Okay my title doesn’t make sense.  There’s no such thing as planning the future when you have a child with special needs.  The future is 2 minutes away.  Sometimes the future is 37 seconds away.  I would venture to guess that any parent of a child with special needs might have a slight panic attack when thinking about the future with their kiddos.  I know I do.  So many people have asked me what we’ll do for Emma’s school after her 2 years are up at her current school.  And of course I’ve asked myself the same question.  It’s a hard answer.  I actually can’t answer, so I don’t.

Last week we took Emma to see a peds dermatologist at PCH to take a peek at a mole she’s had since birth.  He gave us good news in that it didn’t need to be removed.  We were thankful, because removing this mole meant general anesthesia for her.  And that’s always tricky with her.  Anyway, he gave us changes to monitor, should they occur.  And then he was very direct and said that we’d be able to closely monitor the mole as she would be living with us indefinitely.

It’s a tough pill to swallow.

Our daughter will live with us indefinitely.  Chances for marriage are slim.  Chances for children are slimmer.  She may not carry a full time job.  Or go to college.  I’m of the philosophy “never say never”, but I’m also realistic.  I don’t need to jade myself into what may be.  Because truthfully I don’t know.  But like I said, I’m realistic.

We’ve thought about the future in that we know where we want to live.  We’d like to buy my parents house and give it a facelift.  There’s a great backyard.  It’s a nice size.  Big enough to build a little guest house back there.  That would be for Emma.  It’s what I think about.

While yesterday I posted about a ruling where scholarships for kids with disabilities was found to be constitutional, I also was shared an article about a friend of mine.  Her son has special needs.  She hired an advocate.  She hired an attorney.  In fact, she hired the same advocate and attorney as I did.  Her case went to court.  She won.  And now the district is suing her because they say they shouldn’t have to pay for her son’s private school tuition.  The district is now appealing, arguing that the judge didn’t have adequate evidence to overrule the district’s decision to place her son at a school within their district.

I really didn’t think there was a special education department more screwed up than ours.  I was wrong.

Please take a few minutes and read Krystal and her son’s story.  It’s a story that’s becoming all too familiar.  Don’t you think?

Thanks to Christa for passing along this article to me today.  Apparently the state of Arizona took one positive step in the right direction for education.  There is a scholarship fund called the Arizona Empowerment Scholarship Account that will fund 90% of the state’s allotted per-pupil money that would normally to go the public schools, to families of students with disabilities who need alternative education.  My advocate told me about this when we were fighting the district.  And actually, the special education director suggested it to me after they denied our request for district-funded placement.  That’s when we took the gamble with our attorney and settled out of court.

However, there have been too many times when I thought about where Emma would go after those two years are up (the two years of private education won in our settlement).  It would be the Empowerment Scholarship that I would apply for to help us continue her private education.  Fast forward to now…there are a few groups who oppose these scholarship programs for these students, citing that they are unconstitutional and take away resources from the public schools.

A Maricopa County Superior Judge ruled on Wednesday that a scholarship fund for students with disabilities DOES NOT violate the Arizona Constitution.  This is a pretty big deal, as this will help other families whose special needs kiddos need alternative education afford private placement.

Please take a few minutes and read the full article here.  It is really an eye-opener.  I’m pretty happy about this step in the right direction!

What are your thoughts on the article?

Emma’s coming up on her 8th birthday.  Santa kind of let her down by not getting her a new Princess bike.  Sadly, Sally hasn’t really caught her attention much either.  So for her birthday, her parents are stepping up their game where Santa dropped the ball.  She’s getting a bike.  Here’s is why she needs an Electra Hawaii Beach Cruiser:

• It matches my bike.  For real.
• It’s pink and pearly.
• It’s got one speed…she’s not going to be needing to switch gears anytime soon.
• It doesn’t have the complications of hand breaks.
• There’s plenty of room for a basket.  And a bell.
• It would be easy enough to have a bike shop outfit this Cruiser with training wheels.  And still keep it looking retro.
• She would love it.

So we need to get it.  That much is obvious.  What else is obvious is that we need to get our butts in gear (no pun intended).  Her birthday is less than a month away.  Anyone know of any good bike shops that could put some extra wheels on this bad boy girl?  Maybe I should contact Electra.  I bet they could help me!

Electra for Special Needs!

(By the way, Electra has no clue who I am.)  (And I’m also diggin’ this pink color!)

Post Edit: I went to the Bicycle Ranch on Tuesday and they totally hooked me up with this bike shown above!  They also will outfit it with some snazzy training wheels so my girl feels safe and secure. If you head over there (they’re in North Scottsdale) Markus and Chris will take care of you!  I will be bringing my own (pink, natch) beach cruiser in this weekend for a tune-up!

“I think the heart just gets broken — wide open.”

-Amy Upchurch (on how becoming a special needs parent changes a person for the better)

So, upon taking encouragement from my trainer, Brandon, and Premier Fitness Solutions, I am going to blog about my weight loss.  My goal of blogging about my weight loss is to work to keep myself accountable.  And to just be gutsy and put it out there.  Besides el-bees, what do I have to lose?

I’ve been working out with Brandon for almost 2 years.  I think my 2 year mark will be in April.  I should really look that info up.  I am now just really starting to become serious about my weight and health.  Before, I was working with him because I knew I needed to.  And I did have fun.  There’s a small group of us that work out together with him, and now (praise God!) we get to work out 3 times a week together.  But 2011 was a mess, as you may well remember.  I was just treading water, trying to keep my head above the surface.  There was no effort on weight loss, or keeping myself healthy.  If anything, I was using food to reward myself for surviving all the trials and tribulations we went through as a family.  I know I”m not the only one who emotionally ate.  This is not new information.  I worked out and watched shows like Biggest Loser with the best of intentions.  But my heart and my head weren’t in the game.  And seriously?  That’s like 85% of the challenge.  Once you’re really focused on weight loss, it can be a little easier.

So with 2011 coming to a close, I knew I wanted to focus on ME for 2012.  Of course this isn’t supposed to come off sounding selfish.  But I truly believe that when I am the best ME I can be, I am truly the best mom and wife that I can be.  I really felt like I was just passing through life being a mediocre mom and wife.  Like I said, I was treading water.

While Emma is still having her ups and downs, things are a lot more stable with her.  We’re focusing on her behavior, and working on keeping a very regimented routine in her life.  Easier said than done, but still.  Stable.

Mason?  Well he’s just a charmer.  I love that kid.  He’s challenging at times, but what a wonderful light he is in our lives.  As long as I can continue to get daily kisses and cuddles from him, I will be a content momma!

Seriously though.  Back to me.  Brandon and I talked at length about the next steps for me.  Actually, I started this journey back in December.  Before the hoopla of the holidays.  Crazy in that I started a weight loss journey before the holidays hit.  Smart in that I started a weight loss journey before the holidays hit.  I was able to keep myself in check throughout the whole season and in the end, I actually lost 3 pounds throughout December.

Now I am working out at least 3 times a week.  That’s with Brandon.  And if I need something at the store (like a few items), I will ride my bike.  I’ve been riding my bike probably 3-4 times a week.  I’m not talking miles and miles.  But something is better than nothing, right?  And I’m being green.  And my bike is cute.  It’s a pink beach cruiser with a basket and a bell.  Who wouldn’t want to ride that?

My diet has completely shifted.  I wouldn’t say I’m “on a diet” or that I’m following a specific plan.  I am consciously cutting my carbs in the grain form.  Not a lot of bread, wheat, pasta, potatoes, etc.  I have severely cut back on the sugar intake as well.  No soda, no desserts, and so forth.  Am I perfect?  No, but I don’t strive to be perfect.  Because I like sugar.  And carbs.  And eating is social and I’m a social kind of gal.  But my mind is always on my nutrition and keeping it in check.  If I go out, I have a plan.  Last Friday we had a family dinner out.  Wanna know where?  Mexican.  MEXICAN.  Um, I love Mexican.  Hellooooo chips and salsa.  Would you believe I went the whole entire dinner without one chip.  Not. One. Chip.  And my dinner was shrimp fajitas.  I will say, though, I did have 2 tortillas with that.  But I’m okay with that.  Because I’m not perfect (see above).

Brandon and I also made another smart move by weighing me in every Monday.  That helps keep my weekend in check.  For example, brunch on Sunday with the family consisted of deli turkey meat, and greek yogurt with berries.  Word.

So on here, I will update you on Tuesdays with my weight loss from the previous day.  This past week?  I lost 5 pounds!  Here are my weight losses for January:

1/9: 3 pounds

1/16: 4 pounds

1/23: 5 pounds

I don’t expect to keep up these bigger numbers.  Honestly I’d be thrilled if I lost 2 pounds every week.  But I will take the big numbers as they come.  That’s for sure!  My goal, if you want to know, is to lose 40 pounds total.  And as of now…I’m about 25% there!

So can you help me be accountable? No falling off the wagon for me!  I can do this!

I want to go shopping right now. I won’t, because I’m being good. But if I did, here’s what I’d get.

Tory Burch Silver Clutch

Long Pendant Necklace in Gold

Meyer Lemon Tree

Summer's Perfect Sandal…Tory Burch Miller Sandal

I wouldn't technically "shop" for Paris, but I'm itching to travel again.

What’s on your shopping list right now?  These, of course, fall under the Freebies and Discounts with ID.

In the beginning of December, I decided that I was ready to give away Jumping Waves’ first scholarship.  Going through a struggle with the school/school district is enough stress on anyone’s plate.  To not be able to afford the help that your child so desperately needs is a stress that no one should have to face. I chatted with my advocate because I wanted her input.  Did she have any current clients that needed some financial help?  My advocate immediately told me about a single mom who had already used her services.  Her son was already in a better place because of Kristina’s help.  Fortunately Kristina had used a sliding scale and reduced her hourly rate.  Unfortunately her bill with Kristina was still pretty high.  I felt like this mom was the perfect recipient of my first scholarship, and I was hoping to provide a little relief before the holidays.  Here is this mom’s letter to me.  It will tug at your heart.  (I have edited to leave out names and identifying details)

Dear Jessica,

I am writing this letter in hopes that you will grant the scholarship for advocacy assistance. My  two boys and I are in a whirlwind of hard times right now. I am not sure where to start as there is so much to say. Let me start my explaining why I can not fund my sons legal advocate and the need for a legal advocate and then if you need more info please let me know as my number is at the bottom.

I am a single mother of two boys with an income of $525 a month which has been impossible to survive on, but by the grace of our God, He has provided each month. My oldest son, Chase, is the one with multiple needs that have been neglected by his  placements with the public school system being in the Phoenix area. Chase’s diagnosis consist of several…. Austism, ADHD, bipolar, sensory integration, and other health impairments such as reoccuring encephalitis, encephalothophy, headaches, high blood pressure, and a heart condition that will require surgery in due time. Without going into extreme detail, unless you need me to, Chase has been inappropriately  placed by being in ED (emotionally disturbed) since he was in KG and now currently in 5th grade. He was also even placed in an MIMR (Mild Mental Retardation) class by our district last year with a normal IQ. Then they decided to place him in high functioning Autism class that was NOT appropriate either as they would often (15 times) restrain him for no reason, locked him in time out room by having 3 staff members hold him in there (documented by the school district), withholding food for negative behaviors (also documented by the district), ignored his SLD (dylexia), also his Speech and OT, for over a year, denied compensatory services when brought to their attention, denied Chase PBSI (positive behavior support initiative), FAPE (free and public education), withholding him from gen ed when service minutes say otherwise, not following IEP or BIP (behavior intervention plan) (proof via documentation via emails and paper with the district and audio), and the list goes on. My son is on a 1st grade level with reading and core subjects. Chase has many learning needs and has not been treated right at all!

Kristina Blackledge has been nothing less than an angel and has helped me get Chase to a safe environment where he is actually thriving socially, academically and emotionally. He now has hope where he lacked it before. He has friends when he had none, he loves to get up and go to school where he would aggressively act out before because of the anxiety he faced with school and bullying of staff and peers. The school district is trying to pull him from a place of peace and happiness and I must fight for Chase and desperately need Kristina to help us as I cannot do this alone. If I was in front of you I would get on  my knees and you would see my tears and pain while I beg you that you please honor this grant as the fight is continuing. I am currently in great debt with her at this point and she will not be able to help if I cannot pay. She has been so patient and with my health ( I have surgery tomorrow btw) I have not been able to pay her much less rent, Christmas or any other needs for that matter. I have been pulled from work permanently and have filed for disability and will not know for possibly 3 months. I have a 2 year old, as well, who may also be on the spectrum. So between doctor appointments for Chase, myself and my other son, that alone enables  me to work. He is also a victim of sexual abuse and has therapy 3 days a week at the house with behavior coaching as well. Not to mention all the other doctors as Chase was a NICU baby too born with meningitis, 0 ApGAR score and strep b. So as you can see Chase’s needs not only consist of academics, but medical. His academic needs are going to be a life long struggle as well, and in order for him to get what he needs I cannot give up this fight for my son. I need help and I pray that you will grant this scholarship on behalf of my son Chase. I thank your for your time and consideration. You may also contact me on my cell phone for any further questions. (Anytime before 3 is perfect.)

Cindy

You guys, Chase is just one more example of why I’m doing this.  His story is heartbreaking, isn’t it?  I’m pretty sure if I found out that Emma was being restrained and being denied food, I would go ballistic.  This mom needs my help, and I wish I could have paid her whole bill.  I’m not good at asking for help, but I’m going to have to get better at it if I want Jumping Waves, Inc. to survive and thrive.  I need to find paths that will lead to the perfect people to help me spread the word.  To help me financially.  To help bring awareness.

This is what I ask of you.  If Chase’s story touched your heart like I did mine, please pass on this link to your friends and family.  That is one way you can help me spread awareness.  If each reader could pass this post on to 25 more people, the opportunity to find that perfect path will open up.  On behalf of Emma and Chase, will you please share this story?

If you are interested in helping out, I have a “Donate” button to the bottom left, as well as a link to my Etsy page.

If you haven’t caught on yet, I’m in a bit of an advocacy kick.  It’s just my calling right now.  So I’m taking it and running.  My friend Kristen sent me a story today about a little girl in Pennsylvania.  Amelia is 3 years old and needs a kidney transplant.  The good news is she has a family donor who is a match.  The unimaginable news?  The doctor refuses to perform the surgery.  He asks, how could a girl have such a quality of life that would warrant this life-saving procedure? He is angry that parents could fight for their child so passionately.  AND THEN….he has the audacity to tell them that this has been hard on him.  Oh, I can only imagine.

This super-mom, Chrissy, has her own blog.  Reading her entry about this situation infuriates me and literally my blood is boiling.  But don’t get me wrong…this mama is one tough cookie.  She gives it right back to the doctor and the social worker who try to tell her that Amelia isn’t worthy of a transplant because she is mentally retarded.  But they leave the conference room with no support from the staff.  You NEED to read her story here.

You are welcome to include a post on it after the about.com story and there is a link to the Facebook page for the hospital.  Feel free to leave a message of disapproval like I did.  I hope this angers you like it did me.  This is one instance where this could become a grassroots effort to make a difference for this little girl.