Wednesday, November 28, 2012

Be the advocate your child deserves.

When I was in fifth grade, I began the year with a team of really bad teachers. In fact, when I stumbled on a multiplication fact, in front of the entire class, my teacher told me I wouldn't "learn math until the cows came home." How disheartening and embarrassing to hear something like that. From then on, I sat through math classes pleading (in my mind) with the teacher not to call on me to answer a question in front of the class. My mom fought to have me removed from that class. I'm sure she met with the teachers and the principals more times than I know about, but ultimately, she told the principal that if I wasn't removed from that team of teachers, she would pull me out of school and home school me for the rest of the year. I was moved to a different team, and the rest of fifth grade went well, or at least as I remember it.

My mom taught us the importance of advocating for your child. I have been tried and tested in this department of parenting since the moment Isaac was born. It's pretty simple. Here is a little person whom you love with all of your heart and soul, who has no voice or power of words with which to express their needs, and you fight for them. You are your child's voice. With that comes great responsibility. If you feel that something is wrong, and the people who need to listen aren't listening, find someone who will! I've been Isaac's voice, and I've been Isabella's at times, but she hasn't required nearly as much fighting for.

When Isaac was placed on my chest for the very first time, we knew nothing other than the fact that his head was misshapen. We had no idea what a roller coaster ride we were in for. Now, I think back to all of the testing he went through. Much of it very uncomfortable. I think of lying on an exam table pleading with him to nurse so that we would make it through whatever test he was enduring. Sweating. I remember sweating, as I held him so many times as he cried and cried at the doctor's office. Most of the tests were to determine why he was so constipated all the time. And every one of them came back normal. Which was great, but trust me, when you're searching, you want to find an answer.

When we did finally find the answer, and found out that this would be something he would carry with him his entire life, it was so hard. But then pretty much everything we'd been through was explained. And I finally knew my mission. That's pretty simple too (in writing at least), do everything possible to give him the chance to succeed. That's my mission. That is the reason we have multiple appointments each week; that is the reason I push him to respond with a sign or a sound; that is the reason why he has to have time-outs just like any other kid; that is the reason I talk to him just like I always talk to Isabella; that is the reason he isn't just on formula 24/7 (more on a blended diet in another post).

I will be very honest with you. If you are the parent of a child with special needs, you can't sit back and watch the show. Nothing will happen if you do that. The services for your child, don't just line up at the door. Ask questions, do your research, talk to other parents, and stay informed. Before you go to an important appointment, spend some time writing down questions, or things you need to share with that particular doctor. Use that time as wisely as you can. My recommendation, make a medical binder with tabs for each physician where you can keep any information given to you by that doctor. Make sure you have each physician's business card taped to the inside of the binder. I also keep a list of Isaac's recent words/sounds, and signs, that way, if anyone asks I'm not sitting there trying to remember everything, I just hand them the paper. If your child is on a blenderized diet and you have an upcoming GI appointment, keep track of what they are getting through the tube for a week (calories, proteins, fats, etc.) that way you can account for their diet. Trust me, people tend to get weird when you choose the road less traveled. Take video clips of your child meeting certain therapy goals, so that you can show what you are working on at home.

Most importantly, be upfront with the doctors in your life. Just tell them, "this is what I feel is important for my child, what do you suggest, and how can we work on this together." When I met with Isaac's new ENT, I told him upfront, I'm not leaving today without scheduling a tonsillectomy. I guess at that time I wasn't really suggesting we work on anything together. But my point is, I knew that was the next step, and look at the vast improvements it has made to have his tonsils out.

Trust me, I'm not trying to say I'm perfect, I've just found a method to this madness that works for us, and I would like to encourage you to do the same for your child.

 Good Morning!

I love her eye lashes.

Stella is wearing her cone again. Don't worry, Grandma, she's fine, just some itchy skin issues going on. As you can see, she is well cared for by her little doctors.

How about a stuffed animal, Stella?

Or two?

"I see you, Charlotte!"

Isabella, reading to Isaac while I finished getting ready for our morning of therapy appointments.

Using an iPad at Speech Therapy.

The idea behind this post came from the most amazing compliment I received from Isaac's feeding therapist. She and I have had differing opinions on many occasions  and I've recently decided to stop feeding therapy and start a different feeding approach with his OT. But she said that if she were a child in Isaac's situation, she would want me for a mom, because if something isn't working, I don't continue doing it anyway, I move on and find a new way to approach it. Hearing that, means the world to me. We've been on quite the journey over the past two and a half years, and I know many of you reading this have a child with special needs, and you have been on a similar journey or even a harder, more complex journey, with your child. Just remember, you're doing a great job, and you're doing everything you possibly can.

Stay strong,


Tuesday, November 27, 2012


Walter and I spend a fair amount of time making fun of the shows my brother and sister get so invested in, and then inevitably, we end up copying them and start watching the same show. It has happened with Mad Men, Damages, and now Nikita

Nikita is amazing. I'm not kidding, you should watch her. If only I could simultaneously break someone's neck with my legs while climbing on their back and shoot a different person. Nikita says things like: 

Michael, let me know when it's clear. I'm going to run over there and scale that wall. Sounds like a plan. Even though that wall is as smooth as a piece of paper and you have nothing but your two bare hands to do it with. 

Be ready to randevu in one hour. Randevu is our new favorite word, and we use it often.

After watching Nikita for a few weeks, I suggested to Walter that he and I take some martial arts classes together. You know, a good bonding experience for us, and a fun way to spend time together. Or so I thought. Walter didn't think it was a good idea, so I attempted reverse psychology: You can pick, martial arts, or ballroom dancing. I thought surely the mere idea of taking a dance class would make up his mind. Nope. My tricks didn't work. Instead, we bond over our nightly viewing of Nikita as she plans to take down Division and hunt down all of the black boxes. 

Oh my goodness! Blogger keeps putting my pictures out of order and it is so annoying! Oh well, I'm sure you don't care. 

Meet Lucy, my parent's new dog. I have heard her name and everything about her approximately 300 million trillion bazillion times. Isabella is in love.

Here is Isaac, who has been torturing us for over a week. I do feel bad for him, he has a terrible cough that the doctor wouldn't do anything about and we have not slept in a very long time. This morning I was sure a truck ran me over last night. And unlike Nikita, I didn't bounce up off the pavement with my super tight pants and high boots on, ready to give this day a run for its money. I'll save that for another day.

Blah Blah Blah, yes, I've tried to give him some homeopathic cough medicine. Please, come over to my house if you think you can charm him into believing that any substance coming near his lips is not the kiss of death.

A Thanksgiving Day walk with just my girl (and Lucy)...

This is a classic Isaac picture. I love it. It's him, captured at the perfect moment. Tongue, and dainty fingers, and sideways glance. Perfect.

Coloring faces on acorns...

We're bonding.

Some good news! There are grants out there that will often supply an iPad to children with disabilities. I applied to one and wrote a long letter all about Isaac, and they called me the day before Thanksgiving to let me know that Isaac is one of the recipients. We are so excited and grateful for the opportunity to help Isaac communicate more effectively. I'll let you know when we get it, and all about the process. 

Also, if you are parent and have school-age children, or soon-to-be school-age children, you must read this book: The Good School: How Smart Parents Get Their Kids the Education They Deserve by Peg Tyre. Seriously, buy it today. It is mind boggling and an eye opener to what is going wrong in our schools (public, private, or charter, it doesn't matter, there are questions you need to ask). This is also a great resource if you are homeschooling. She writes about what you need to watch for in areas like Reading and Math and how they should be approached in order to offer the most success. Is your child not doing well with reading? Read this book! Is your child getting a dumbed-down math education and you're worried they may never succeed in Algebra? Read this book! Okay, I'm done. 

Friday, November 23, 2012

Duck, Duck, GOOSE!

Isabella suggested we play Duck, Duck, Goose, I had to tell her that we needed a few more people than the two of us to play. I suggested Red-light, Green-light which she happily agreed to. It's amazing the things that make kids laugh. I simply stood by the living-room window and she stood in the dining-room and I yelled out "red-light!"..."green-light!" and she thought it was hilarious. Isaac...not so much. He's been in a particularly bad mood this week (he has a pretty bad cold), so instead of joining in, he walked around in a sad circle and cried. Maybe he just really wanted to play Duck, Duck, Goose? Who knows.

Speaking of ducks, I grew up with what my family lovingly calls, The Duck Blanket. Last Sunday I saw that my mom had place my duck blanket in the dog crate. I mean really, the nerve! It is now safely at home with me, don't worry. Anyway, when we were little my sister and I spent hours playing cars on the duck blanket. I mean, hours. My sister says this was her fondest childhood memory. I would have to agree. The morning after we brought it home from my parent's house, I excitedly announced to Isaac and Isabella, "Hey guys! Let's play cars!" We had fun until Isaac decided that no one but he and I could touch the blanket. This meant that any time Isabella touched the blanket he would start flapping his arms and cry. We put away the duck blanket. But I do hope they have as much fun playing cars as my sister and I did.

I found a Thanksgiving activity on Pinterest where she went on a "Journey to the New World" by picking up these various cards and we read them and answered the discussion questions. She had fun with it but honestly, I think Charlie Brown did a better job explaining Thanksgiving than I did. 

I am at my parent's house as I write this, so I don't have Isabella's list of things she is thankful for. The things that I can remember off the top of my head are:
mommy and daddy
that everyone is different

Isaac made a list too. His list included (or I would assume)...
feeding tubes
mommy and daddy, but mostly mommy
sign language
the Wii

Isabella is on the verge of catching the cold that Isaac has. Thankfully she can blow her nose and I don't have to sneak up behind her and jam a tissue on her face and quickly swipe it away as she screams. During Isaac's nap on Tuesday, we read two chapters of Ramona the Pest. Isabella began pointing to words that she knew, and I told her that she could probably sound out many of the words in the book. Apparently she was under the impression that she wouldn't be able to read chapter books until after I "pass away". I certainly hope she's reading chapter books before then.

I hope you and your family had a wonderful Thanksgiving. Isaac enjoyed (or at least I think he did) a turkey dinner via his feeding tube. In case you were wondering, I am not shopping today. When I was talking to Sarah on the phone earlier, she thought I said that I was going shopping, and said that if I did, I would surely end up in a mental institution by the end of the day. She knows me too well.

Sunday, November 18, 2012


Are you running low on snot? Isaac would be happy to share some of his. He's not feeling well, and when Isaac isn't feeling well, we all pay the price. Walter and I have been trading time laying in bed with Isaac and reading books to him. Of course we went over to my parent's house and he played for the first time since Friday. Kids, they make us out to be liars.

Last week felt long and tedious, hence my first post in several days.

Isaac wanted me to open a "na" (banana) for him. I dared him to take a bite. He preferred waving it around. You've probably noticed that Isaac spends a fair amount of time sitting on our kitchen counter. That's his happy place if I actually want to accomplish anything in the kitchen.

Wednesday we had his Craniofacial Team appointment. Isaac was amazing during the three hours we were in this room. Unfortunately, nothing productive came of the appointment. The ENT did call yesterday, and said we may push up the date for orthodontics (who knows when. I'm sure it will still be a few years.) and we will probably try a CPAP for sleep.

Practicing running...

Also, we got Isaac's orthotics, which is a drawn out drama that I'll try not to complain about too much. Finding shoes to fit these darn things in was nearly impossible. Isaac refuses to stand while wearing them, and until Friday, refused to even scoot while wearing them. This is especially frustrating because he just started walking and I feel like we are going to go backward until he gets used to them. I think we'll just take it slowly, and still enjoy the fact that he is walking, but hopefully get enough use out of them before his foot grows and he has to be casted again for a new pair.

Isabella has been the best big sister. She cheers for Isaac when he has his braces on, and tells him how cool he is. He has yet to agree with her.

We have so much to look forward to this week! My grandma is coming for Thanksgiving, and my brother is coming home from college, and my parents are getting their new dog. It should be a great week! Next time, I'll share Isabella's list of things she is thankful for.



Wednesday, November 14, 2012

Homeschooling, and why we do it...

If someone would have told me five years ago that I would home school my daughter, I would have laughed in their face. I have many friends who home school their children, and I just assumed they were born with an extra dose each of patience, love, organization, and desire to spend all day, every day, with their kids. I was pretty sure I wasn't one of those people. And for the record, I'm not saying that I am. 

When a friend asked me what I was going to do when Isabella started preschool, I quickly responded, "sit at Starbucks and read a book." Get them in the nest and then kick them out as soon as they are age appropriate, right? 

Well, I've changed my tune (a bit), and I know some people disagree with homeschooling, and some people think I'm just plain crazy, and some people are fully supportive of the idea. 

The idea to home school Isabella came about when my husband and I couldn't agree on what to do about schooling. He is pro-private, I'm pro-public (for the most part), our bank account is we looked into homeschooling, found a curriculum that we both like, and there you have it. I also felt like full-day Kindergarten for a five year old was a little extreme. On top of that, I felt like the past two years have been devoted to Isaac, and that I'd lost the fun that Isabella and I used to have together, and I wasn't ready for her to be gone all day. 

Homeschooling definitely has its challenges. We are with each other all day and Isabella tends to talk all day and I don't like to talk very much, so that can make some days harder than others depending on my patience. We're also working on dealing with Isabella's lovely "I'm five and want to be fifteen" attitude, and lately we've been able to respond in a calm way, send her to her room, and she can come out when she is ready to apologize and change her attitude. (I can't say we responded calmly as of a couple weeks ago). But overall, we really enjoy homeschooling and spending the day together, and we feel it is working out well for our family. Isabella is learning a ton and I get to be a part of each step. At times I worry that she is missing out on the "school experience", but then I remind myself of all of the other things she would miss out on if she were at school all day. This experience is tailored to fit her needs and interests and I think that is pretty cool. I thought I would be really strict and stick to a rigid daily schedule, but trust me, if my kids are playing happily and engaged in what they're doing, phonics can wait. No one will die if we do it an hour later than planned. If she is struggling to remember an addition fact, we just spend a few extra days focusing on that, and work with teddy bear counters and find ways to make it interesting. 

Yes, we do follow a curriculum and you can find what we use here. We have really enjoyed this program and feel that it covers all the bases, and plan to stick with it next year, for first grade. This is a Christian based program. That was important to us, and it is also the same curriculum that a local homeschooling program (2 day/week at a school) uses that we are looking into having her attend in the future. 

What about socialization? Aren't you afraid she'll be really weird? Well, judging by the hours each day that she spends talking to herself, she'll probably be weird. Just kidding! Socialization is the least of my concerns. I mean, come on people, we see people every single day. She has story-time two days each week, playgroup, ballet, indoor soccer, play dates, Sunday School, etc. If we lived deep in the woods with boarded up windows, and avoided all human contact, well, then I could guarantee she'd end up being weird.

What about Isaac? What does he do while you work on lessons? Isaac is usually sitting with us. Depending on the day, he is the class clown or, the class tormentor. If he is having a particularly crabby day and I can't distract him with anything in sight, he watches a show. Lately though, we've tried to have our school time during nap time, and that has worked out really well. Next year, Isaac will be in preschool four mornings each week, and the plan is to get everything done while he is at school. 

You would probably be surprised by the number of people homeschooling these days. We meet new people each week who are homeschooling, and their reasons span all across the board. 

We're taking this year by year, and when it no longer works for us, that's when we'll make a change. 

It looks like I'm choking Stella, but I promise she's enjoying this embrace.

 Bible time

Making a birthday card for my mom

Watching The Muppets after a disastrous lunch and grocery outing (Isaac believes all restaurants are plotting against him and the perfect time to start screaming is when the food comes to the table. Especially if it is a really small, quiet restaurant, where everyone can stare at you angrily while you scream.)