I know most of the time things just seem to be going good and Jake seems to be making progress and all is well. But not every day is like that. I know I'm not the only mom out there who feels that way, and especially not the only hydro-mom either. Every mom has to deal with hard days no matter who you are. It's the lack of sleep/fighting with your kids/trying to keep everything in some kind of order syndrome, and it's normal, but today was just awful.
With therapy there are so many ups and downs. It seems like it's 2 steps forward, 10 steps back. Therapy is pretty much my life. I try to do it every single day and most days out of the week at least one person is coming over to do therapy with Jake. But it's becoming harder and harder to do therapy by myself! Jake is getting so big and so stubborn. Usually his Physical Therapist (PT) or Occupational Therapist (OT) are putting him into position and doing the exercise and I'm in the front of him trying to entertain him with a toy so that he'll cooperate and be interested. When I'm by myself, I don't have anyone on the other end to keep him occupied, and I'm usually by myself because Kenny's so focused on getting through school that he leaves early in the morning and comes back later at night after Jake's gone to bed so he can't really help me.
Today Jake had OT and it seemed like she had mostly negative things to say. She wasn't saying anything in a mean way, just a way that made it sound like Jake has SO FAR to go and it made me feel so discouraged because I know she's right. Here's the list...
1. Jake is not supposed to be putting so many things in his mouth all the time at this age anymore so she said he's not able to focus on things around him when he puts things in his mouth.
2. His arms and hands are very sensitive so he won't let you direct them to help him learn to do certain activities or put pressure on them.
3. His legs and feet are also sensitive so he's not putting weight through them like he should.
4. He's not interested in clapping, waving, or anything of the sort.
5. He hates learning to crawl and he doesn't want to lift up his head for it.
6. He's not interested in many toys kids his age should be interested in, or activities that they usually do. He doesn't care about shape sorters, dry beans in a bowl, etc.
7. His left hand likes to stay closed more than the right which is hindering his hand skills with toys and food.
8. He doesn't know how/ doesn't get how to pull things very well... handkerchiefs out of a can, etc. do not interest him at all.
Those are just the ones I can think of off the top of my head. It just feels like the list gets longer and longer every day. That's seriously about half of everything I have to work on with him every day! And does it always get done? I'll admit, no. So when his OT comes and she's telling me all this stuff that he's not doing or is doing that concerns her, it just makes me feel horrible because I know it's my fault for not being as on top of things as I should. Sometimes I get complacent and I feel like I can just let him lay on the ground for a minute and play, but really I shouldn't. Every second of the day should be structured. I'm considering making myself a daily schedule so that I remember to do everything.
(This is how we try to get him to learn to use his legs to crawl)
It's just so exhausting! Every day is fighting, fighting, fighting until one or both of us is resolved to tears. Today it was both of us. I just had the realization that no matter how much I do for him it will never be enough. There will always be something more I could have done or something more I can do and I just feel extremely alone in it. It's so exhausting being in charge of your baby's development anyway, let alone if they have special needs and I know I'm the only one who is with him enough to know how to help him. There are those of you out there who I think of in times like these because I know you know how I feel: Cathy Layman, Julia Baker, Shannon Daniels, and Stephanie Jones to name a few. Being your child's advocate, voice, and main therapist can get discouraging. I start feeling so guilty because I know I must not be doing enough if he is still so sensitive to weight-bearing, and all the other things.I know what the human brain can do in children, how it can repair itself, and so it's up to me to help him make those connections and catch up! Jake IS pretty smart. He can catch onto things, but the fact that it's taking him a long time just makes me feel so down sometimes. Almost every day I think of my friends and family who can just set their child down and let them play without having to help them do simple things, who can just watch their child learn to crawl and walk without having to move their arms and legs for them or do work on a yoga ball every day to hopefully get them to move. With the movement comes cognitive development and so the two go hand in hand. It's hard to see my baby behind and not understanding things he should be understanding and just hoping that if I work with him hours every day he'll get it.
So yeah, usually when I write about therapy it will be about the good and exciting things that are happening. But today was just a day when it felt like we went a football field in the wrong direction and I'm so exhausted! Let's just hope next week is better :)
6 comments:
Well you are a good mommy- and wow how selfless you are needing to be. I want to be like you, Mandy. Keep up the good work, and like you said- it was just one of those days. Crying is good too. I have days where both kiddos are crying so I do too. Phew. This mommy stuff is hard but rewarding!
You're not the only one who feels like you're a failure. Trust me! Just hang in there! A schedule is a really good idea. So you can have the list and what you want to accomplish with him for that day right there where you can see it and do it. If I made a list of all the things Zeke couldn't do that he should be I'm sure it'd be just as long. The only difference is I don't have someone coming in and telling me everything he can't do. Just remember to Look up and cheer up. When we look up towards heaven we remember our Heavenly Father and how much he loves us and how he has blessed us and it helps us to cheer up. :) LOVE YOU BUDDY BUD!
OMG thanks Michelle you just made me cry again lol. Yeah, it's true I feel like someone is just always telling me what he can't do. But God has really blessed us :) Thanks buddy bud!
This is good for you to vent. That's part of why we're here, to support each other. You're doing amazing! I keep telling my friends about how great and strong you are. I love you Mandifull!
Mandi. Mandi.Mandi.Mandi.
My response was TOO long! Haha! They are making me break it up.
Okay. Where to start? Oh! A big hug.
That was nice. Now on to business.
Yes. You are so right. Therapy is 2 steps forward and 10 steps backwards. I would like to say it gets better but it usually doesn't.
I wish I lived by you, I would come over every day and play with Jake while you worked him or vice versa. Maybe you can get some sisters in your ward to help? My bff with a deaf/blind/down syndrome child was doing some intensive therapy (total brain fart right now, can't think of the guy's name) and she had a schedule of people over - six a day. People bent over backwards to help her. Not that you want just anyone, but is there anyone nearby who can help you?
Your OT has way way way to much on Jake's plate. In my opinion. That list may be correct and it may not even be all of it, but you need a limited number of goals that you can work on. Eight?! EIGHT?! That is WAY too many! Let's start with three. And some of them overlap. Especially since you probably have OT and PT.
While I'm thinking of it - here is the deal - trying to think of the right way to say this - the level of Jake's brain recovery does not depend on you. By that, I mean, it's out of your control. You do what you can, but really, it's not something you can make happen. You can't make the connections in the brain ... connect. They happen. Or they don't.
Some more bad news - neurotypical kid or not - you will never feel like you do enough for your kids. There is always something else you can/should/want to do and there just is not enough hours in the day. I will admit it is worse with the special needs kids, but it's just a feeling that accompanies being a diligent mom.
Sweetie, do you think it's possible you are doing too much therapy? All work and no play makes for a cranky mommy and baby. I am of the humble opinion that you go ahead and make that schedule and list, but you also set a time limit. And a number of times limit. It is IMPOSSIBLE to do it all, all of the time. You WILL go crazy and believe me when I say, it's an ugly place.
I think it is perfectly acceptable to let him lay on the floor and stick his hands in his mouth. He has to rest! Who wants to be in school every minute of the day? Even if school is fun, you sometimes need a chance to just sit and chill.
At one point with Daniel, after a bunch of tests and he was you know, three months to three years behind every other kid his age and about the only thing he did age appropriate was breath, I just had to say, don't tell me everything. Write it all down and I can read it when I am ready. Let's start with the five most important goals. It forced the OT (oh, getting Daniel to eat was a FREAKING nightmare! and I won't even get started on his feet. You would think we were stabbing bamboo rods up his feet - the way he screamed! Then turn up the oxygen because he's getting blue ... Do you remember how he wore an Elmer Fudd hat, mittens, and a blanket on his shoulders when we moved to Spokane? Sensory issues? Anyone? Anyone?) to make a decision about what we were working on.
I think it is easy for therapists to get wrapped up in what isn't being done - and they have to document all of that because that is how you get services - by proving that there is a need. And seeing a bajillenty kids a day makes it easy to look at the diagnosis and not the person.
It totally sucks to look at other neurotyp babies. I visit taught a lady who's baby was born the same day as Daniel. I would Visit Teach her and think, Really? This is an inspired thing? I HATED seeing what her child was doing that mine wasn't even thinking of. And it was the same way in the primary classes and on up. You should have seen the way the Spokane boys made fun of Daniel when he turned 11 and was "welcomed" into scouts. Three of the youth sat there and did the hand shake across the chest and stuttered and looked down like Daniel did (does) and made like seal noises. And I was sitting right behind them! I literally broke my heart. (Your brothers were not involved :) but it might surprise you who was.)
At the same time, you will NEVER take for granted even one little step Jake takes and having had it both ways, I can assure you, it is a tremendous blessing. Of course Rachel smiled, Ben rolled over, Sari clapped, etc. But DANIEL smiled! Can he see? He has vision! Miracles! He FINALLY rolled over? Well, blast, now he's mobile. I mean, YAY! Miracles! Clapping? Well, I don't think we ever got that. But he did eventually learn to sign "more" and that requires both hands moving to midline, so we'll count that as a yes. And he can clap now. I think. He doesn't like his hands to touch. He still sits with his hands in fists.
Back to you. Let's take a minute and look at all the things Jake CAN do. And let's do that every day. Three times a day. Maybe after every therapy session? And repeat as needed. Because let's remember where you came from and what the Doctors predicted and look at what an amazing kiddo you have! So amazing! Yeah, of course, he has delays. And things are going to be 10 times harder for him. It's going to take longer. Some times might never click. (Daniel still can't do basic times tables and he just barely learned how to ride a bike - he is 14.)
That's okay. Slow and steady is good. Progress, no matter how small is good. A worth celebrating.
Days like the one you had are inevitable and I am so sorry. I wish it was going to be easier for both (all three) of you.
You are doing amazing! You are such a great mom and so wonderful! And with this and another hug, I complete the novel that I wrote, just for you.
Post a Comment