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lvazquez

May 2013

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IEP #6

Apr 14, 2013 06:47pm (EST)

Our last IEP meeting was two weeks ago. It was for OT determination. After waiting 2 1/2 months, "the team" determined that he scored average and does not qualify. They will stick with the 15 minutes minimum consult per month. The District OT doesn't even have to observe Mr.T in the classroom. How do we know she's really "consulting" with the teacher? Exactly.

This past Friday, we had our 6th IEP meeting this school year. This one was for ESY determination. The team said that he does not show regression of skills, but that he IS at a critical stage for social development and is not meeting those current goals. I asked how this 3-week ESY program is going to differ from his daily school routine? Is that teacher going to have training? We know the answers to most of our concerns. We are going to e-mail with the ESY Coordinator before we give approval. I asked if we could talk about other issues and they said fine.

I wanted to know if anyone on the team is really reading the daily communication logs and thinks that this is an okay way for a 5 year old to be spening his day at school? Mulitple sensory seeking behaviors, no one giving him the words he needs to express himself (ABA), and no one encouraging or praising for what he does do correctly. Where are the reinforcers? I told the team that he doesn't want to go to school and I am having a hard time justifying sending him. He isn't learning anything! We have 6 more weeks, just 6 to go and I proposed half-day Kinder for the remainder of the school year. I told them that they already received their funding, so if they could just work with us on this, we'd really appreciate it. This whole year has been a waste. When I got home, I opened an e-mail agreeing to half-day. Thank goodness! Chest pains be gone!

Sold hubby's car this past week too! Thank you Craigslist! Just a pic with Mr. T and hubby. Mr. T has discovered dragons (Mushu) and is watching Mulan in Spanish.

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Posted by lvazquez | Comments: (5) | Permalink

SCHOLARSHIP GRANTED

Apr 09, 2013 04:29pm (EST)

I really should check the mail everyday. I could have been beaming about this all yesterday afternoon. We got it!!! We were granted a scholarship from the Dept. of Ed. for next school year. We essentially are taking away monies from the District given to them by the State for our son's diagnosis. There are some extras for K-3 literacy materials and extra weights for qualifying categories. It will all help him.

Now we decide on a far away private school which would eat up the entire scholarship OR homeschooling with additional therapies. I'm really leaning toward the homeschooling and try it for a year to see. In addition to curriculum materials, I really want to get him some extra ST, PT, OT, music therapy, equine therapy, and regular social groups. Lots to plan for and even more to keep track of, but I'm game.

I also found out that I will have a contract for next year, part-time again, but it's there if I want it. Hoping it's for an afternoon schedule again as I'll have a better chance of finding care for Mr. T for 2 hours if we opt for the homeschool route. I also recently learned that I can use this scholarship toward a Hab B/Hab M-like program. If I can find an agency with availability and willing to drive to my area, this will also be life-changing for us.

Here's a pic from our Spring Break last month. So nice to see D and T in the same boat. Think we need to practice more before we go sailing . . .

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Posted by lvazquez | Comments: (7) | Permalink

A NEW POPE, A NEW CAR

Mar 18, 2013 04:40pm (EST)

I don't know . . . just trying to think of something catchy and humorous. So many things going on the last two weeks for us. It feels like Naethyn's angelversary just came and went. Urgh, just like his birth . . . the weather is of course the same here and that's just another reminder. I guess it's always going to be that way. Thank you Share friends for remembering my sweet baby boy on his very special day. Beyond my own immediate family, you are the only ones who recognize my pain and the love we will forever have for this little being whose life was cut short by so many unfortunate events. Some days and four years later, it's still too much to stomach.

With our teaching evaluations scheduled for the same day, we were just exhausted. We took the boys to a pizza place with games to celebrate N's angelversary. They had a good time, but when we got home, D looks up to the ceiling and says, "Happy Birthday Naethyn." Urgh, I lost it started crying, but I am so proud of D for caring and feeling that connection still. It was such a special bonding time for he and I when I was pregnant with Naethyn. I will always remember that special time.

We were going to buy a new vehicle after Naethyn was born. That decision has been put on hold for a long time. We didn't know if we should now buy a vehicle to seat our now family of four comfortably or buy bigger for the off chance that we might be able to add to. It didn't make any sense anymore. We put it off for financial reasons too, but ultimately, it is a step in the moving forward department and that can be a scary thing.

When we signed the papers for it last week and were listening to the spiel about warranties and extras, I turned and saw the most unexpected view. In the office next to us with an open door was a couple with a newborn in a car seat. I asked my father, who came along to make sure we didn't get pimped, to stand in the door frame. He turned to look and I could feel the tears starting to well up. I did good, deep breaths.

The boys love the new car and we do too. It's new and exciting and makes the garage smell fantastic. We've got a reliable vehicle now and that opens up a few other possibilities too.

Why doesn't any of this make me feel better?

Posted by lvazquez | Comments: (3) | Permalink

FRUSTRATED AND STRESSED OUT

Mar 05, 2013 05:38pm (EST)

I'm frustrated and stressed out. I'm now on BP meds to control pressures that were never this high with any of my three pregnancies. Scary! The school situation with Mr. T is the cause for most of it. We are regressing now and have so many additional behaviors. I had hoped for a bubbly personality Kinder teacher who would get on board with some outside training instead of nodding her head (doink, doink) to whatever "the team" told her to do. We've spent a lot of money this year on advocacy and it has helped greatly, but we can't afford to keep it up. I'm not spending my energy this way next year and I'm never going to be at a point where I can just turn my back and let the school do whatever they want with him, to him.

What to do?

I'm looking into a few programs at different schools not so close to home, but ultimately, I might be homeschooling next year. Take the money away from the school District and spend it on additional therapies. I might not be able to teach my super part-time job, but I know somehow we'll be okay. You know that feeling you get when you drop your kid off at a place you're not too happy with, that's how it is every morning. I thought those daycare feelings would go away once Mr. T started school, but they're still there. He requires so much attention and patience. He deserves the best that I can give and I feel like a horrible parent for sending him to a school that doesn't want him.

Today is hard as 3/5 and 3/6 are just sort of mushed together in Naethyn's angelversary. I know this particular time is making everything else feel even more difficult. I was supposed to be evaluated last week and it got postponed twice by administration. It's scheduled for tomorrow and while I so had every intention of being absent, I just want to be done. Chocolate, where's the chocolate?

Posted by lvazquez | Comments: (9) | Permalink

IEP #5

Feb 12, 2013 04:48pm (EST)

We are trying to get our next meeting scheduled. The District just drags it out. I think that we requested the IEE back on November 1st. Blah, blah, blah. I've promised myself that I will not spend my energy this way next school year. I could keep battling, but I know that my BPs are high enough and a change in procedures in unlikely without Due Process.

I did two things last week in an effort to help Mr. T in the future. The first is that I attended an Empowerment Scholarship meeting with the AZ Dept of Ed. This is a relatively new program in our State that if granted an award letter, a parent can use those funds toward a private school, private online school, or homeschool. Ideally, I want T around typical children. He needs help with socialization, but we can't seem to get "the team" to agree on what would be beneficial for T. We need a BCBA to come into the classroom, do a better FBA, put an effective BIP in place, and to model ABA for the classroom teacher and IA. It's going take moving heaven and Earth or $20K for that Due Process.

Second, I attended another Autism Conference this past Saturday. Lots of tables and booths to explore . . . therapies . . . private schools! There is one that looks dreamy, but their campus is more than an hour and a half away. Right now, that's not in the plans. They have a second campus opening soon in still a very far away city and there is some talk of a third campus closer in our area, but that won't be realized for another few years or so. What to do in the meantime? We have to get through the school year. Right now, my kiddo has some perfect attendance, but that doesn't mean he won't be missing the last 10 days of school.

Kindergarten has been a total waste! So many missed opportunities to model "expected" behaviors. His daily communication logs indicate the same old stuff and he isn't being given any consequences. They just don't know how to reach him. He's bored and he isn't being challenged or motivated. I'm exhausted at giving suggestions. The one I keep on them about, the team ignores. If anything, I guess I am surprised that with all the e-mails of upcoming trainings, the classroom teacher hasn't jumped on it! I mean, just to help yourself and gain some recert hours and be a bit more prepared for the next student with ASD who walks into your classroom. I HATE Kindergarten!

Well, I've already gotten into the box of chocolate I bought myself for Valentine's Day and I'd better hide the smaller ones I purchased as gifts for all of the in-home therapists. Chocolate is better than alcohol, I guess. On top of it all, that dreaded timeline is upon us . . .

Posted by lvazquez | Comments: (4) | Permalink

IEP #4

Jan 16, 2013 05:30pm (EST)

Okay, IEP meeting . . . it lasted a bit over 2 hours! I would have purchased some dinner or "something" for everyone if I knew we were going to go that long, but with the costs for the advocate, all I can do is buy after dinner mints at this point!

Okay, well, the District says we cannot determine OT eligibility services because the independent OT evaluator did not observe him in the classroom setting. Where was that info? It wasn't in the packet that was sent home. Oh yes, it was . . . #16 on the form, blah, blah, blah. So she's going to go in tomorrow, do her thing, and then we'll be setting another date shortly. Going to have to pay her to come out again and be present at our next mtg too, but she's EXCELLENT and knows her stuff. She made the District OT nervous. Worth the money to watch that right there!

1:1 aide? DENIED. They are not going to lift that LRE, so we are going to keep the supplemental IA that we currently have, but increase her time to 8 hours (?), map out his day, and show where we need that additional support. Funny, I thought we did this at our Kinder Trans. Mtg last May! We also got some goals rewritten, more specific. They use that generic program to write IEPs and nobody proof reads. It was productive and I'm happy about that. Some comments were made here and there that didn't sit well with me, but again, I'm dealing with people who don't really understand what this is like day in and day out.

The Resource Teacher might be going to observe a few other schools in their self-contained program with teachers who do have ABA and PRT techniques/training. I don't know why the District won't gather their Resource teachers and give them some training, but again, it's a budget thing. I can't force anyone to receive training, I can only suggest here and there. We are looking ahead to 1st Grade teachers and I made our choice known to the Principal. We would like to include this teacher at our last IEP mtg of the school year and allow T to become familiar with the classroom/area/restrooms. All of these things will help decrease his anxiety in August.

He's "probably" going to qualify for ESY, more info to come in the Spring, but he can't do both ESY and DDD summer program, so we'll have to make a choice. I'm thinking DDD because he was happy with that last year (familiar place). Mojitos to the rescue last night and maybe one too many because I so thought that I had T's backpack in the car this morning and mommy forgot it. Good thing we live close as I was back in a jiffy:) Office people just laugh at me as I run around, but hey, I bring them treats, so it's all good.

D was chosen as Star Student this week. We did finish the poster this morning and he's all ready to present it to his class. As T gets older, I'm so having D in on his younger brother's IEP meetings too. Big brother is going to have an even bigger role to play in the future. Sorry, but I just saw these classes involving signing rights over and for Estate Planning and it's kind of freaking me out!

Posted by lvazquez | Comments: (6) | Permalink

A NEW YEAR - 2013

Jan 06, 2013 06:18pm (EST)

Two weeks ago and right before Christmas, we had a garage sale. Yes, it was the GOOD baby stuff that I have been holding onto for almost 4 years now. There's the crib, crib mattress, matching dresser, exercauser, high chair, bouncer, bebe pod, 3-stage seat, bilingual Elmo potty chair, potty seat, wipe warmer, Serta changing mat, changing pads, baby toys, baby clothes, blankets, baby monitors and just so many other BABY items that it became all too overwhelming to be out there!

We were able to sell most of these things with the exception of the largest items. I was able to unload two huge Rubbermaid containers at one of those second-hand shops and I donated the items they wouldn't/couldn't accept. I still have a huge lot of shorts that I'll try to sell as a bundle as we inch closer to February. I have some of these items posted online and I was able to give some other things to our speech therapist's son. Over the years, I have given outfits (w/ tags on) intended for Naethyn to other people who were also expecting little baby boys. This made me feel good, I guess. What is one supposed to do with all of this stuff?

I have been annoyed at seeing all of these things in and around the house. In light of the reversal situation, it just doesn't look good for us and at this point, it's doubtful that we'll attempt the IVF route. I'm okay. At least, that's what I tell myself. There is always going to be this missing piece that no amount of goodness will ever replace. Days leading up to Santa were hard. They have been ever since we gained an angel. Found out we were expecting another boy in mid-December that year. Dreaded timeline starts yet again.

Again, all the while maintaining focus on these two other precious lives that we are so fortunate to have. Mr. T has been so relaxed these past two weeks. We're hearing more words and sentences, original thoughts, less echolalia and it's been wonderful! His anxiety is low right now, but I have been spending today interjecting reminders that we will be going to school tomorrow. He knows what that means and all that it entails. I hate it. It has to get better or I'm going to need a prescription or a giftcard to Bevmo! Seriously, preparing for another IEP mtg in another week here. He needs a 1:1 aide for the entire school day. I have so much more documention of December incidents where the teacher dropped the ball. At least it will be fun to listen to the excuses. Yes, I've become "that" parent and you know, I'm okay. If it gets my kid the appropriate help that he needs and is supposed be receiving, then I'm fine with "that" label.

I took D with me to do some damage with some giftcards. I don't want him to think that he'll always get something when he goes out with mom though. That's a hard one. He got some shirts and some new shoes for the Spring semester. He's excited to wake up to his Star Wars alarm clock. D got Darth and T has Yoda!

Well, another year of hopefully new and good things. We were pretty productive last year with services and training. Now, we just need to finalize a bit more in that area and work smarter, not harder. Heading into another RIF situation, so the idea of returning to full-time teaching in another District is on the horizon. We'll see . . .

Here is a pic of the boys in their new pajamas waiting for Santa:)

Happy New Year everyone!

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Posted by lvazquez | Comments: (5) | Permalink

REVERSAL UPDATE

Dec 14, 2012 05:18pm (EST)

Okay. Um, last Friday was rough. I cried a bit in the morning and just like I did in April '09 when I allowed the sun to start slowly shining again in my life, had a conversation with myself. This is not what I wanted, but I can't let it control the rest of my life. So many people depend on me to be okay. I have to let go, but I just don't know how . . .

Last Friday morning, I was checking e-mail. It was the out-of-state tube reversal center telling me to please call as the doctor had some concerns about my particular situation. Now, here's the deal people: I scheduled surgery, I already paid for the surgery, booked/paid for my flights, reserved a hotel, arranged care for kiddos, and went to numerous appts with family practitioner and hematologist, and filled prescriptions. I've probably had six appts. in the last three weeks which for me is A LOT. I had already spoken to the anesthesiologist and everything. One would "assume" that the doctor had already looked at my file. I mean, I started doing labs back in October! I don't know if he had second thoughts or what, but in a nutshell, they are canceling my surgery. I am too high-risk to have it done at the center. It has to be done in a hospital setting. Makes sense, but to cancel surgery 20 days before?!

I was in shock for a few minutes on the phone while I realized I wouldn't be flying afterall. I've been thinking positive and slowly allowing myself to start dreaming again. I've been soooo good. Even lost another 8 pounds and working toward 5 more before the surgery. Okay. Now, as I'm trying to process all of this, I am also wondering now about REFUNDS. The doctor wrote me a letter and that is enabling us to get full refunds on our airfare, but it's going to take 45 days. They are giving me a full refund on my surgery/scheduling fees and I'm so hoping that all gets posted back to my card next week as they've assured me it will.

The cost involved with this procedure was large already and I'm very familiar with the in-hospital expense as we got an estimate in the summer of '09 to do this in-state. Trouble is, I don't trust that local guy and I don't want someone who dabbles in IVF and tube reversal. Plus, I could barely undestand the guy and I do accents for a living! I wanted the people who have performed the most in the world and who have a very high success rate. There is still a chance, IVF. We explored this in AZ and in CA to compare centers and information back in '09 when we were feeling very desperate and bargaining. I still feel a bit desperate and I'm obviously still bargaining. Grief process kicks me in the derriere again . . .

Posted by lvazquez | Comments: (11) | Permalink

OUR 32-WEEKER IS NOW 7 YEARS OLD

Dec 07, 2012 04:36pm (EST)

Seriously? Where did the time go? It feels like this little being just came into the world. This little guy is such a wonderful boy! He's so good, sweet, and cute that we wanted another and another. Donovyn has his limits, but overall, he's one patient little boy especially when it comes to Mr. T. When I think about ALL that D has been through: his early birth, an angel brother, and now a sibling of a child with autism. Um, that's A LOT and I don't think most adults would handle that well. He's AMAZING and I am learning so much from each of my kids everyday.

For his 7th birthday, he got his day off! The 21st was a school holiday! He was born on a Monday back in 2005 the week of Thanksgiving. We sort of thought his b-day would eventually land on a holiday. We had a lot to be thankful for that year for sure and every year since. He brought in cupcakes for his classmates that Tuesday and ate 'em right after lunch. This year, he wanted a little party at Chuck E. Cheese's with his best friend J. We went crazy with the tokens and the boys had a good time! D was really wanting a Megazord or something and his friend came through. He was happy with his array of Pokemon stuff and Transformers from us, but the Mega thingy was "the gift" on his b-day wish list this year.

I love this time of year. My fellow Scorpion son recently told me the same thing. Love that, love him!

Donovyn Homecoming

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Posted by lvazquez | Comments: (5) | Permalink

HEMATOLOGIST

Nov 18, 2012 04:13pm (EST)

Some of you know that I have been struggling with the circumstances surrounding the loss of our son more than 3.5 years ago now. Some of you might recall that I drove myself to the hospital alone, shaking, leaking, bleeding and totally on survival mode. I was not in the right frame of mind to be making even more life-altering decisions, but what was done was done and I had a tubal ligation. Even as the mask was going over my face, I had regrets. I wanted to cry out, but my throat was dry and I could no longer speak. I've had regrets about this decision ever since . . .

I've been researching and contemplating tube reversal surgery for years and now I am one step closer to the procedure. I never intended for tubal ligation to be a temporary fix to birth control. I could have never imagined "this" life for ourselves, but here we are wanting and waiting for one more chance. I've been talking with a center for more than two years now and visiting a hematologist is the last check on our list. I've been dreading this appointment. I've delayed it for so many reasons. I told myself that I would not go searching for another hematologist to hear the words I wanted to hear. I would accept what came and move forward without regret. To my surprise this past week, I didn't hear "no," but a "yes" with a careful post-op plan in place.

This is not covered by our insurance. We've been so very careful to save our pennies. There are no guarantees. I know this all too well. This is one of many, many steps of a very diffferent kind of journey. I know that despite the outcome of surgery, I will be able to move forward to the next phase of our lives. I owe that to myself, my husband, to my living children, and to our angel son. I have given myself A LOT of time to consider the risks, the possible outcomes, EVERYTHING, and I'm ready to face the unknown with open arms.

Posted by lvazquez | Comments: (8) | Permalink

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