HomeMom on the Run
Member Since: September 10, 2007 Last Signed In: July 21, 2008 Blog Views: 2446 Send To A Friend Sign Guestbook Add as a Friend
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You know, I normally consider myself a very happy person. I always try to look at the bright side of things; I tell myself that things could always be worse, and to be grateful that in my case, they aren't. Still, I'm almost at my breaking point.
Bee was diagnosed back in December 2006. We got our case worker, and he was referred for ABA therapy in February 2007. We have been waiting, ever so patiently, since then. I've called, written letters, begged, bargained, pleaded, even found a private therapist for play therapy once a week. Anything to help Bee. His therapist was an ABA consultant, and she thinks he would benefit tremendously from ABA. Because of the structure - the kid loves structure. Plus, there would be someone else who would give me and my husband a break. Honestly, we're burned out. All anyone tells us is that there are long waiting lists. But I know of people, diagnosed shortly before or even AFTER Bee, who have had programs in place for months. So what are we doing wrong? We've contacted our local autism support group - NOTHING. We're not sure if we need an advocate - if they can do anything for us. We have our home set up for therapy - it's been ready since March - all we need are the people to start the program. We even have tutors ready to work! It is so frustrating. Mostly, because I see the progress that others have made with this program, and I want that opportunity for my son. I'm not saying that I expect the same results, but at least give him the opportunity! He was diagnosed when he was 3 - he's almost 4.5 now... all this time has been squandered. And on top of all of this, we find out that there's more stuff going on with Bee. Talk of medication and more tests... still lots of uncertainty. On the plus side, both boys are home sick today. But it's been nice just hanging out, and not being in a car, driving to and from school, therapy and the dayhome. They're chasing each other around the sofa right now. They're happy. Things may be tough right now, but I know that it will get better.
So, my therapist thinks that I need to allow myself time to grieve. Grieve the loss of the babyhood I didn't get to have with Bee, and the things that I had envisioned doing with him in his toddler/preschool years. I don't know how I feel about this - part of me feels like it's crap (though I totally love my therapist and she has been so helpful thus far); a bigger part of me feels like if I acknowledge these feelings, I'm giving up on Bee, and what he can/will accomplish. If I grieve, then it's like I'm actually admitting that there are things I wish had happened differently; thus, I don't accept Bee for who he is.
Has anyone else struggled with this? I wonder why I have such a strong negative reaction to what she's saying. I think the larger picture may be that I've been so focused on Bee the past few years, I've never really acknowledged my own feelings. I'm so conflicted about this, I'm just hoping that someone out there has struggled with the same thoughts. Not that I wish these feelings on anyone. You know what I mean. :)
Looking back over my posts, I found that I don't talk much about my younger son, Lee; so this post is all about him. :)
Lee is very much your stereotypical, younger sibling. He loves to be the center of attention; he achieves this by making us laugh, or climbing up on something (say, the table) and waiting for us to say "Lee, NO!". He adores his big brother. Wants to be just like Bee. Lee loves to draw pictures. Unfortunately, his pictures don't always stay on paper - I find masterpieces created on my walls, laundry basket, cabinets.... thank goodness for GooGone! He is still ambidextrous at this point, but seems to favor his left hand. He also loves to sing. He knows the theme to "Blue's Clues", and the songs "Bones" and "Octopus". And he knows some letters and numbers (all thanks to his big brother). Lee loves to be chased in a game of Peek-a-boo, and he loves to be hugged and cuddled. His most ticklish spot is under his chin. People always say that he looks like a junior version of me - he has curly hair and my eyes, for sure. But when he smiles or laughs, he looks just like his Daddy. He is loved and adored by everyone. Having him in our family makes it complete.
(or sometimes two or three or TEN steps back!)
It's humbling being a mom. It's VERY humbling being a mom of a child with special needs, having to do the walk of shame out of a store because your child is having the mother of all meltdowns because you won't let him stim off of flushing the toilet 20 more times. Luckily, those days are happening less and less often, as Bee gets older and finds different ways to cope. I'd been riding a high the past few weeks though. Bee had been doing so well in school and at therapies, he'd been happy and relatively tantrum-free; life was good! We'd turned the corner! And then it happened - he couldn't find the yellow foam #1 he'd been carrying. From the screams reverberating through the van, you'd think I was skinning him alive. I was honestly concerned that someone in a car near us was going to call 9-1-1 and I'd have to explain to the officer that no, I wasn't harming my child; he's on the Autism Spectrum and sometimes has moments where he can't be consoled and blah blah blah.... Luckily, that didn't happen. But that didn't stop me from summing up all my patience and calm to make it home without screaming back at him, taking him to his room for some "quiet time", and then going to my room and crying for a good 10-15 minutes. I realized it had been quiet in Bee's room for a few minutes, and so I walked down the hall and opened the door. He was on the floor, reading a book. He turned to me and smiled; I smiled back. "Hey, Bee - whatcha reading?" "Down on the Farm", he answered (his current favorite book). "Oh, that's a good one", I said. "Mommy, hug?" "Of course" We hugged each other tight for a few moments; Bee broke the silence. "Mommy, number 1? Let's go find it!" Yes, let's. I have to remember that there are going to be starts and stops along the way; detours, road blocks, u-turns, even open lanes with no traffic and shortcuts (you get where I'm going with this). But, overall, we're moving forward. Bee's enjoying the ride. And I'm happy to be in the driver's seat.
I hate these two phrases:
1. "I'm/We're going to get my/our child off the spectrum" 2. "You need to mainstream your child with an aide" I think I've made my feelings known regarding the first phrase. There's nothing WRONG with having a child on the spectrum. And it certainly isn't my goal to get Bee "off the spectrum". Many of our greatest minds were probably children on the spectrum. And they grew up to be adults on the spectrum - probably quirky or different, but that's why they made the contributions that they did. Thank goodness they were able to embrace their spectrum-ness. No, I DON'T need to mainstream my child with an aide. Why do people make such blanket statements, as if they know better than I what is best for my child? And what's so great about getting my kid in a "regular" classroom? So it would be better for him to be in a class where he's clearly overwhelmed socially (academically, he is at or above age level), just so I can say that he's in a "regular" classroom? I think that some parents can't deal with their child having special needs; and by golly, they're going to get their kids mainstreamed come hell or high water. I want Bee to be in the class that's best for him. I've spoken with his teachers, his therapists; my husband and I have talked about it, and we all agree that special ed is still the best route for him. He gets the attention he needs, he's in a smaller class with more help, he's not the odd man out, and he's still getting an age-appropriate education. What's wrong with that? I could very easily rant and rave and hire an advocate and/or an attorney and get Bee into a "regular" classroom. But I don't want to. I want him to succeed. I want him to be happy to go to school. I'm proud of my kid. The class that he's in does not define him. His diagnosis does not define him. /Rant. :)
Some of you may roll your eyes at that statement, but for me, it's a big deal. I've never been popular; friendships never came easy for me. I was bullied a lot at school - in elementary school, junior high, high school and even college. So I have major issues with trusting people and letting people get close (hence, the weekly therapy sessions!).
So most of my friends are people I've known since my childhood - I don't have friendships fostered in college, or jobs, or waiting to pick my kid up from school. I'm so socially awkward, people usually think I'm a snob, as I tend to stick to a corner and avoid conversation. But I'm really just incredibly shy. Anyway, enough of that. This is supposed to be a positive post! I met a new friend - I actually put myself out there, and met her for coffee. It was nice to talk with someone! She's a very nice person, and I look forward to getting to know her better. (And let her learn a little about me.) So, congratulate me! I made a new friend the other day. :)
Yep, it's IEP meeting time. What's an IEP, you ask? It's an Individualized Education Program. Bee has one, as he has a speech/language delay, and sensory issues. Oh, and gross/fine motor skills delays. So tomorrow morn, we'll gather 'round the table and review his old IEP, and discuss his goals for the upcoming year. At least I think that's what's going to happen.
You see, last year was a blur. We had just moved to the area, and we thought, at that time, we were only dealing with a speech/language delay. So his IEP meeting was with a speech therapist, and his preschool teacher. We reviewed his speech assessment, his teacher made some goals, I agreed with them, signed a bunch of papers, and Bee started school the following Monday. This time around, Bee's preschool teacher will be there. As will an administrator, a psychologist, and an adapted PE specialist. Assessments will be reviewed. Goals will be reviewed and revised, and/or new ones will be created. Experts will be heard. Bee's parents will probably be overwhelmed. Can you tell I'm a bit nervous? ***Edited to add: The IEP meeting was GREAT! I really shouldn't be so surprised - we haven't had any issues with the district thus far; in fact, everything has always been very positive. We are just so fortunate to have a team of people who all want the best for Bee, like we do! I'm so happy!!!!!
Anyone else feel the same way? I HATE MAKING DINNER. Always have. Even before we had kids, I hated making dinner. And unfortunately, my husband is a TERRIBLE cook, so it's up to me. I don't know what it is about this meal that I detest so much. My mom was a working mom, so she rarely made dinner at home. We usually stopped at some restaurant on the way home. My husband's mom had a home office, and LOVES to cook, so he grew up eating wonderful meals. I remember the first time I went to visit his parents - it was in the middle of summer, and his mom made a full turkey dinner, like it was Thanksgiving! It was great, but I can tell you there's no way I'm making a turkey dinner outside of a major holiday. Not gonna happen.
So when 4PM rolls around, I sigh, groan, roll my eyes, and find any reason I can not to start dinner. Playing with the boys outside always comes in handy! And then my husband calls around 5PM, asks what we're having for dinner, and it's 50/50 chance he's picking something up or coming home to a half-assed meal that I whipped up in about 20 mins. He never complains, but it's really not fair to him. So what do I do? Anyone have any tips? I even got desperate and did those Dream Dinners for a few months. But I really don't like them. I enjoy good food, I just don't like making it! How do I make preparing dinner fun? |