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Old 01-13-2012, 03:51 AM   #1
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compensating for special needs

My dd has adhd/spd/tics. She is a highly sensitive child and in the past few years we've compensated for her issues. For example, I know she doesn't like people in her personal space, so at our homeschool group I make sure she can sit at a table without other kids sitting by her or making sure that she gets a special pass when we are at Disney, etc. At home, I try to avoid meltdowns by being very specific when we do things and not changing them. Like always putting her pill in an inch of lemonade for her to take in the morning or letting her wear the same five outfits all the time, etc. After yesterday's fiasco, I'm worried that I am doing more harm than good.

I had to get a steroid shot yesterday early morning. My friend came over at 7. I asked her to give my dd her pill at 8. Well when I called from the waiting room at 8, I heard a lot of commotion. DD was screaming in the background that my friend put too much lemonade in the cup and that she wouldn't take it because my friend was watching to make sure she took it, blah blah. I tried to talk to dd on the phone but she was absolutely hysterical. When she gets like this there is no reasoning with her. I asked my friend what happened and apparently she told them they could watch one episode of Sponge Bob and then start their day. Well, Mariah got upset because I usually let them watch for a half hour. So she started acting up. My friend decided she'd better give her the pill and let it start working. It blew up from there. DD was hysterical and refused to take her pill for almost a half hour. I explained to my friend that dd wouldn't take it if anyone is looking at her and to please give her some space. Eventually she took it, but knowing how she acted for my friend really made me feel embaressed. She is usually very well behaved. However there are times that she has these meltdowns. Like the time she rolled down a hill that had been sprayed with pesticides and she touched her face. I told her to quit sticking her hands in her face because of the chemicals and she went bananas! For at least ten minutes she cried hysterically because of the stuff on her!

I guess this is just a vent, but am I doing wrong in trying to compensate for her needs? You know, respect her personal space, try to avoid changes because of meltdowns, etc. We avoid gum and cough drops because of her SPD (it's primarily hyper auditory). I homeschool and am scared that she is going to be ill prepared to deal with the real world. Honestly the older she gets the more difficult it gets. She is mute in public and everyone who knows her just says "well, that's just Mariah" and she gets away with not talking. I am at the end of my rope.

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Old 01-13-2012, 04:01 AM   #2
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Re: compensating for special needs

I think you have to find the balance for your child. Perhaps her doctor can help you best gave what is the most realistic.

Basically, it sounds like keeping things to her normal makes her the most comfortable, so that is what makes the most sense for living life in your household. Most likely, eventually, you will b able to deviate from this a bit. Maybe pick one thing for her to be more flexible about, and work on it. For example, use one of two types of juice for her pill taking in the morning, or vary the amount. Vary the tv show in the morning, etc.

Does she need to feel like she has control, or is she just happier with her normal? I ask, because in some ways the control can be easier to work on. You can offer options tht are both acceptable to you, and let her pick, etc.

Good luck mama!
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Old 01-13-2012, 05:19 AM   #3
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Re: compensating for special needs

I can't remember, how old is Mariah now? It's a tough--when they're really young you need to compensate for your LO's special needs; they're too young to have the skills & they can't explain their needs to people. Then there's a sweet spot to start working w/ them on their own compensatory skills...the trick is seeing that in your own kids, b/c I really think it's different for every kid. And if you miss the sweet spot, it can be really difficult to get them back on track toward whatever that child's optimal level of independence is.

I've worked w/ individuals w/ Mental Illness & Emotional Disturbances for years. A good chunk of that time has been spent working w/ kids, adolescents, and young adults. I had a couple of 8 y.o.s who had Bipolar d/o in addition to ADHD, & PDD, which included a lot of sensory stuff. I certainly didn't expect those kids to have mastered their own compensatory skills, but I also didn't think it was acceptable that, since the kids were "graduating" from more intensive programs, that I "had to" adhere as closely as possible to the schedule & activities the previous worker had done...as in, I was expected to pick one up from school on Tuesdays & keep him for 3.5 hours, doing arts & crafts activities, b/c that's what the previous worker had done...the other I had to pick up from school on Tuesdays & keep him for 3.5 hours, going to the park & doing other outside, active stuff. Now, I don't mind doing those things on occasion, but mine was a professional program & both kids were having behavioral problems at home...the "routine" was b/c the parents didn't want to throw the kids off & have outbursts (making it more difficult for the parents) & they essentially got used to the 3.5 hrs of respite. IMO, it would have been more productive to spend some time IN the home, working with the kids while they did activities w/ parents &/or siblings to support appropriate interactions, KWIM. The rigid, respite-type service doesn't introduce long-term improvements, even though it may be more comfortable for the kid & the parent...helping the kid to manage their impulses in interactions w/ parents, siblings, & others, & learning to be flexible are all developments that will allow the kid to be higher functioning in the long-term.

So no, I don't think you're wrong to compensate for Mariah's needs...but I do think you need to be developing a plan for how to help Mariah develop her own compensatory skills in the future...like, being able to low-stim herself before she has a meltdown or being able to explain how she needs things done rather than having a meltdown b/c someone else doesn't know, KWIM? It won't be immediate and it won't be perfect, but it sounds like she's smart enough to lead a pretty "normal" life if she can manage some of the sensory & behavioral stuff going on with her. There are probably some programs--case management or mentoring programs--that can support that work, giving her 1:1 or small group time to practice the skills she's working on, too.
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Old 01-13-2012, 08:13 AM   #4
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Re: compensating for special needs

Quote:
Originally Posted by carriek38 View Post
I can't remember, how old is Mariah now? It's a tough--when they're really young you need to compensate for your LO's special needs; they're too young to have the skills & they can't explain their needs to people. Then there's a sweet spot to start working w/ them on their own compensatory skills...the trick is seeing that in your own kids, b/c I really think it's different for every kid. And if you miss the sweet spot, it can be really difficult to get them back on track toward whatever that child's optimal level of independence is.

I've worked w/ individuals w/ Mental Illness & Emotional Disturbances for years. A good chunk of that time has been spent working w/ kids, adolescents, and young adults. I had a couple of 8 y.o.s who had Bipolar d/o in addition to ADHD, & PDD, which included a lot of sensory stuff. I certainly didn't expect those kids to have mastered their own compensatory skills, but I also didn't think it was acceptable that, since the kids were "graduating" from more intensive programs, that I "had to" adhere as closely as possible to the schedule & activities the previous worker had done...as in, I was expected to pick one up from school on Tuesdays & keep him for 3.5 hours, doing arts & crafts activities, b/c that's what the previous worker had done...the other I had to pick up from school on Tuesdays & keep him for 3.5 hours, going to the park & doing other outside, active stuff. Now, I don't mind doing those things on occasion, but mine was a professional program & both kids were having behavioral problems at home...the "routine" was b/c the parents didn't want to throw the kids off & have outbursts (making it more difficult for the parents) & they essentially got used to the 3.5 hrs of respite. IMO, it would have been more productive to spend some time IN the home, working with the kids while they did activities w/ parents &/or siblings to support appropriate interactions, KWIM. The rigid, respite-type service doesn't introduce long-term improvements, even though it may be more comfortable for the kid & the parent...helping the kid to manage their impulses in interactions w/ parents, siblings, & others, & learning to be flexible are all developments that will allow the kid to be higher functioning in the long-term.

So no, I don't think you're wrong to compensate for Mariah's needs...but I do think you need to be developing a plan for how to help Mariah develop her own compensatory skills in the future...like, being able to low-stim herself before she has a meltdown or being able to explain how she needs things done rather than having a meltdown b/c someone else doesn't know, KWIM? It won't be immediate and it won't be perfect, but it sounds like she's smart enough to lead a pretty "normal" life if she can manage some of the sensory & behavioral stuff going on with her. There are probably some programs--case management or mentoring programs--that can support that work, giving her 1:1 or small group time to practice the skills she's working on, too.
Carrie, Mariah is 8 now and yeah I do feel like I don't deviate from the norm because of these meltdowns. They aren't so bad once she's medicated and the meds kick in, but now she's starting to blame her behavior on not having her pill. Like in the mornings if she acts up she says it's because she didn't have her pill. I tell her that I still expect her to be able to behave better than she is. But then, how do I know if it's her own fault or not, kwim? I don't berate Savannah when she has an asthma attack; she can't help it! So where do I draw the line with Mariah? Also, I should mention that the psych we were seeing, who I really do like, does not believe in SPD. He says she has "control" over situations by having meltdowns in response to certain sounds. Like, if I chew gum and she can't handle it, I throw it away. He thinks she's controlling me. Her OT says it's a real disorder and they are working on getting on the DSM-IV charts. I have an associate's in Psychology and I see both sides, kwim? I don't know what to think anymore. All I know is I'm tired and worn out, especially since her stepdad is gone and her dad is no help.
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Old 01-13-2012, 09:02 AM   #5
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Re: compensating for special needs

It's a balance. You don't want to set them up for failure, because that won't help anyone. Sounds like you know exactly what to do to help her be successful, but it's pretty specific and a lot of work. Find ways to slowly push the envelope and expand her comfort zone, but don't overwhelm her by taking away all her security at once. Stopping everything you are doing and expecting her to just deal with it won't really help. If she was capable of dealing on her own, she wound't have meltdowns, KWIM? Good luck mama!
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