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Mixed Feelings
- Apr 17, 2010 at 4:03 PM
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Quite honestly I am feeling sad, angry, lost, hyper, out of control, resentful, hate none of this is nice at all. I have to get it out now as I sit here with this huge lump in my throat, upset stomach and tears in my eyes. Every child on the spectrum is different and every child will learn and respond in a different manner....I get it. I'm just hanging on to the last thread of my rope right now until I can muster up a thicker, stronger one. It has been 4 years since we received our daughter's initial diagnosis of moderate to severe Autism, ADHD, & Sensory Disorder. I should be over all this by now. I have done the research to get started with therapies, I have fought to get her services and placement, we are constantly working with her.
My daughter Melanie is 7 years old, she has the most beautiful blue eyes, heart melting smile and can work the TV / VCR and DVD player like she invented the darn thing. She currently attends Summit Educational Resources which is a school that specializes in children with Special Needs and mainly Autism. She attends a 6:1:1 classroom and has individual Speech & OT Therapies 3 times per week along with group settings. Melanie has an extreme difficult time with loud noises and children crying. When things get out of control for her (over stimulation) she is allowed to ask for a break using her GoTalk and then she is taken for a walk outside of the classroom. Melanie also has a Behavioralist as a part of her team and we have recently had a Functional Behavior Analysis done to put a Behavior Plan in place both at home and in school. The plan has been in place for two months now. Melanie loves to be outdoors, in our yard she can choose from regular swing set, trampoline, sensory hug swing, riding on the tractor or just running with the dog.
So why, why might one ask the feelings stated in the beginning? I don't know right now what to do anymore, I don't know how to get through, I feel like every moment is either a huge battle, meltdown, trying to discipline, trying to teach. My husband and I are very frustrated, sad, wanting to find a way to have some happy moments with her. Yes she is only a kid - I know and does things kids just do. There is also the constant destruction, non-compliance and defiance. I try my best to teach her to follow her rules - they are pictured on her board, reviewed several times through out the day, she is told what a good girl she is every 15 to 20 minutes when she follows her rules and if she does not we get down to her level tell her what she is doing wrong and remind her of her rules again. We also work on a 5 token system so she can earn "things". Some days this is all great and other days it's like we never work with our daughter. Her behaviors at times are attention seeking which is very difficult for me to understand because I am with her constantly - yet the minute I take a break to go to the bathroom or cook supper she is doing something destructive or that she has been told not to do like shoving her stuffed animals in the fish tank. We have on and off issues with toileting, especially bowel movements and the occasional desire to stand and pee. She is very food & beverage specific and getting her to sit at the table to eat is like pulling teeth. I can get 2 to 5 minutes but that is it and only on a good day. Melanie is very fast and very very strong for a 7 year old child. There are times when she will bite too. In one weekend I had over a dozen bruises on my body from hitting, kicking and biting me during meltdowns, moments of frustration and just being angry. There are times when it really breaks my heart.
We have been trying many different methods and ways to get through to Melanie and yes I will admit she has made some progress from her initial diagnosis to present. Somethings have stuck with her and other areas she has regressed in to the point that I cannot get it back. It is so frustrating to start the day right away doing something she is not supposed to, standing in front of me and just peeing or destroying an item. This is the precedent set for the entire day - just non stop. I try to redirect her, keeping calm when I am talking to her etc. Just when she keeps going and going and going and I can't stop her - I don't know how to handle it anymore - nothing works! I hate it, I feel like I will never get to do things with her. I tried and waited 11 years for a child. I know I have to find a way, her way but in the process here I am failing as a parent because I can't even get through with simple day to day do's & don'ts. How in God's name am I going to make it through the rest of our lives together? What is going to happen if I don't get through? I know I am not the only mother / parent dealing with this. I just can't fathom being in this moment out of sync and think about a year, two, three years from now when I am going to have puberty & high school and then beyond that......how am I going to get through this? I want to and have been trying right along to get a hold of things and help my daughter. It just keeps coming back around to kick me in the ass. Where do I start from here now? I need to find a whole new plan that WILL work. Time to put these negative feelings in a box and send them on their way. Felt good to get this out unfortunately I still feel that lump in my throat and the tears in my eyes. Maybe tomorrow will be the fresh start and a new plan to get things progressing.
Comments:
Gosh Missy, I have been there. I mean RIGHT there, where I just want to curl up in a ball and want everything to go away b/c there is just no visible solution in sight.
Well, I'm here to tell you that's not how it really is. I know from where you are standing, it looks and feels that way, right now, but trust that it changes, it really does.
Honestly, don't worry about puberty now. It's just too much to handle at this point, and it's not the problem at hand, so leave that for another day, a couple of years from now.
I would suggest that you first, put yourself in a different state of mind. At least that is what I did. If no one was hurt or dead, then I chanted "no big deal". I had to go back to basics per se. Really, in the grand scheme of things, a wet stuffed animal is not that bad. So, it goes in the garbage and prob solved. Now I know it's frustrating, I hear what you are saying, that you work and work w Melanie to no avail, BUT, now is when you REALLY have to choose your battles with her, and I would say at this point, her peeing while standing infront of you may take presidence to the stuffed animal in the fish tank. Again, I am not minimizing it at all, just trying to help you simplify, if you will, and concentrate on one or two things that really need work, b/c honestly, to add the others to it, is just entirely too overwhelming.
I'm so happy to hear that she has a behaviorist on her team and that she's had an FBA done. What did it conclude and is the solution working for you at home? If not, you need to document the probs if you can, or video them and meet with the behaviorist asap.
What is your reaction to Melanie's attention seeking behavior? The fact that you are with her CONSTANTLY, may very well be contributing to what is bringing on the unwanted behaviors. With B, I had to just completely ignore her. No eye contact, no verbal reprimand, NOTHING. I would acknowledge her verbally if she was trying to get my attention, but I wouldn't engage and leave the room if possible. Does that make sense? I also found that alot of B's attention seeking behaviors where a form of protest, or ways for her to negate something she was being asked to do. In that case, you could speak to her speech therapist and see if she has any suggestions.
You say that when she does not follow rules, you come to her level and tell her what she is doing wrong. That part right there never worked with Bianca. With Bianca, we NEVER aknowledge the unwanted behavior. It is completely ignored and she is just redirected. This has seemed to work. It's almost as if reiterating the unwanted behavior and then redirecting her to the correct one confused her, too much info. That in turn frustrated her and we had an entire new set of probs.
Token system; what is she working for? Are her likes limited, or does she have many interests? How many choices does she have as to what she will earn? And are the reinforcers strong enough? One thing I recently tried w B was a "BOX". It was a shoe box, full of odds and ends that I knew she liked, and she got to pick 1 thing out of the box after earning 9 stickers (first 3 was a piece of gum, 6 stickers was another piece of gum and when the chart was completed w 9 stickers, she got her choice of one thing from the "BOX"). It gave her the liberty to choose what she wanted, in a way where I still had control of her choices.
Sitting to eat; have you tried a digital timer? If so, is she capable of setting it? B was on a program for that and once she learned how, she was much better about using one, b/c again, it gave her a bit of control in the situation. I would tell her to "set timer for 5mins" and she would do it and was more compliant about staying on task till the timer went off.
Standing infront of you and peeing; what is your reaction to that? Assuming it is attn seeking, would she clean up the mess if you gave her paper towels, etc? I know she wouldn't really be cleaning it and you'd have to do it properly yourself anyway, but perhaps if she knew that was going to be what she had to do if she peed, it might make her think twice. Do you change her right away? If so, what if you had her stay in the wet clothes for a little while? What do you think her reaction would be? Again, this is just assuming it's attn seeking.
In general, when B was that age, I found myself not verbalizing alot and just reacting to her, with no words and as much disconnect as possible when it was unwanted behaviors,almost robotic you an say. My hubby would go mad when I did that b/c she resorted to biting herself to get a reaction out of me and when I would get up and leave the room, she would follow and put her face in mine and bite her hand/wrist, whatever. She was leaving bite marks on herself, but I didn't react, and would avoid eye contact and turn my back on her if possible so she was sure I wasn't watching her. Eventually she stopped. It still pops up here and there, but I go into my mode automatically and now she recognizes it and reconsiders her actions.
I am making these suggestions to your b/c that is what worked for us. I hope you know that I think you are a wonderful mom and I can see how much you do for Melanie. I understand that all kids on the spectrum are different of course, but I hope that my experience can be, even a little bit of help. At the very least, just know that you are not alone. I was there and I still sometimes am. Fewer times than before, but also more intense than before.
If you need to chat or vent, I'm always here!
I also wanted to mention (as if my comment wasn't long enough), that in my experience, girls on the spectrum are SO head strong. I have found that psychology plays a huge part in dealing with B. Unfortunately for B I am very head strong as well, but I do also need my own time outs. Just thought you should keep in mind.
hugs
I totally agree with V. Also having a girl and working with a few girls on the spectrum, girls as not only a different ballgame...the whole freaking park just moved!
I was also thinking that any reaction may be giving her exactly what she is seeking in her behaviors. Also 15-20 minutes also seems like a long time to wait for a reward.....but again I am not sure what you have done up to this, if there has been a slow build-up to that time frame. But I always found in teaching my daughter at first, fast and immediate rewards "marking" the behavior worked best.
I was also going to reiterate the cleaning up with bathroom accidents. If you are doing the cleaning and changing then there is no consequence....maybe the consequence alone will make it not worth it. It works for some kids, maybe worth the try?
Also as far as the bathroom/making dinner issue, I would teach her to do a bin to bin activity. You have (obviously) 2 bins If you cant buy a red and green one then I would mark two bins with a green and red piece of duck tape or construction paper. But three activities in the green "to do" bin and what you have her do is take out an activity, complete it and move it to the red "all done" bin. This is first taught with as many prompts as needed, whether it is hand over hand or point prompts to remind her what she needs to be done. A visual schedule can also be added to help her keep on track if need. And even though as first you may have to be next to her, within a week to two of teaching my daughter, it bought me 15-20 minutes time when I needed it. And make it activities that she likes to do: drawing, puzzles, sticker book, beading, any manual thing that she likes to engage in.
Hope that helps!
Thank you ladies for your comments and suggestions. One thing I have heard a few times and here as well is that the girls are very head strong. Man oh man is this the case here. Many of the things mentioned here we are already doing such as her "token board" with a visual of all her rules. She can earn 5 tokens and then choose from the special bin that is only for if she earned her tokens. This bin has things she desires. We use the timer and show her start, in between and when it beeps to where she has earned her token. If she does not follow her rules the timer is stopped show her, review the rules again and restart the timer.
I have definitely determined when she is seeking negative attention from me and have done actual ignoring and turning my back to her so long as it is not something that is harmful or dangerous to her. She constantly laughs when she is doing something wrong and if I try to correct she runs away and laughs even more. I follow through with all directions, prompts etc. to the point one day it took an hour with prompting, HOH, nonverbal etc. for her to pick up something and throw it in the garbage. First I will verbally direct her to do something, she will run away laughing, I will go bring her back nonverbally and point to what she has to do, again runs away laughing, get her bring her back and HOH prompt again nonverbally.
Veronica I have to say so much of what you have said applies. Melanie does the biting of her knee just the same as you have mentioned as well. She too is the same if I turn my back to her and try to walk away she will follow and try to get me to hug etc. She will even go rip paper and shove it in her mouth right in front of me. Drives my hubby nuts but I refuse to react to that any more and eventually she will spit it out. I will not allow anything that will harm her however.
I just need to find a way now because if she is this tough and head strung now - what about a year, two years from now. I know I need to better learn how to choose my battles but on the same note I cannot allow this child to run amuck either. Maybe I expect too much at one time - Cadyrose pointed out the reward time frame may be too long. I started out in 2 to 5 minute intervals and maybe it's time to get back to that and rebuild so that Melanie can again learn and realize the importance of her rewards. I also like the suggestion of the bin to bin. She currently works with an activity schedule both at school and at home as well.
Again I would like to thank you for your assistance ladies.
I feel fo bad for you...going threw the same us you trying to get threw the day....but my husband and I are always saying WHY US... but alot of people have told us...GOD decided to give us a child like this ...he knew that we could take care of this child no matter how bad the situation is cuz we would always give this child special loving care...I'm here for you...there are days I could jump in a hole and die...but you have to look at your child and say I love you and the look on there faces is to die for....just hang in there and everyone on this cafemom will help you there it as the same for us....Good Luck....
Missy,
Just wnted to offer you (((HUGS)))
Yes,I have girl on the spectrum,yes the earlier days were hard but as V mentioned-they will progress forward,But as you know each child is different,and I admit I have been blessed with a compliant girl on the spectrum-I was reading the other replies of how girls are so head strong,and Z isn't. But every human is different.
I remember 7 backsliding at 7 in the areas of bedwetting-it took several months of earning a quarter a night for each night she staid dry until she earned enough for a new Webkin,,,,then she'd start over-but it finally clicked again (she had been dry for a year prior).
Z's now 10 and has progressed so much from where she was @ Melanie's age-and though you can't see it now-in a few years instead of Oh God-how will we get through the next stage-you'll look back and go-WOW-we made it through THAT stage.
Just remember-children on the spectrum-their chronolgical age and comprehensive age are not the same-Melanie may be 7...but cognatively she could be 3.5 or at times less... But you n she will get to a point where things will click.
Many (((HUGS))) my friend-I know you will make it through. You are a wonderful mommy,please don't ever doubt that.
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((((Hugs)))) honey!!! some days around here are better then others. I dont have any advice at this time but I wanted to know I am thinking of you!! lots of love my friend~tracy xoxoxoxoxoxox
- ilovematteo170
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