay at home and manage a child with ASD and neurodevelopmental issues, give them 1 day they would never last, but have the cheek to judge us, keep every report or document you ever get, if they contridicte or try to change reason for behaviours you can refer back to them, if they tell you it's their opinion, tell them you will be legally investigating the doctors opinion, as they are saying he is wrong.


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