Saturday, February 14, 2009

Do You or One of Your Children Have a Disability?

Little Guy went to get his hearing aids adjusted yesterday, and we had a great time visiting with Dr. Michele and Deana. (The King was home, so I got to go with just Little Guy and me. That NEVER happens.) Deana has a wonderful daughter named Ashton, who is 17 years old and hard of hearing.

Ashton is working on a community outreach project to help bring more knowledge of disabilities to the public. This is not limited to only hearing loss awareness, but to any and all disabilities. She asked that I fill out this survey, and pass it on to anyone I know who would qualify to fill it out. To qualify, you just need to have some special need of your own, or be the parent of someone who does.

So, will you help a girl out? Will you fill out Ashton's survey? She will be using it to create charts and presentations for a community event at which tables will be set up and information will be shared. She'll even be including activities for younger children to get a feel for what it feels like to live with various special needs.

Just copy and paste the survey into a microsoft word document, fill it out, and e-mail it to me at I'll pass it on to Ashton right away. You don't have to add your name if you don't want to.

Thanks for your help!!!

Defining Differences
This can be completed by a parent / guardian. If this is for a child that is very young, the parent / guardian can fill out the information from their prospective.

Individual’s prospective ______
Parent / Guardian’s prospective _____

In what way are you (or your child) different?

Is the difference because of a disability? If so, please indicate what your disability is? Do you feel this is a visible disability or invisible disability? Why?

How has that helped define the person you are?

What would you want others to know about you and / or your disability?

What are some challenges that you faced that you have overcome or found organizations / or others to help you overcome that you would like others to be aware of? This could be a link on the internet, organization, professional, program, civic organization, etc.

Please indicate the age of individual that has disability? (Optional)

Sunday, February 8, 2009

Wanna' Win a Prize?

Well, I don't know how much of a prize it is, but the winner will get a shout out from me right here on my other blog. I know. I'm no Paris Hilton or the Pope or anything. But, I'm still fun and exciting, right?

So, here's the contest. Feed me. That simple. I'm on a pretty strict diet because of Little Guy's reflux. We have pulled wheat, dairy, corn, and nuts from my diet. I'm also cutting out gassy foods like beans and broccolli. On top of that, Number One is very allergic to peanuts and eggs. So, I'm hungry. I'm living mostly on M&M's, Andes Candies, raisins, craisins, and prunes. Oh! And rice crispy treats. The good news is that my bowels are very regular. The bad news is that I'm feelin' kinda' hungry.

Sooooo, do you think you have some great recipe? I'm going to commit to try one new recipe a week that is safe for all of us. Where will these recipes come from? YOU!!! I know you people are great cooks, right? If I pick your recipe, I'll post pictures of us eating it as well as the recipe for others to try. And YOU get all the credit. There will be extra credit for anyone who can find a way to sneak veggies into the recipe so the kids will eat it OR for coming up with a sweet dessert. I have such a sweet tooth and raisins are just not cutting it.

This week's winner comes from my good friend, Mindy. She sent me a recipe for Spanish Rice Casserole and it was a total hit with the whole family. I doubled the recipe and have only enough left over for Number One to take to lunch tomorrow. That says a lot. And I already have the King asking when I'll make it again. I did take pictures of the finished product, but will have to post them tomorrow when I can get to the other computer. Here is the recipe:

Spanish Rice Casseole

1 cup pitted ripe olives
1 pound lean ground beef
½ cup chopped onion [or reconstituted dry onions]
1 cup sliced celery [or celery seed/salt]
¼ cup chopped green pepper [or small can mild green chilis]
1 cup raw rice (not instant)
2 ½ cups canned chopped tomatoes
1 cup water
A dash of salt, or omit salt
1 chicken bouillon cube or ½ tsp. chicken flavor base (make sure gluten-free)
2 or 3 teaspoons chili powder
¼ teaspoon freshly ground black pepper
Cut olives into large slices. Brown the beef in the oil in a pot. Add the onion, celery, and green pepper or chilis. Cook, stirring, until browned. Stir in the rice, then add the tomatoes, water, seasonings, and olives. Bring to a boil, then cover, turn down to low heat and simmer for 20 minutes or so until rice is cooked and liquid is absorbed. Stir, then serve.

I made it with fresh celery and green peppers and put in only 2 tsp. of chili pepper even though I doubled the recipe. (We're spice wimps). The other thing I did which was a HUGE hit was to load it with cheddar cheese after taking my portion out. They couldn't get enough of it!!!
Thanks for the recipe, Mindy! I ate very well tonight all thanks to you.

For those who want to enter this very high profile contest, you can e-mail me at with your recipe or you can post your recipe in the comment section of this post. I can't wait for you all to fill my belly!

Saturday, February 7, 2009

We're Going National!

I've known about this for a while, and have been meaning to post about it. Somehow, though, I got so busy with just living life that I never did post it. I have a few minutes right now while my children are quietly plotting to take over the world. Given the choice between showering alone and posting about the National EHDI Convention, I chose to post. I can shower sometime next week right before I bail the kids out of jail, right?

For those who are unsure what EHDI stands for, it's Early Hearing Detection and Intervention. It's a topic which is close to my heart because I have two children who are prime examples of the benefits of early detection of hearing loss. I believe in it so much that I sit on the Texas Deaf and Hard of Hearing Leadership Council: Birth to Three. I also spend what free time I do have working to educate pre-school teachers and anyone involved with young children about ECI, early hearing loss detection, and anything else which falls into that arena. And I LOVE it!!! It's my personal form of therapy. For me, it gives my sons' hearing loss purpose.

This year, the national EHDI convention will be hosted near us!!! This is a HUGE deal. Professionals from several arenas all which interface with families of young children with hearing loss will be there. Pediatricians, audiologists, oralists, Deaf cultural leaders, teachers, and early intervention specialists will all be in attendance. The really exciting part?? The King and I will be speaking there, too!!! Finally, I feel like I have a chance to share my knowledge with people who can actually do something about it.

We will be part of a panel discussion about parent driven early intervention resources. We've pulled together the team of people who worked with us and the Beast to reach the goals we set for him, and will creating a program to instruct others on how to help empower parents to take charge of the children's services. We'll be discussing inter-agency networking, problem solving, and thinking outside the box to meet the needs of the individual child and family.

For those interested in this convention, it's not too late to register. We are really excited to be attending, and look forward to being able to return and report.

Wednesday, February 4, 2009


Little Guy had his ECI intake evaluation and IFSP (Individual Family Service Plan) yesterday. I'd been gearing up for it for a while, and working on preparing myself for all the work that would lie ahead. I knew I had a lot going for me because I already knew the team that would be set up for him, with the exception of a new itinerant deaf ed. teacher. But, just the thought of all the hours and hours of work was weighing heavily on my mind.

Before they came, I started practicing what I knew I needed to say. I had to practice it because what I was going to say to them is entirely out of character for me. That said, I knew the fact was that I needed to say it.

Finally, the time came and they all showed up. Ms. Francis from the school district was there. She's been the Beast's Deaf education teacher since he was 11 months old. She won't be Little Guy's teacher, but the teacher assigned to him was out sick. I was okay with that. The familiarity of having Ms. Francis there was actually really helpful and relaxing. Snort's nutritionist had already done her evaluation, so she wasn't in attendance. Snort's occupational therapist was there. Pretty's speech therapist was there, too. Lastly, Jo was there. Jo is a really special person to our family. She was the Service Coordinator for the Beast starting from when he was about 11 weeks old. She oversees all of Pretty and Snort's services, and will be taking charge of everything for Little Guy, too. She is making other plans for her life and may not be with ECI for much longer. But, I really do believe God put her in our path at this time for a reason. I really needed it to be her who helps me find my wings and fly, and I think she'll do just that before leaving.

The evaluation began and there were papers and questions flying everywhere. Teresa (OT) assessed his motor skills. Right on target! (Not that you can be too horribly delayed when you're only five weeks old, but that's okay). Jan (speech) did her assessment, too. Again, right on target for five weeks old. Ms. Francis was the last to do her testing/questioning. All were pleased to announce that, for now, he's right on target.

After the assessments were done, it was time to move into the IFSP portion of the meeting. At this point, Jo turned to me and said, "What do you see as your family and Little Guy's needs from us?" I could feel myself sweating and my heart racing just a little bit. I was almost fighting off tears at what I was about to say. I looked her and every other person in the room straight in the eye and was brutally honest. "I need this to be as minimal as possible. I usually handle stress so well, but I'm not handling it so well right now. Between Little Guy's reflux and RSV, and Snort's horrible asthma attacks, and all the doctor appointments, and the Beast's hearing issues and behavior at school, and anything else you can think of, I'm spread too thin. And I'm going to snap if I haven't already. So, I need to keep his services to a minimum."

There! I'd said it. And I felt better for having said it. I know that none of that sounds like anything out of this world. But, those of you who really know me also know that I usually will just pile it all on whether I have time for it or not. I would normally set him up for OT services monthly, speech almost monthly, service coordination weekly, Deaf ed. weekly, and anything else that was suggested. So, for me, this was a huge thing to say. Jo gave me a knowing look, almost relieved. She knows me well, and I think she probably agreed that I was at some kind of breaking point.

So, we went from person to person and decided what level and frequency of services would be needed. Jan comes to see Pretty twice monthly. She promised me she'd observe Little Guy while she's here and let me know if he's falling behind. So, he will have one scheduled visit from her in the next six months. Teresa comes to see Snort once monthly. She also promised to observe Little Guy while she's here and offer tips to help him out and to let me know if he's falling behind. She also is scheduled to meet with Little Guy once in the next six months. Suzanne (Snort's nutritionist) sees Snort once monthly, too. I'm not sure we set up how frequently she'll see Little Guy, but it will be minimal as well. Jo sees Pretty once a month and she sees Snort once a month. So, we set her up to work with Little Guy once a month, too. She didn't have to promise to tell me if he's falling behind because I've worked with her before. I have a perfect knowledge of the fact that she always lovingly speaks up when one of her children needs something. Lastly, we discussed services from our itinerant Deaf ed. teacher. She will be coming once a week. Again, I was proud of myself because I said in no uncertain terms "I need her to come with information that will help us. I don't need to be taught what a hearing aid is, or what a cochlear implant is, or the difference between Deaf, deaf, and Hard of Hearing. I need her to help teach Snort and Pretty about Little Guy's first language (ASL will be his first language. Speech will come eventually, but communication needs to come as soon as possible). I need her to give me a sign language refresher course, too". Ms. Francis nodded in agreement, and that was it.

The last portion of the IFSP is the part where the service coordinator asks what the family needs in order to meet all the needs of the child in question. Jo, being the by-the-book SC that she is, asked this question. My answer was plain and simple: "I need things to feel normal. It doesn't need to be normal to the rest of the world's standards, but I need things to feel normal for our family". Jo knew just what I meant without saying another word. I have every ounce of faith that things will feel normal again soon.

I created this blog in an effort to share our experiences with other parents who are just starting the journey with their own children. Having been there and done that once before, I felt like I'd have a lot to offer in terms of experience and understanding. But, I'm realizing that I am often learning many things for the first time, too. I've always known that ECI services are all about meeting the needs of the child and the family and about empowering parents to be adovocates for their child. What I learned this week is that ECI is also about empowering me to advocate for myself. After all, I will be the greatest teacher my child ever learns from. If I allow myself to become overextended and somehow "broken", I won't be all that affective of a teacher, will I?

Tuesday, February 3, 2009

Well, It's Good to Know I'm Not Completely Crazy

The Beast has always been kind of a handful. He is brilliant beyond brilliant, but in a weird way. So, comes across as a little eccentric. Part of that is the sensory integration issues he has which stem from his hearing loss. Some of it is just a high intellect combined with a delay in social skills. No matter how you slice and dice it, though, he's a delightful little boy. He loves life and just tries to soak it all in all the time.

Some people really "get" him. His teacher is one of those people. She sees him for what he is, and lovees him for it. She doesn't let him get away with much and she doesn't let him know when his efforts to drive her nuts are working. She's AMAZING with him. I appreciate all the hard work she puts in with him. I'm confident there are days she goes home and makes herself a very strong drink after having spent the whole morning and afternoon with him.

If she were the only one who associated with him all day long, life for everyone would be simple and good. But, she's not the only one. He also has to work with classroom aids who don't "get" him, a bus driver who thinks he talks too much, and the list goes on. So, some days aren't as good as others. And those are the days I want to beat my head into a brick wall.

I've already posted about the bus incident. What I didn't add is that he's been getting into a lot of trouble at school lately. A lot. I was getting lots of reports of "I know he hears me, but he's just trying to get attention" or "He's choosing not to do what he needs to do" or "His voice is really loud and disruptive". I try not to let it get to me, but it does. It breaks my heart sometimes that there are people who don't appreciate his vivaciousness. Luckily, his teacher also gives reports of "I don't know how well he's really hearing" or "He's talking so loud that I just have to wonder about his hearing", etc.

Anyway, I had made him a hearing appt. for today, but was just not sure it would give many answers to explain his recent behavior. The poor kid hadn't had one full week of good reports in a month, and I was pulling my hair out and finding myself in tears over it all. the. time. Today was the hearing test.

To my delight, we found that his right ear (the one with the cochlear implant) has lost about 30db. Why is this good? Because it means there was a reason for his behavior. I'm NOT crazy!!! My child is NOT some bad seed destined for prison before he gets to Kindergarten. There is a reason behind his behavior. (I mean, in addition to the fact that he's slightly off his rocker. *giggle*)

Anyway, his implant ear had deteriorated so much that his aided ear was better. He was starting to depend on his hearing aid instead of his processor. The aided ear isn't that great to begin with, so he was missing a whole lot of sound throughout his day. So, he got bored and started acting out.

I'm pleased to say that the processor has now been re-programmed, and he should be back to his old naturally whacky self in no time. I'm so relieved. And I'm glad to know I'm not totally nuts. I'm just a mom who really knows my kid.

Little Guy's Blessing Day

Little Guy was blessed on Sunday. It was a chaotic day for me, but I'm so glad I stuck to my guns and had it done. The night before, the Beast was up from 1am until about 5:30. The dog woke up, Number One woke up, Snort woke up. Everyone decided that Saturday night was a great night to become nocturnal. So, I was very tired and adequately grumpy.

The King had a meeting that morning, so it fell on my shoulders to get all five kids up, fed, bathed, dressed, and out the door in time for church. I did it!!! And it felt great!!!

I debated not having him wear his hearing aids for his blessing. But, in the end, my heart told me he needed them. It was a little hard to swallow my pride, and have him wear them, but I'm glad I did. Just look at how beautiful he is!!!

His blessing was beautiful. I couldn't have asked for more perfect words to be said. Anyway, here are the pictures.