I posted this on the book of faces earlier today, and was encouraged to blog, so I figured I would put it out here, kind of as an encouragement to any other parents in that dark place of being told you’re wrong, that everything’s all sunshine and roses when you’re in the bushes.

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This is from when I took little man for an evaluation right after we moved to SC. He had been receiving speech twice a week for over a year, and PT almost every week (with progressions/relapses) for most of his life. When we moved, it took almost a year to find where to go to try to get him back into therapy. They were with us for maybe 45 minutes, and most of what they saw was below average, yet they stopped the interview to tell me that he was a ‘normal’ little boy, and his delays were things I needed to work with him on (because I obviously hadn’t cared enough to try). I was so hurt by the way we were treated, as though I was making up his problems, and I needed to do more for him.
Fast forward just over 3 years, and we have diagnoses of Autism and Muscular Dystrophy. This sheet of paper still makes me soo angry, I wanna hit someone and cry all at once! They didn’t even try to care about my baby, they told me my only recourse was to get him into pre-K, which, they told me was only for the poor or problem kids (they did allude that we had a chance, though). We were treated like less than human, like we didn’t matter. That is never okay.
I post this, one, because no one believed me when I told them this happened. it obviously did, and two, for the parents out there still struggling, with the questions. If you feel that there is something not right, keep pushing. I had to go through a few doctors, with a few teachers making complaints that I took to one, who finally, listened. From there, our lives have been challenged, and, yes, I wish he had an easier life, and was a ‘normal’ little boy, but he is my boy, and he is my heart, and I will fight for him every day that I draw breath.
Don’t let one person (or even a bunch of people) make you doubt yourself! You know your child better than anyone, and you HAVE to be their advocate! I dislike making controversy as much (if not more than) anyone else, but I am his squeaky wheel. If I feel that he is being shelved, I keep making noise until someone listens and tried to fix the problem. That’s what we are supposed to do.
We were given these wonderful little people to care for, and to help prepare for the world. Sometime, the world isn’t prepared for them, so we have to pave the way. Make ripples. Make people step aside and say “Wow, there goes a true Momma bear!” Hold your head high, and shout it from the rooftops, that our kids are here, and they deserve respect and dignity, and a fighting chance!

 

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Random Reflections

As I sit here, at work, and think about the last few weeks, I realize that I really really need to post more! So much happens on any given day, and, if I don’t write about it that day, it is so easy for so much to get lost in the shuffle.

For instance, I learned not to follow directions on light fixtures. Several hours, and 4 rehangs later, it didn’t work, so, using what I learned about not following the directions, I hung another fixture that had been a sort of hanging lamp before, in ten minutes, and it works fine. My arms were mad about holding the first (heavy) fixture up for so long, and my feet felt as though a permanent impression of the ladder step was embedded there for a few days. That was fun. (*note sarcastic tone 😉 )

Watching my daughter blossom in our new neighborhood, making several friends already, while my son goes from disinterested to broken-hearted over the semi-loss of his best friend, has left me conflicted. Of course, I never want my daughter to be held back for her brothers sake, but I don’t want him to hurt as she grows into her own person, either.

As much as it warms my heart when he tells me that “When I grow up, and you and Daddy move, I’m going with you. Daddy said he’ll kick me out, but I’ll move in in your neighborhood so I can always be close” it also breaks my heart. I love my children, and, right now, cannot imagine life without them in their rooms in my house, but I want them to grow up, get married, and have their own families for me to love. His Autism has always been so mild, and I am so used to it, that I rarely even think about it anymore, but I know it’s there, and I know he struggles with some things more that others, and being sociable is a big one for him. When I allow myself to dwell in the worry, I wonder if virtual schooling is really right for him, or if i should have him in a school for kids like him, or a regular school with an aide, so it forces him to flex his social muscles, and step out of his comfort zone. When I think of that, though, I think of how he was bullied in pre-k and kindergarten for being so different already, and cannot fathom putting him in that kind of situation again, knowingly.

Then, when I think about his schooling, I think about my daughter’s schooling, and worry that she may be jealous of all the time I spend with her brother while she’s in school. I have offered to try virtual with her again, but she loves being a social butterfly at school, and does pretty well (if she’d focus and remember to bring papers home for me! Of course, that’s a whole other bag of beans!). I would love to do more mommy-daughter things with her, but, with my school schedule, her brother’s therapy schedule, then my job on the weekends, I’m just not sure when.

Thankfully, through all this insane-wanna-bite-my-nails-and-pull-my-hair-out craziness, my wonderful handsome hubby is there to pick up the slack, and take over when I need to disappear for a few to finish a paper or take a bath. I hope he knows how much he means to me. I try to tell them all everyday, but have to wonder sometimes if I actually said anything, or did I just mean to, and get sidetracked again by the next thing that’s been gnawing at my time?

Ugh. Well, this has been a rambly post, and I keep  meaning to take pics as I work in the house, but, yeah, not the best brain going on over here right now, so maybe soon? I will try to pop back in soon, and maybe do a post about Duchenne, Autism, a random diy project….. whatever. If anyone has any requests for what you all would like to see here, just leave it in the comments, and I’ll see what I can come up with for ya! 😉

lol (as my daughter says “Lots of Love”!)

Viv

Oh the insanity!

Ok, so sorry it’s been awhile. I’m still new to this, and have to remember to make time to post, even when life is insane.

Anyway, to catch everyone up, we put a down payment on our first place, and have spent the last few weeks trying to get it fixed up so we can move in. There’s still a TON of things we need to do, but it is (mostly) livable now, so we are moving this weekend. Actually, the Hubs and Monkey Butts are already there, but I work, so everyone is enjoying the new place out in the boondocks but me – can you hear the whine through the screen??? Totally not jealous. Nope, not me! 😉

We thought we would be able to move in sooner, but discovered that the water pipes – every stinkin one of them – had burst in the last couple of hard freezes we had in the area. Thankfully, they are all PVC, so super cheap to fix. My Handy Hubby took care of that while I did the normal mom thing, and trying to find bargains, as the new place is huge compared to what we’ve been living in.

That brings me to the old place. Not to sound bitter, but when we rented it, four years ago, the owners wanted to sell it. We offered at every lease signing/income tax time to buy it. They kept putting us off, then, last year, INCREASED the purchase price by five grand! Yeah, because the thirty-odd thousand dollars you’ve gotten from us in rent, (which you said would be put toward purchase if we ever decided to buy!) was nothing. We told them last year we’d be looking for a bigger place for us (we had dreamed of adding on a room, and doing some renovations, some of which we did, with permission, that they then decided they didn’t like and expect us to undo before leaving) so when we gave them notice that we were paying our last month’s rent, they seemed okay.

Until today. Today, while I took my kiddos to the zoo for my son’s birthday, and as the Hubs went to find a few more birthday gifts and the cake for Little Man, they pulled up and asked for an extension cord, so he obliged and let them know he had to go (I mean, we did tell them we were moving! It’s not like we wouldn’t be totally busy on a Saturday when they drive an hour to ‘stop by’ with no notice!) Anyway, I pull up before he gets back, and they were gone, but there was a For Sale sign in my front yard!

I get that they can do that. I do. It’s just the principle of the thing. We offered to buy three years in a row, only to be rejected, and before we leave, they put a for sale sign up?? Not even a For Rent, or Rent to Own… Nope, just a nice little slap, like they were waiting all this time for us to pay the mortgage off for them, so they could sell it and make pure profit, with a note on the door for the Hubs to call them. There’s a lot of history to the anger, but I will spare you that. It was just a bit surprising, and irritating. Even a friend who saw the sign and knew all that they had asked us to do before we leave (knowing we aren’t getting the deposit back, no matter what, and we paid 1st and last 4 years ago, and chose to give up the last for some insane reason that I don’t quite understand) said that was wrong. All the stuff they didn’t repair, they’d ‘like’ us to before we go. Yeah, hon, I’ll get right on that. Not! Those are all the things we tried to take care of on a limited budget, and would have fixed had rent been more manageable, or if we thought we might someday own it, but that were still their responsibility. 

Grr! Sorry for the rant. I promise my blog isn’t going to be like that. I will be uploading some before and after pics of the new place soon! I was going to tonight, but they are in my camera at home, and I am at work, so waah! We are still mostly in the ‘before’ stage, and some ‘during’ but the ‘afters’ are going to be awesome, and I can’t wait to share it all with you guys!