Tuesday, April 20

advocating, fighting, whatever

I'm the kind of gal that likes things to be easy-going, light & fluffy, nice & cheery. I'll be the first to duck out of the room if the conversation gets heated. Let's all just be happy and smile, okay?

But now I'm a mother. And being Bugg's mama especially, I've had to learn to really speak up. Like when his pediatrician brushed me off when I said Bugg needed a certain blood test done. Or when the operator at the children's hospital was taking her sweet time while he was having a seizure (I did call her back and apologize for being so impatient). Or the time when I was going to have to pay for a summer movie pass when he was only two. Puh-lease. Trust me, he won't even watch it or care.

For over a year now, I've tossed the idea back and forth to ask my city's parks & rec to install a special swing at the park. One that can accommodate children with special needs. But why would they listen to lil' ol' me? I'm sure they've got lots of other pressing issues in these stressful times, right? But Bugg can only swing in these little bucket seats for so long before he'll get too big and he can't sit up in the regular swings. But why would they listen to lil' ol' me?

I love to push my girls on the swings. The underdogs, the rush of wind, the freeness, Meeskii singing, "I believe I can fly!" at the top of her lungs, Rooskii flapping her arms & legs with giddiness.

Sometimes my heart sinks when I see Bugg over there on the side. Although he hangs out patiently, I wonder if there just isn't something that I can do so that I can push all my babies on the swings at the same time!

And now, I find myself wanting to put on boxing gloves and take to the rink. I just found out that this dear sweet angel, Miss Britt........

.....will no longer be Bugg's one-on-one aide next year in preschool because of a budget cut. Instead, there will be "floaters." My heart just sunk when I heard this news.

She knows Bugg. She loves him. He loves her. Miss Britt knows his mannerisms, his cranky cues and what to do, how to comfort him, how much to push him during therapies, what he enjoys. She writes me notes on how the day went and does the cutest projects with him. She comforted me that day before school started when I was choking up and saying that it was really hard to send him to school. I knew he'd be just fine with her. And this year has been so wonderful. I was looking forward to next year being the same.

This just isn't okay with me. At first, I just accepted it. Well, he still will have his fantastic teacher. I do really adore Miss Rachael. But he needs a one-0n-one. He needs consistency. I need it, too.

I will fight for my boy. I can do it. But I'd love your help. Please?

What should I do? Have any of you "special" moms had to deal with similar stuff? What worked?

I'll try anything and everything. And if that doesn't work................

.....Bugg & I will bake. We'll bake cookies to take to the budget-cutter peoples. That'll get 'em.


  1. If your cookies can't convince them, then nothing will! (The root beer ones were fantastic by the way!) If that's the same Miss Britt I know (I think I had her son in one of my classes) you are a very blessed woman, she is amazing. I wish I had more insight for you, but I'll keep you in my thoughts and prayers!

  2. GO, FIGHT, WIN! and if that doesn't work, CRY, 'cause that's what I'm doing. Seriously, what can this Grandma do to help?

  3. I wish I knew! I know things next year will be much different. Our teacher says its going to get bad, really bad if your in Jordan school district in paticular! I'm ready to run for California and never look back!

  4. Oh that post was tender to me... I'm not a "rock the boat-er" either, but we can be brave when it comes to our kids right? Maybe you could try to get the the one on one that he needs written into his IEP because then I think the school district is bound by law to make it happen? But hey-- cookies always work for me... especially when they're still warm :) GOOD LUCK!

  5. Gosh, I wish I could help with some ideas... I totally hear you and I think you're a fantastic mama to some amazing kiddos! Good luck, I really hope things will work out for your super special family! I'd fight for that swing too!!! And for the budget cuts - although this could be a harder one to win. I'd go at giving them a phone call a day, maybe with persistance it'll work?

  6. If I can help let me know, otherwise fight! I know of alot of cities that have special parks for wheel chairs.

  7. Theresa might be able to give you some hints about the IEP thing. That might be a really good place to start.

  8. The IEP is definitely a place to start. If it's in the IEP then the school and the district has to follow it or they're in serious trouble legally. Good luck.

  9. Your post has me crying! I've been fighting too. Talked to my supervisor and sent some special requests. I do have something we can try. I'll talk to you today! So excited for lunch by the way, you are amazing!

  10. Check to see if you have a parent liason in your school district that you can talk to. Their job is to listen to the parent and help them voice their concerns with the school. In most districts they will not put the need for an aid or a paraprofessional in the IEP because they are then legally bound to provide one but you can establish the need in the IEP and they are required to address the need which may lead them to one on one support. I have a great article I will email to you shortly. I hope everything works out!!!

  11. Get this blog into some kind of newspaper article, twitter link, facebook page for the local media. Have your local district rep read it, so they can forward it to someone who makes decisions about swings AND teacher aides. Then they can hear you without you having to directly talk to them. Make your son's needs local news, and get the people who do "fight", fighting for YOU. Your blog voice is more powerful than you might think.

    then make loads and loads of cookies.

  12. Oh, you sweet girl! I love it....if speaking up and being aggressive doesn't work, "I WILL bake." heehee! The power of sugar, flour and a cookie sheet!

    I hopped over from Kristi's blog after her mass invitation to come visit you--and I'm SO glad I did. I can tell...I need your example and insight and humor.

    xo Crystal

  13. Dangit! The above comment is from me, Crystal; my mom was signed in. Oops!

    And--I forgot to mention: go to see Mique at her blog....she'll give you ideas. She's a mother of an autistic cutie and she fights for him daily. I have a feeling she will know how to deal with school issues, IEP's, etc.


    Tell her Crystal sent ya! I love Mique!

  14. I don't have experience with anything like this, but I would think that persistence would pay off. Administrators do get weary of people who won't go away!

    And fresh home-baked cookies never hurt.

  15. I am not a special needs mama but I just wanted to say that Bugg is absolutely adorable. It broke my heart a little when you asked why the park folks would listen to you about installing a special swing. I would hope that they would listen because you are not the only special needs mama looking to let her child live and play like other kids. There could be dozens or hundreds of other moms in your area thinking the same thing- "Why would they listen to me?" I hope they listen. I also think a bake sale is a great idea. Best of luck in raising your beautiful family.

  16. I have been fighting this fight here in NC for 3 years. Ben has Down syndrome and autism, but they won't provide a 1-1 for him, even though he has severe safety concerns and behaviors. I have been given the reason that the 1-1 aides are more necessary for the more medically fragile children, but I have yet to see even them get an aide. I would talk to a parent advocate and see if they can help. They know the laws and can attend meetings with you. Perhaps you can get one...wishing you luck.


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