Wednesday, June 1, 2011

I'm not a very good therapist

Is Pumpkin so incredibly delayed because she is mentally retarded and she really is severe (vs. moderate or mild)? Is Pumpkin so incredibly delayed because her seizure medicine puts her in a fog and she just can't overcome the side effects? Pumpkin so incredibly delayed because she has suffered years and years of neglect?

These questions can't be answered. (at least not easily they can't)

I want to help Pumpkin overcome these delays. She has never been in school. She has never been in therapies. But the progress is sooooooo slow.

I'm a take charge kind of gal. If there's a problem, I want to fix it. And I want to fix it RIGHT NOW. I really felt like things were going great when Pumpkin got here. In four months I made up for five years of medical neglect. Pumpkin got back on her seizure meds. Her teeth got fixed. I got her caught up with all her shots. I got her enrolled in school. I got her in private PT, OT and speech therapies. And I got her an IEP at school which included school PT, OT and speech as well. I was rockin' it.

But now, I am stuck. And yes, I'm the one with the problem.

Pumpkin's occupational therapist told me that they are working on Pumpkin's dressing skills. They have her putting on and off her socks and shoes. They also want to work on putting a shirt on and off.

Good I say. I'll work on this at home too.

But I stink at it!

Tonight I told Pumpkin to take off her shoes. Well...she knows where her shoes are and she pulled at the laces at little. But she couldn't untie them. And for reasons I can't seem to figure out or control, this ticked me off. It sounds so damn petty. I know it does. But if my struggles can help anyone else to not feel alone in situations like this, I guess I'll spill my guts to the internet.

Anyway...I switched and then told Pumpkin to take off her shirt. But, as I've figured out recently, once Pumpkin gets stumped on a request, there's no point in continuing on. I should just stop giving her commands. She can't do it. She just can't. I need to learn how to shut up. (not a skill I'm very good at)

Here's my dilemma. I want Pumpkin to learn some of these self-care skills. And I know that she's not going to "really" learn them if she only does them in therapy. The process has to come full circle and she has to work on the skills at home too.

However, I need to avoid doing things that trigger me and make me angry. It's not Pumpkin's fault that she sometimes forgets the difference between "shirt" and "shoes". Or "lay down" and "sit up". That she doesn't know what "roll over" means so I can clean her bottom in the bathtub. Honestly, I know it isn't her fault.

But I feel so pointless going through the motions over and over and over and over. When I give her a command she'll understand it about 5% of the time. I hang my hat on the 5% and then get ticked off the other 95% when she has no idea what to do.

Do I stop giving the commands and just do everything for her?

That doesn't seem right. She deserves a chance to learn. Since coming to my home we have successfully taught her to say "more" when she's at the dinner table and wants more to eat. We have also taught her "all done" for when she is finished eating. I have taught her how to climb up the stairs and how to crawl around the corner before standing up (so she doesn't tumble back down the stairs in her attempt to stand up again). She has learned a few signs.

But honestly, almost everything in Pumpkin's day to day routine requires (at a minimum) physical prompting. There are a few commands that she gets right every time. And by few, I do mean only around three.

Reunification is where this case is headed. I'm quite confident that bio mom is not going to all of the sudden become Mom of the Year and start being active in Pumpkin's therapies. I shouldn't speculate, but I doubt that Mom will do much other than what CPS requires of her. These things weren't a priority for her the first five years of Pumpkin's life. Why will they become important after Pumpkin goes home?

I want to help Pumpkin be all that she can be but I'm just not sure I can keep doing "therapy" at home too. I stink at it. I just don't have the patience. It's almost easier for me to think of Pumpkin as an infant and ALWAYS treat her like one instead of pushing her and trying to get her to do stuff on her own and then still having to do it for her anyway. I feel bad. But I feel even worse when I get frustrated with Pumpkin and her inability to do things. My less than stellar parenting moments are becoming more frequent and I've got to make a change somewhere.


MamaFoster said...

i have not had to deal with this in the capacity you have, but slightly with my other children. it is such a huge commitment to remain calm, keep things fun and "never" get upset.

i fail at it HORRIBLY all the time.

if it makes you feel any better...i am sure you do better than i would :)

C Dawn's bucket said...

I know that Pumpkin seems be have additional delays than my little guy so I may not have a clue what I'm talking about. Although there was a period of almost 2 years where we were seriously looking at using an electronic speech device because he simple would not communicate in any way other than SCREAMING. And I was one frustrated mamma let me tell you.

Something that worked for me was to set my expectations of "success" much lower than I knew he was capable of. I was involved in all of his therapy appointments so I knew what he could potentially do if pushed by a therapist. But getting those same results at home were impossible to attain and have me stay calm. So I broke down the task into smaller increments and would actually write the goal for the week on a card and post it on the fridge. So for example a broad goal was when he was thirsty he would ask for a drink. I broke this down into many smaller parts. I think the first was that he would go into the kitchen. When he did that I celebrated (gave myself/him a tally mark on the card) and hand over hand motored him through each of the subsequent steps. Then the following week I would add onto the previous goal (provided there had been some success...there were times that I had to figure out how to break it down even further than that).

For me this worked because I had a tangible reminder for the small baby-step that we were actually working on as well as an ability to see that he was able to do the smaller steps. And it sorta/kinda kept me from focusing on how maddening it was that he wouldn't do things at home that he was capable of at therapy.

Not sure this is helpful to you but I thought I would share it in the event that my experiences might also be of help.

CherubMamma said...

Those are some great ideas Dawn. Thank you.

I'm grateful that Pumpkin isn't a screamer. In fact, for a special needs child, she is off the charts mellow!! I've had several therapists recommend using a speech board with Pumpkin. It's complicated, but I'm not ready to attack trying to use one of those yet. I want to see what happens after she's been in therapy for a full 6 months before I make any changes. (I'm not convinced Pumpkin has the cognitive skills to even use a speech board.)

I'm not able to be fully "hands on" with Pumpkin's therapies. Part of this is because of the sheer amount of time it would take. Part of it is because the area of the country where I live just does things differently. I don't get a lot of feedback from the therapists at all. I call to speak with them every now and then. But, they don't seem to value my involvement. It's sad.

What I have learned though is that they say Pumpkin is doing "great". When pushed for a definition of what that means though, I'm told that Pumpkin complies with the therapy requests (she doesn't throw fits). She requires hand over hand for almost everything in OT. Gross motor skills are coming along in PT (I'm seeing better balance at home but she still can't walk "community distances"). In speech therapy, she's learning to make eye contact and learning to take turns. It's slow progress I say. Very slow!

I do appreciate you sharing your experiences. Starting today I'm going to be caring for Pumpkin all day every day (school is out). I'm going to have to do some things to remind myself to stay calm while working on new tasks with Pumpkin. I do want her to progress. Breaking down goals that I think are important is a great idea (even if they aren't the exact things she's working on in therapy).

jendoop said...

I think C. Dawn's idea is great.

I also wonder if you need to fess up to the therapists that you are finding this difficult. They may be able to suggest other ways to work on her skills.

Also, I'd give yourself a time limit. If you've been working with Pumpkin on a skill for 15 min and it's not done, take a break, or let it go all together. Sometimes I focus on a task so much that I just want to complete it and in the meantime I'm torturing my child with my determination and frustration. It can also motivate you because you can think, "I only have to work with Pumpkin for 15 minutes." That way there is no pressure on you to 'make' her perform. It's a time goal only. Results are all up to Pumpkin.

Brownie said...

Hi - I popped over from Freerange kids. I am impressed with your dedication. I know I wouldn't be able to do it without determination and a lot of prayer.

CherubMamma said...

@Jendoop - the time limit thing is a good idea for the bigger tasks. However, I've broken it down even smaller than 15 min for right now. Honestly, if she doesn't understand what I'm asking her to do...waiting and repeating doesn't work. It's almost like she either understands or she doesn't. No middle ground.

So, I do my best to only ask her to do things when I'm not in a hurry. (One of my biggest downfalls seems to be asking her to do something like take off her shirt when I'm rushing to get all three cherubs in bed. When she's slow and gets confused I get frustrated...when I shouldn't have made the request at all.) If she seems to understand what needs to be done, I will assist as needed. If she seems clueless I need to just do the task for her.

I've been thinking about this a lot right now and I've decided I'm going to focus on just a couple things...
1. simple dressing skills - shirt only
2. tell me when she's pooped her diaper

I'm going to do a better job of simply giving a running commentary as we go through life. I have to continually remind myself that mentally Pumpkin is an infant. Saying "we're going to sit down now" as I sit her down is what I need to do versus telling her to sit down and having her get confused. It's crazy difficult when she's nearly six years old. But I have to meet her where she's at.

@Brownie -- thanks for the vote of confidence!! I can promise you everything I do is wrapped in a tremendous amount of prayer. This foster care stuff is a trip! I do believe that God has a crazy sense of humor. Originally we had said we weren't going to foster medically fragile children. And we are. Thanks for stopping by!