Update

I don't think I've ever abandoned my blog for three weeks, but such is life. Life has been busy and I haven't been getting enough sleep, thanks to my charming three year old who does not believe sleep is important, but I am constantly reminding myself that our daily (and nightly) life is so much better than it ever has been, so I can survive this as well. 

I am going to offer a quick update and a bunch of pictures before resuming a (somewhat) regular blogging schedule. I know my Grandma and my siblings will be very grateful.  

Isaac continues to love preschool and expresses renewed excitement every Tuesday and Thursday morning when we announce that it is a school day. He is achieving new goals in therapy and is currently working on: self-regulation (major success in this area), walking up and down stairs with help (he still breaks out in a sweat and needs quite a bit of trunk support when it comes to walking down steps, but he is doing very well going up steps), touching food, speech and oral motor skills, counting, colors and self-helping skills (bathing, dressing, etc.--we are a long way off from independence). I could list many more things that his wonderfully talented therapists are working on, but those are the highlights. 

Isabella is doing incredibly well in first grade (here at home, of course). This year is so much better than last year, and also more fun for me because she is reading and writing and doing amazing things in math. She loves to explore and has recently created her own field journal where unprompted, she gathered her materials and raced outside to observe, document, tape, glue, and draw her discoveries. This time last year, she was still learning to count to one hundred and could only read one to three words, so exciting things are happening. One of these days I will get around to detailing our approach to homeschooling and also the books/resources we use in our day to day schooling. We do have our challenges. I believe it was last Monday when she announced she was quitting school forever. In these cases I tell her she can either get her school work done or take a nap. Since a nap is basically a death sentence she always chooses to complete her school work. If she ever chooses to take a nap I'll now something is seriously wrong with her. 

Isabella reads to Isaac for at least twenty minutes every day. They snuggle in bed together and at the end of each book Isaac shouts, "read book, read book!"

Some Fall Fest Fun:

I still can't believe it was just a year ago that Isaac could barely stand being outside for more than five minutes. He and Isabella happily play outside together for an hour at a time and it is so fun listening to the things they come up and how she readily involves him in her play. 

My father-in-law decided this tree needed to go. I don't always understand his reasoning for chopping down trees, but Isabella had a blast playing in it and in this picture she is pretending to be a sloth. 

I've decided that a little bit of time painting can make everyone happy. On this particular day I was struggling to keep them both occupied so I pulled out the watercolors and turned Isabella's painting time into a history project (we are studying Egypt). Win-win situation. I always ask Isaac to tell me what he made with his painting and this one is a "Firetruck" or in his words, "Woo-Woo". 

My friends are probably tired of hearing talk about how amazing the program All About Reading is, but seriously, it's amazing. This activity is all about practicing the hard and soft sounds of 'c'. 

 Annual Apple Picking. Bonus: This was the first year Isaac didn't spend most of the time crying! 

Field Journal: 

"a tree has lots uv bugs and bark."

Isaac really only cared about getting his turn with the magnifying glass. I know we have a bigger one around here somewhere. 

As you can see, Isaac's reading skills are so advanced he doesn't even need to look at the words. 

That's all for now.

--Sierra

Sleepy Smiles

I guess Isaac was sufficiently tortured, I mean, challenged, at therapy today. A few hours later he took a three hour nap. I ended up holding him throughout the greater portion of the nap, and got to enjoy listening to him giggle in his sleep at one point.

Do you remember how your baby looked right after they'd finished a feeding? Completely drunk, and high on that wonderful breast milk. We used to laugh at Isabella after she finished nursing. Chubby cheeks flushed, body completely floppy, milk dribbling out of the corner of her mouth, dozing in perfect contentment, and then, to top it off, the corner of her mouth would twitch, and she'd smile. A perfect moment. I love sleepy smiles. Sometimes I watch Isabella while she sleeps, hoping that I might catch that little smile again.

I didn't get that experience with Isaac. He was always mad. Before a feeding, after a feeding, during a feeding, it didn't matter, and it was so frustrating. He rarely had that drunken, just breastfed, look of contentment. And he never smiled in his sleep. Probably because he hardly ever slept--he screamed instead. It is by God's grace alone that I survived.

It made me incredibly happy to hear Isaac giggle in his sleep today. I suppose it represents how far we've come and the amazing amount of progress we've made.

I promise he isn't signing 'Loser'. He's been working on signing 'see', and this is actually a very close approximation.

She made a necklace out of shrinky-dinks. Those things are so cool! 

We are now at a stage where I can ask Isabella to read to Isaac so that I can finish getting ready or whatever (productive) thing it is I'm doing. She's not actually reading the words (even though I tell her every day that she could read most of the "real" words). She has every book in our house memorized.

Until next time,

Sierra

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,

Sierra