9.17.2009

Doggone It

Supplies : Paper - Scenic Route and Basic Grey

A super simple dog card! I really love these dogs from the June Bug Basic Grey line, they are so quirky and cute. And even though I don't much care for my own handwriting I find that it goes okay with these pups. This one I made just to use up some more of these layout scraps. They are too small to really put on another page so I thought if I could make some cards with them right after then the scraps won't just sit in my stash forever ^_~. And Paul finally got a chance to take a look at my laptop and got my connection fixed so now I can get online again, yay! The first few days were hard but after that it was actually really nice. I got a lot of things done that normally I wouldn't have gotten around to until weeks later and our home's energy is so much clearer now. I did a lot of reorganizing and purging that I've been meaning to do for weeks. I've also gotten in a lot more time with Caitlyn working on all the things she's struggling with. This next part is a lot of venting, just to warn you.


Caitlyn had been working in speech therapy as well as going to preschool for a year and half before Kindergarten and this first month of school has really tested her limits with 1-3 hours of work at home a day between homework from school, therapy homework, and then trying to work on the skills her classmates have already mastered that she is having a hard time with. She's still pretty behind in her speech but at least her educational skills are starting to catch up more to her peers' levels. I feel bad because there are so many times where I think she finally gets something after months of working and then I hear about how other kids master the same thing in a week. One of our nephews who will start Kindergarten next year is already so ahead of Caitlyn and his mom says she only spends 10 or 15 minutes a day working on kindergarten prep with him. I feel so jealous and discouraged when I see how easy it is for her kids and all the time I spend working with Caitlyn to not even get half the results. When I mentioned we've been working on the alphabet for over a year she gave me this unbelieving look like how can it be possible to work with a child so long and they still not be able to identify all of the letters.


I know we're so lucky to have Caitlyn. She's hilarious and loving, energetic and creative, and even our speech therapist has said if you have to have a kid on the spectrum, she's the kid to have. I love her so much and I would never change the person she is, but even with all that I still feel these swells of sadness that we have to work so hard, that she has to work so hard, to learn things that take other kids less than half the time with half the effort to learn. Sorry, I'm falling into a little pity party here, it's just so hard to work and work and then celebrate a small victory only to have other mothers mention how if every parent would only spend 15 minutes a day with their child, the kids would never be behind. I spend sometimes hours in a day and Caitlyn's always been behind. Those comments break me down so badly because so often even though I know most of these moms don't know what it's like to have a disabled child, I feel like they are blaming me for why Caitlyn's not doing what all the other kids are doing. I know I just need to keep at it, to keep encouraging her and helping her to learn and her therapist and even other mothers with older disabled children have assured me that she'll be fine, the people I should be listening to are saying she's doing great. But all those other people, the ones that just have to get their comments in about parenting when they have healthy normal kids, they always strike that nerve that seems to say 'You're a bad mom. It's all your fault that Caitlyn's behind.' Some days I get angry because they don't know what it's like to work so hard and watch your child fail again and again on the same things. Most the time I'm just sad because Caitlyn spends so much time working and every time someones has a comment about Caitlyn's shortcomings it makes me feel hopeless because it feels like all that work doesn't show.


It just wears me down, day after day. When it comes to disabilities people seem to only see it as you have to be severe or you're not handicapped at all. Caitlyn is one of those kids who can run and will sing and is friendly. At first glance she seems like a normal kid, you wouldn't know she's on the Autism Spectrum, you can't really see that she has SPD. You have to spend time trying to talk to her to see her handicap and sometimes even then it doesn't seem like much until you have her right next to another kid or ask open ended questions. So many other parents I've met have viewed her as there can't be anything wrong. Most of our family members treat it like it's nothing as well, the same as with Paul's MS, so we don't even get family support. In fact it's usually only from other moms I've met at the preschool or at therapy that have ever even shown an interest in listening to what Caitlyn goes through. Even if our kids don't have the same difficulties, it seems that a lot of us have the same struggles and I've learned so much with all of my conversations with these other moms even if it was just one time. But I have such a hard time really connecting with them. Most the gals I've met are 10 or more years older than I am, and none of them I've met have a disabled husband as well. I feel so alone so often because I'm constantly dealing with worries about Paul's MS, especially since he hasn't recovered much at all from these past relapses, while also dealing with trying to help Caitlyn's challenges.

Kindergarten has really been an eye opener, both good and sad. It's great to know what we need to work on each day to help her but to watch and see when I'm volunteering how far the gap is between where she is and where the other kids are is tough. That first day was really difficult for me. I wanted so badly for her to be one of the girls breezing through the work stations, but she wasn't. Her behavior was good and I was so proud of that and she had a lot of fun so that it made it a lot easier. It's just so hard to watch her be unable to do what the other kids can, harder than it is for me to watch Paul with that same struggle, though his is mostly physical. There's something about having to watch your child work through a disability that hurts so much more than watching your spouse. I always thought that his first relapse would be the hardest thing in our marriage I'd have to go through, that after those really hard 4 years I wouldn't have to go through that again. It's never gotten easier to watch him go through a relapse and in fact it's only gotten more worrisome since we have kids now and I worry how it'll effect them. But even all that doesn't compare to how hard it is to watch Caitlyn not be able to keep up with her peers. The amazing blessing about her is that she doesn't even know she's behind. She takes each success as a huge victory and we celebrate it with her even though inside I'm still worried because I know she still has so far to go. And her being so happy about every little thing helps so much every day. I don't know if I could do it if she weren't such a funny and positive girl all the time. I pray she keeps that her entire life, even after she understands her challenges and the hardship they might bring. Thanks for reading my spout and I hope you enjoy the card and have a happy Thursday!

6 comments:

Lori said...

Marjorie,
Your post has brought tears my eyes. Mothers of other children can be so mean. I went through similiar things when my children were in school. Have you told these mothers what you just told us? Someone has got to understand and have compassion for you. What you need to do is make one good friend. Is there a little girl who plays with Caitlin? If so, invite her and her mother over for a play date. Or go somewhere together. This way you can have a friend too. That's how I used to make friends. Funny, but now that my kids are grown I don't have any friends. Not really, but just not as many. Also, hang onto the thoughts that other people have told you about how well she is doing. And, try not to compare her to the other kids. Enjoy her for who she is. She sweet little girl who you adore.

Katie Skiff said...

You have to remember that those other mothers don't know what you are going through. So you really need to ignore their comments. One thing that I learned in the last few years, you aren't that good and you aren't that bad. You are not that good that these mom's only think about you and what you are doing wrong. And you aren't that that bad, meaning that there are people worse off than you are. If you think about how much time you worry about yourself and what others think of you, don't you think these mom's spend that much time worrying about themselves and what you are thinking of them, rather than thinking you are a horrible person. Does that make sense to you? They do not know where you are at in your life, and until they do, they can't judge you. So you have to not let their looks or comments get to you. I know it's easier said than done, but it's something to remember when you feel bad. Smile, reassure yourself you are doing the best you can and move on.
I think that maybe getting into a group or starting one with these other moms who understand you would be helpful to you. Talking with someone who understands can only help. At least they know, so it may be fun to get together with them. You ALL would need that venting time.
Enjoy the time that you spend with her working, and just keep working. She is a fun and enjoyable lil girl, and she's yours. Be thankful for the good, and look towards it.
As a wife of a paraplegic husband, I do know that there are down days, weeks even. Talking to someone, praying, and looking towards the goal, and the postive lights helps make those days seem fewer and farther between. Using this blog as a sounding board is also going to help . Good luck, and keep your chin up. You are a great mom, and as long as your kids know they are loved and are happy you are doing a pretty good job!

Paisley Petals said...

Caitlyn is so lucky to have you fighting with & for her! I taught public school for 7 years and it is distressing to know how many students are struggling and NOT getting parental help - some were identified disabled, but some parents wouldn't even seek out the diagnosis! So she is lucky to have you ;)

What I've found is that when others make comments to "one up" me, it's really just that they are feeling inadequate and need validation. I would certainly hope that if they knew your situation, they would behave differently.

This parenting gig is tough stuff! Btw, I've enjoyed your pages this week :)
-Karen

Alanna said...

First, your card is darling. Second, my heart aches for you. I honestly don't know what to say other than I know you are up for the challenge. I pray that you won't let others get you down. And Caitlyn is so lucky to have such a good mom like you. I'm glad to hear that she doesn't seem bothered about what her peers are accomplishing.

Hugs are going out to you today!

scrappin' happy said...

Marjorie, I don't know exactly how you feel but I do second guess myself and ask myself what I can do better but bottom line is your girls know you love them and you are doing everything you possibly can to make their lives better. I know it's hard to not get down about comments but like someone said before...they need to feel "one up" on someone. Mom's in particular are hard on themselves and on each other. Hang in there and I think you are doing an AMAZING JOB!!!! Best of luck and Take care, I'll be thinking of you. ~Shannon

Jena said...

I know this is an older post, but I had it saved in my inbox until I could get a chance to read it all the way through, and that chance finally came today. Anyway, all I have to say is hang in there! I can't even imagine what you must be going through, but I wish you all the best - take care!