ADHD, Sickle Beta-Thalassemia, Pica, Possible Autism? Tearing Clothes & Sores

FrustratedFather

Hello, My daughter is 8, she was born with a spot on her brain the doctors never investigated any further and almost seem like they wanted to hide it or not address it, we only found out because we demanded a scan, she has ADHD to the point if you tell her to do something or stop doing something she will say she got distracted or do it again not even 5 seconds later, on top of that I have potty trained her since the age of 2 teaching her how to wipe, flush, wash her hands, brush her teeth, and all of the important things and I still do, she seems to get most of it except she doesn't wipe or flush and lately she has been using the bathroom in her room in anything that will hold it, she also has Pica because of the sickle cell, and she is now tearing clothing of all kinds, undergarments, shirts, pants and just last month her bed she pulls the orange stuffing out of it, I have paid $130 in underwear last month from Dollar General and now she doesn't have anymore, her clothes are running low and when she goes to school she rips off all her clothes, we get phone calls every day about it to the point she comes home with another child's clothes on from the lost and found, she is on her 3rd TV, 4th tablet, 3rd phone, she breaks things like the computer mouse, shaves stuffed animals, rips her bed sheets, destroys the blinds and can have tantrums in the middle of night 3-4am, pulls out her own hair, cuts her hair, if I give her one simple task she fails it every time, she gave the Dr.'s such a hard time at her Autism appointment that they canceled it after we've waited a whole year for it, I've tried positive reinforcement and gentle parenting and also taking things away and time out, nothing works, she does it wherever we go, she'll try to eat rocks, dirt, and other things she shouldn't have in her mouth, she is a very picky eater that doesn't like the same foods even if it's her favorite, she comes home from school with rocks in her shoes, the school told me she's very smart and reads grade levels above her regular classmates and is very articulate, she is very clumsy and if she runs on the concrete she may fall and not even brace herself, I just don't know what to do anymore please help!

Jimm_Scope

Hi @FrustratedFather, I can understand the username given what you are going through! I'll just start off by saying that this is a UK charity site, so it may not be entirely helpful due to the different system we are often under. You mention that the Autism appointment was cancelled, was it rescheduled at all? If there was so much disruption they cancelled the assessment that surely should point to her needing more help?

Are there any local government resources available at all as well?

FrustratedFather

Hello @Jimm_Scope, I'm not looking for charity…it's more like advice that I'm looking for ideas as far as trying to curve some behaviors or discourage bad behavior if I can, maybe a little advice on different types of clothing to buy, mainly her under garments, maybe someone can tell me what condition she may have that isn't mentioned as she is undiagnosed, they did reschedule they wanted her to see a behaviorist first but I think they're going to make us reschedule for next year anyway, to me it seems like something on the severe side of the spectrum of autism, as far as local government they like to make people jump through hoops or what I like to call mandatory time wasting/run around or "red tape" and to me none of it helps it just racks up more pay from insurance that goes in their pockets.

Jimm_Scope

I understand the insurance system there is incredibly costly and profit motivated. I don't have any ideas to mind myself about how to help with the clothing issue unfortunately. I'm amazed they're letting this slide for another year, is there no way to cause expediency given the issues you are facing at all?

I know I'm probably just suggesting things you've already tried or thought of. I'll try to give the clothing some thought @FrustratedFather, hopefully some other members may have ideas too

FrustratedFather

I have insurance for all three of us, it isn't expensive if you pick the right kind of insurance, I'm currently looking into getting things up to speed but over here people often go undiagnosed for years making the journey very uncomfortable and embarrassing and they find it harder to diagnose girls than boys, thanks for at least responding to me, I ran across this site doing a google search, it seems I get the best advice from this forum and is often a top choice for people with similar issues while anywhere else is vague.

Bipsy

my 18 year old still won’t use the toilet. I buy underwear and men’s diapers. Did you try diapers? Do you grab and hold her until she calms down? Our therapist taught us that method and it works, but nobody likes it. Around 8 years old I had a box of dollar store stuff and if he used the toilet he got to pick a toy. It worked! Until after a year he wasn’t into toys for $1. Maybe it will help your daughter. It’s impossible to discipline these kids and nobody understands. Good luck!

FrustratedFather

@Bipsy My child doesn't like to flush or wipe she's in a rush to get back to whatever she was doing, I got her to use the toilet she just doesn't follow through with the cleaning part so no diapers, the whole in her room thing I get the feeling it's due to pica so I definitely watch that, I'm disabled so it's hard to keep having to get up every time she does the tearing of clothes, she'll try and sneak and do it too, the discipline part is what annoys me the most because everyone wants to be her enabler so now she is manipulative based on that alone, she does this thing where even if you talk to her in a low tone she'll complain her ears hurt, took her to the doctor no ear infection but she can scream to the top of her lungs at you and then I say "doesn't that hurt?" she says no, that's the sort of manipulation she's into now

FrustratedFather

@Bipsy Also rewarding doesn't work anymore and I don't want to make it part of her expectations every single time because what she'll do is less or half while expecting more, we tried that with desserts to help her finish her food and she'll just let the food sit there now and never finish

Doris_Scope

Hi @FrustratedFather,

My name is Doris and I work for Scope. I am a family advisor and support families of disabled children.

I can see that you are dealing with so many different issues, you must find it difficult to know where to start.  From your first post, I can imagine how worried you must be to see your daughter struggling so much.

Many children with ADHD and autism find it hard to stay focused on one job or activity. Unless of course it is important to them.

As she was flushing and wiping before, has anything happened recently to change her behaviour? 

Visuals can be the best way of reminding children to stay on task or follow simple rules. You may have already tried these with her.

Backward chaining is the best visual way to teach something. You repeat the steps with your daughter over and over again and then take out the last step so that she can do it on her own.  You then work backwards, removing each step until she is completing the whole activity on her own. 

Visuals can be, ripped or even eaten, but making them as indestructible as possible is best. Also persevering.  Try to make the visuals as interesting as possible by using her interests.  If she loves animals, use cartoons of animals flushing the toilet.  Unfortunately you may have to be a bit creative with these.

Make the toilet or bathroom as child friendly as possible. Again, use your daughters interests to encourage her to want to be there.

Rewards can be sometimes work but need to be immediate. This can be expensive if you are giving them often so make them as small as possible.

With regards to the Pica, do you carry a Pica box with you?  You would need to look at the things that she often eats and try to find appropriate items to replace them. When you think she might eat something inedible, give her the box or something similar from the box.

With regard to her bedroom, you may have to make it as minimal as possible.  Have you accessed any sleep advice if she is waking up in the middle of the night?

As she is ripping her clothes, have you asked for a sensory needs assessment?  She may be uncomfortable in her clothes and sensory needs can change over time.  Children can often have pain from hearing sounds but will make loud noises themselves.

Have you seen the Additude website? It is great for articles, webinars, and information about ADHD. You can sign up for free.

I have added few links below for you to have a look at. Alongside the Additude website, there is information about Pica Boxes. There are suggestions for some possible replacements for things your daughter is eating. There is also a link to teach backward chaining.

I may be telling you many things that you have already heard, but I hope that some of this is helpful.

ADDitude

Pica Information Sheet

Possible Replacement Foods for Pica

Backward Chaining Technique

FrustratedFather

Doris_Scope Yes, I have tried everything from giving her books to read, instructional videos, to her mother instructing her step by step, this week she started doing #1 and #2 in a large clothing bin in her room and covered it with the cushion from the inside of her bed then put a lid on it, we got a ton of gnats because of that and currently it's around 100 degrees outside and we started smelling ammonia and mold and then I found it, I often have to remind her to go back and wipe, flush, then wash hands, standing at the bathroom door, she'll run out of there still pulling her underwear up if I don't watch, it's like I can't take eyes off of her for even a split second because does something else, I caught her yesterday biting her bed and I got her to stop after saying it a few times.

The only thing that has changed is she went to school one day last November and said some things to adults there that caused us to be under investigation, she was temporarily removed from our home for the next 5 months until they figured out she lied to them which I think she was coerced into doing so as they probably interrogated her for hours (the lie was she is forced to #1 and #2 in her room and that we abuse her until she throws up) they came over our house and saw nothing like that then months later she started actually doing the first thing she mentioned as she felt bad about the lie when we asked her what happened, so in a sense it seems like she was thinking about doing that to maybe not make the lie a lie anymore!? I don't know but that whole situation caused a great deal of stress on us as well as her.

She would call us from her grandmothers house crying to come home and kept saying she is sorry she lied and we had to explain to her that it is nothing we can do until they sort the situation out and then she can come home. Her being taken out of the home is what caused all of this behavior to start happening, she hits herself and I've been noticing right before she is about to do something she shouldn't she gets this bewildered look on her face and twitches, then it's the clawing at the couch, the tearing of clothes, and other wild behavior, the bathroom is located right next to her room we keep the lights on in the bathroom at night and give her a night light in her room so she isn't scared as sometimes she says she is seeing things or shadows and will scream and run loudly 2am and beyond, even when everything is okay sometimes she will still do it (her uncle on her mothers side has schizophrenia and over all her mothers side has the mental illness).

As a reward for good behavior she likes snacks we have 56 small bags of chips in variety in a 2 large boxes but we even monitor that because she'll try and sneak 6 bags back to her room in the middle of the night and it wakes us up, we have taken her to and still participate in a psychiatrist, a therapist, and numerous social workers as well as doctors, melatonin works when it wants to unfortunately, I have asked her as well as the doctors on numerous occasions what exactly seems to be the issue she is having with sensory and clothes and it varies but right now it appears she does not like clothes and prefers to be naked, however we tell her that she can't make that a habit everywhere she goes, so I have looked into a sensory vest to keep her from ripping clothes and I found some under garments she doesn't rip so I guess that is progress, I still don't know what to do about her bed and her tearing that up besides maybe invest in some sort of sensory tent, thank you for the links I will surely use them to better educate us with her issues.

FrustratedFather

Doris_Scope I have read through all of your links, it appears we have been on the right track all along, from PICA to the backwards chaining technique, with PICA it's about texture of foods and consistency, when training her we go through the steps exactly as it was written without us really realizing it but I'm now thinking she may be a few years stuck behind in who she wants to be due to her conditions, she is trying her hardest to grasp a few things so that she can progress, for example teaching her to tie her shoes took a couple of years, often.. when she's trying to do things she see's other kids able to do at her age she wants to do things independently like them before gaining the knowledge at times (trying to leap ahead) so we have to explain to her that if she forgets a step it is okay but we encourage her to remember and watch carefully and then we go through the steps again together, the best method of teaching any child is repetition although it can become an issue because it takes up time before important appointments or school all while trying to prevent her from her urges to do destructive things like tear up the clothes she just put on, sometimes she'll rip the clothes forcing us to stop what we're doing and help her put on a fresh pair of clothing, but her Dr's appointment for autism was interrupted by her behavior so now we have to wait another year and to be honest based on her behavior they should have diagnosed her the last two times we tried to figure out what was wrong especially the third time she went, they said "she is too smart" which confuses me because most children who are autistic usually are very intelligent, which makes me question their job/degree, I most certainly don't think she is masking it at all coming from someone who spends 90% of the day with her, I think they may just be milking the insurance because even when we're not seen, the appointment is cancelled, or like last time called off in the middle of it they still get paid, their excuse was "she's not cooperating" and they felt that she should have more appointments before coming back so…another year it is :(