Tuesday, March 2, 2010

March 2

I really was in a dark funk for a little bit. Sort of like having 6 weeks straight of PMS. After I flipped out on a stranger in a parking lot, I realized I really need to give up the cavey bit and crawl back into the light. The fact that we finally seem to be seeing the sun a bit is probably helping me do that quite literally.

I still am not what I'd call cheery, though. It's not any one thing, but a few larger ones mixed with smaller things. (Like still battling bills, not getting enough sleep.. well.. ever, and being on a diet. I mean, no one is ever happy to be on a diet, right?)

My morale at work is at an all time low. And that's saying something since I've never really liked my job. The pay is decent and the benefits are excellent. Considering the state of the economy, I know how incredibly lucky I am to have a job at all, never mind one that provides well, so I need to STFU. But honestly, my feeling is complete and utter apathy. Not even anger or misery or sadness (all of which I've had at work over the last 9 years there) just apathy. I think that's worse than anger even. I feel like a zombie when I'm there. It's just sucked the life from me.

Outside of work, I've watched a few friends go through some unpleasant things lately, and they trouble me as well. Friends going through things that hit close to home, so not only do I feel bad for them because they are my friends and I love them, but also because it dredges up some memories that I guess I hadn't quite put to bed yet.

And really, the biggest thing has been Robbie's therapy. I know I posted about this recently, but nothing has really changed.

I think part of it is that Robbie has been doing *SO* well lately. Is he a typical 21 month old? Or even 18 month old? No, he's not. But he's a helluva lot closer than he's been pretty much since he was born. Every day, he's showing me something new. Yesterday I laughed so hard to myself because he came walking through the living room almost looking like he was skipping, then I swear, he assumed the Superman position like he was going to take flight and just... leaped. Of course, he fell flat on his face and screamed his head off. But up until the face plant, it was really entertaining to watch. Where in the world did he get the idea he could fly? And who is gravity to tell him otherwise!?

His receptive language is exploding. Something as simple as telling him to stop playing in the trash and he actually STOPS PLAYING IN THE TRASH sometimes leaves me gape-mouthed. Holy crap, he understood me and actually listened. He's finally really responding to his name (which makes picture taking a lot easier, I must say.) He's been "singing" a lot. Mostly he sings the Witch Doctor song. "ooh eee ahh ahh eee eeh ooh ohh" but he'll make signs for other songs as well.

Feeding is really improving as well. He loves crackers of any sort. The other night he actually picked up a fried chicken leg and gnawed on it a while. He probably only consumed 1/8 oz of anything, but he looked like he liked it anyway. Tonight he finally put some cheese in his mouth. And after some cajoling, got him to taste a pickle as well. (In an unpleasant moment, I was sort of force fed a pickle covered in chocolate graham cracker crumbs, but it worked to get him to try a bite himself, and hey.. what does it mean to be a mother if not to sacrifice your own good sense and tastebuds once in a while?)

He still won't drink diddly, but whatever. Progress is progress.

He's also been a complete tyrant. Now that he knows what "no" means, boy he REALLY doesn't want to hear it. And take something he's playing with away from him? Holy mother. He gets hysterical. I get pushed away probably an average of 10 times a day. He definitely lets his feelings be known.

All of which is incredibly frustrating as a parent, but in a TOTALLY NORMAL WAY. I mean, it would figure the only developmental milestone he'd meet in a timely fashion would be the terrible twos. But I can step back from the ledge of insanity and appreciate it for what it is- Typical. We don't get a lot of typical around here.

Now, I know you're thinking "Trish.. weren't you whining? This all sounds good." and that's true, it is.

But I keep getting this negative reports from his therapists and man, they are just dragging me down. It's like having been a failing student for my whole life, getting to college and suddenly having a solid B average, only to have your dad say "why aren't they As?" It's like nothing is ever enough.

Right now we're in the process of selecting a speech-language pathologist (SLP) to come do an evaluation for Robbie. I'm not even that worried about his language. Yes, he is on the lower end of expressive language, but because I've seen such a profound improvement in his receptive language recently, I think it will come.

But Robbie's developmental therapist wants him evaluated anyway. She has said she's not sure he's going to qualify, but she's worried because he's so close to 2, and at that point they'll stop adjusting his age. So even if he's caught up to his adjusted age, once May 31 hits, he's going to be 3 months behind again. I find the whole "magic age of 2" thing extremely annoying anyway, but that's a rant for another day.

On the note of speech, though, from my perspective, he's now 21 months old, 18 adjusted. And she's already talking about where he should be for a 2 year old. In my opinion, there is a big difference between 18 months and 2 years, particularly in the realm of language.

And I'm not even saying he couldn't benefit from a SLP. Honestly, a SLP could probably help us with feeding issues at least as much as language issues, so she'd probably be good to have in our arsenal.

But at this point, Robbie gets therapy at least twice a week, sometimes three times. And every one of those appointments bring more judgement. I KNOW it's their job to judge. How he's doing, what has improved since last week, what hasn't. But I'm getting a lot of commentary about him being uncooperative. The insinuation seems to be that he's regressing. That just isn't the case. He's uncooperative because he's in a stage of exploring his independence and right now, he doesn't feel like biting that tube in his mouth 10 times. (Part of a bite program designed to improve jaw strength involves biting some tubing.)

I'm not a parent who sticks her head in the sand. I'm a worrier by nature. If you insinuate something is wrong, I will Google it until 2am for a week straight, wring my hands, and chug some mylanta for my anxiety induced stomach ache. But he's honestly doing great. And it's frustrating when I feel like they're not seeing the bigger picture.

Some of it is attributable to the fact that we're not communicating face-to-face. Most of Robbie's therapy is done at daycare. I've made a number of efforts to rearrange my work schedule (usually losing pay) to be there for appointments, and then a therapist won't show up. There's almost always a good reason, or some miscommunication that leads to it, but it just keeps happening and I'm frustrated.

Robbie comes home with reports stating that he's regressed to only eating stage 1 baby food. What? He hasn't eaten stage 1 baby food in at least six months. Where did that even come from? Well, daycare told the OTa something and somewhere along the line, someone was just plain wrong. That's not something that would happen if I could chat with them weekly.

I've asked his PT to send me an email once in a while vs just leaving the reports. Rather than relying on something written from a more medical point of view, something a little more personal might come across better. But instead, I'll get a text message saying "didn't have a chance to email. Robbie's great. Can I see him today at 10." (and this will be at 9am.) Um. Sure, okay. (Communicating via text message really frustrates me as well. Not just with therapists, but with people as a whole.)

It's just.. frustrating. When you add the fact that I really have my doubts about how much any of this is actually helping, it just wears on me.

I'm celebrating the strides Robbie is making but every other day or so, I feel like I'm getting a bucket of cold water dumped on me.

And now we get to add a FOURTH therapist to the mix. Whoopie!

I keep trying to tell myself it doesn't matter (I even stopped reading the whole reports- just focusing on the "what to work on" portion) but it seems like it sneaks up and smacks the life out of me anyway.

As much as I do take some flak about focusing on the negative, by and large, I'm a pretty hopeful person. I really enjoy being a mother (minus the tantrums and sleep deprivation) and I really just think my kid is damned amazing. Getting a thrice weekly dose of negativity just wears on me.

I really don't know what to do about it. I spend 8 hours a day at work in a less-than-stellar environment. I look so forward to coming home to my family, but then these outside sources take some of the joy from that, too.

What I really want to do on a purely selfish note is tell all the therapists to suck it, save my copay and time and just let Robbie be a kid. But I would never do anything to risk limiting Robbie's potential. As much as I feel skeptical about the benefits of the therapy he is now receiving, I wouldn't risk it based on that.

So for the time being, I'm just grinning and bearing it. (Or more accurately grimacing and bearing it. I'm not a good faker.) And mostly just keeping to myself, because I don't really want to spread my negativity around any more than what is necessary (sometimes a good vent session is needed to release some steam.)

If you would say a prayer for us, I would appreciate it. Prayers for peace & patience for me and speech & development for Robbie. And for all of my friends going through rough times right now. I know they'd appreciate it, too.

--Trish

18 comments:

The Quarke Family said...

I think you're right to vent every now and again, be it here on your blog or maybe to a friend in real life. I really think it makes a huge difference to come out of yourself every now and again.

As for the development ... I tend to think that the experts and specialists tend to be far too prescriptive these days, about what kids should be doing when. On the other hand, you're absolutely right about not wanting to let anything stand in the way of his development, and not wanting to leave any option unexplored in case it might benefit him.

I don't know enough about preemies and their development to have an intelligent opinion on whether or not even one or two of the experts could be ... dropped. Gently. I wish for you that they could, but I guess that's not really an option?

I guess I'm saying ... it sounds like you're doing a great job. And for what it's worth I'm astonished at how far he's come anyway, never mind when I remind myself that his age has to be adjusted down. I find these little humans astonishing, how much they learn and accomplish in such a short space of time. We should be able to enjoy watching that.

I hope the sun shines for you guys more often soon!

P.S. Sorry about the epic comment.

NoVaIrish said...

Trish, you are an amazing Mom and I think Robbie is an amazing little boy.

Is there anyway you could look for new therapists? My nephew's therapists were like family (they still come to his birthday parties three years after they stopped working with him!) and they worked incredibly well with not just him but my sister and BIL as well. If you are asking for an email and all you are getting is a text message, there is a disconnect somewhere. I'm not saying that there people are fantastic therapists, but they might not be the right fit for you and Robbie.

Hugs.

The Lesters said...

I'll be praying for you guys. I know exactly how you feel. One of my boys is in the process of being tested for autism. And I feel like instead of celebrating his successes, the therapists only want to see his delays. But we have to hold on to the successes no matter how small they are. Because if you don't then pretty soon all you are seeing is failure. And I think you have a great outlook on the whole thing. I mean you have to listen to the therapists but just move that to the back of your mind and keep reminding yourself of how far he has come (and it is far!). One thing that helps me is I go back in my blog and see what my son was doing a year ago. And always he is ahead of where he was back then and that makes me smile.

Kristin said...

I'll be thinking of you Trish. FWIW, I think you are an amazing mom. I know it seems like more work now, but I also wonder about finding new therapists? We love, love, love our developmental therapist and have only just started with our speech therapist, but I think making that connection and workign with people who respect your time is critical. Any chance your husband could attend some of the therapy sessions?

Laura said...

((HUGS)) I've got your back girl! I swear, for a moment I thought you were writing about me... He he he. Hang in there, C&E are talking up a storm and you know what that means? Robbie is just around the corner from them just waiting to figure out how to get in all the same trouble. And boy to I mean TROUBLE! Watch out girl!

ggop said...

Trish,
Been a lurker but this post really spoke to me. My kid gets PT, OT and I'm pretty sure they will prescribe Speech therapy soon.

I totally get what you are saying. I've watched some of the videos you posted and boy it sure gives me lot of hope looking at Robbie's progress.

All the best and trust your instincts. I'm very confident things will work out in the end but the journey is very frustrating!

AngelsAmid said...

what irritates me is the "hes been uncooperative" when that's normal behavior for his age. Uggh! How frustrating. You're a great Mom and you're doing a great job. Never be afraid to vent how you're feeling. *huge hugs*

Tasha said...

Prayers for you. Not even five minutes ago, I was right there with you. We had received Bree's OT evalutaion in the mail and it wasn't great. BUT, I think she's doing great...and is progressing nicely. She will get there eventually, just in her own time...as will Robbie. I wish we could let them learn from each other...they would love to play together.

I think he's fine personally. Not that I see him in person or anything, but his speech is better than Bree's. Also, he's a boy, and they tend to be a little quieter in the speech department. Remember, you can say no to therapies. Or double up on them in one day. I like to do one in the morning, then one in the afternoon so we only have therapies on three days instead of four. It seems silly, but it works for us. Makes us feel less constrained by therapies.

((HUG))

Amy said...

Sigh. :( I will definitely pray for all of that.

Becks said...

I really, really hope you don't take this as criticism or judgement (it's not! It's really not! I promise!) but have you considered working with a family therapist yourself? It seems to me that you and your family have been though quite a lot of life and death trauma over the past 21 months, not even counting the trauma of IF and all that came before Robbie's birth. And to add (I am sure!) financial stress, work stress, working mom stress? You are a freaking hero! And you need a cheerleader, adviser, councilor, etc. to help you deal with and overcome all the crap that life has thrown at you over the last couple of years.

I don't think working with a family therapist has to mean there is something "wrong" or "bad" with you. I do think that the wounds that are inflicted on our hearts, from IF, prematurity, GERD, etc., can weigh us down and rob us of our joy in life and in our families, husbands, and children. We would see a doctor is our arm was broken, and we should see a therapist if our hearts have been broken. Just speaking from my own personal experience, therapy has been SO SO helpful in healing the trauma, helping us cope with it, and take more joy in our lives. I feel a little silly saying this, but I want you to be happy, not sad. So many sad things have happened to you, but so many good things have happened too. It would be so sad if you couldn't feel happy about the good things because you are too sad about the bad things.

Azaera said...

It's that awful feeling of being stuck between a rock and a brick wall. If you do let them go life may be a whole lot easier, but Robbie's development may lag, but if you keep them you're going to be stressed out and feel like people are doubting your abilities as a parent. It's such a frustrating situation. I wish I had some advice. Personally when Skyler had two OTs we made the decision to cut one of them out, and kept the one we really liked. The one we cut didn't have the best attitude and we realized we just didn't need her as part of his team.

Mary said...

Hey Trish, I am here and looking forward to following your blog and also reading your past entries so I can catch up on his progress.
I knew too well the stress you are feeling; balancing work, getting worn out and worn down from the effects of the recession, the therapist's constant evaluations and sometimes, constant criticisms, the sleep deprivation, the worry, etc...BUT, you know what, I always felt better after writing! Blogs are great ways to vent and connect with others and I'm glad we found each other. If it is any consolation, we are out of the feeding therapy phase and he only sees a speech therapist twice a week now, and, grnated, each child's case is individual, but, it will get better!! It sounds like Robbie is making progress and therapy, patience and faith will get ALL of you through this. Keep writing it all down, the milestones, set backs, all of it and, most importantly, take what others say in stride and listen to your gut. You know Robbie better than anybody.

Me said...

Hey luv. Wish I knew what to say. I don't. But I just wanted to comment to let you know that I'm in your corner. ((HUGS))

Amy said...

You have every right to vent and be frustrated....I would be the same way.
And I agree that there is a huge difference in speech between 18 months and 2 years. HUGE!
Hang in there and keep your head up!

FattyPants said...

What a platefull. Prayers for you.

Maureen said...

As a mom with a son with minor delays (of unknown origin, many specialist later, with another round of them about to start) and a person who was an early intervention therapist prior to having kids, often I find that I have a different view when I read the reports and talk to his therapist. Some of it is just plain hard to hear, some of it I take personally. But in general I take less of it personally. If you have ever read any of the "Love and Logic" parenting books (which I recommend), I view many of the statements/conversations as "neutral" statements instead of positives or negatives. When they list things that he is doing, I view it as a way to make sure we are on the same page of what he is doing, and a way to mark progress. I/we can then look back and say that he was doing whatever at whatever date. The things to work on/what he should be doing next, I try to view more as what the next typical step developmentally is, not that he is necessarily behind (even if I know he is) but just what the next step it is. Consciously trying to frame the thoughts has helped me not get frustrated/down.

I hope I have said this in a way that it at least somewhat conveys what I mean. With all of this said, I have dropped one therapist, and thinking of dropping another because they just did not work for us.

Trish said...

Maureen- thanks, that was helpful.
The reports I typically have more issues with are the OT reports. They are broken down into:
What I observed today:
How Robbie responded today:
What to work on:

Observations and what to work on, I'm usually fine with.
But some of the stuff about how he responded get to me. When she notes that he's gone backward in some way, it annoys me.
It's one thing to say "Wasn't interested in putting a spoon his mouth today" it's another to note "increased oral defensiveness." Maybe it's arguing semantics, but the latter implies regression, wheras the former allows for moods & phases & individualism.
Maybe I really am just too sensitive. I really am just SO sick of feeling like my kid and my parenting are being critiqued three times a week.

Bethie said...

Hey Trish. I read your blog every now and again and think about you guys a lot! All I can say is you are a wonderful mom with an even better son, who you have every right to brag about his ups and vent about his downs. Just keep doing what you are doing!!