Saturday, May 29, 2010

Disneyland with a Sensory Kid

In late April, Mike and I spent a week in Disneyland with the two girls.  Spring Break for our school district is the very last week of April, so its the perfect time to go.  The weather there is warm, but not too hot, and the vast majority of schools have already completed their spring vacations, so the place is relatively empty.

In retrospect, I will admit that I didn't expect our vacation to be particularly successful from a parent standpoint.  I knew that Tiersten would be over-the-moon all day every day, but Jennica?  I was worried about a whole host of things.  How do you feed a gluten-free/dairy-free/egg-free child in Disneyland?  How do you keep her from getting overwhelmed to the point of panic in pretty much the most sensory stimulating place on Earth?  I had visions of her ricocheting through the park like a ping-pong ball, seeking some sense of order in the chaos.  I also expected to return to the hotel each afternoon for long naps, thinking that she would need the "down time" in quiet place to re-organize herself.

I honestly planned to be VERY very organized, which helps her to feel organized.  With Grant's jaw surgery the week before we left and spending three days with him in Seattle, plus the first few days of recovery when we got home, I foolishly thought that I would have time to put together some picture schedules and other helpful stuff between running errands for Grant on the couch.  It didn't work out that way!  I was far busier than I expected taking care of Grant!  (Whaddayaknow......getting painkillers, more ice, and food for a 14-year-old boy on demand was work!)

So....on Saturday, we hugged our teenagers farewell and headed to Seattle with the girls.  (The boys went to Disneyland a few years ago and honestly had no desire to return this soon.  Go figure!)  Of course, as I had expected, Jennica was wound higher than a kite.  But she was in control!  This was only the first of many surprises to come.

I'm not going to bore you all with a blow-by-blow account of our six days in Disneyland.  I'll just suffice it to say that Jennica did fantastic!  She ate incredibly well, and we were able to keep her full of fresh fruits and vegetables, and other "standards" of her usual diet.  She hopped out of bed each morning ready to roll, and we stayed in the park every day ALL DAY!  She rode rides that I never thought she would be willing to attempt, and she came off of them smiling!  ???!!!???  Mike and I conferred several times each day, exchanged thousands of shocked looks over the top of her head, and WE HAD FUN!  (For parents of SPD children, you know how precious those words are....WE HAD FUN!  On a vacation.  For more than 10 minutes between tantrums.  WOW!)

I will admit that Jennica crashed for about 5 days after we returned home.  She slept.  And she slept.  And she slept some more.  Her teachers at school reported borderline behaviors that they hadn't seen in months.  We were briefly worried that Splash Mountain might have jarred her wiring loose or something, and we might have lost some of the progress that she's worked so hard to gain.  But she finally got rested up and the SPD has again receded to controllable levels.  Wahoo!

Eighteen months ago, I would never have attempted a trip to Disneyland with this child.  I would have rather had pulled my toenails off with pliars than to go through the effort, moment-by-moment, of dealing with my daughter in that environment.  (Heaven only knows.....we could barely survive 20 minutes in a grocery store without a tantrum.)  

How far we've come!!! 

Tuesday, May 25, 2010

Silly boy!

Dane has grown up a lot this past year--both physically and otherwise.  The driver's license and his Explorer have given him increased freedom and responsibility.  His heavy schedule requires that he stay organized with schoolwork and other commitments.  And he's gained 30 pounds of muscle by daily weightlifting (yes....3-0) since the end of wrestling season in late February.  He should in a helmet and shoulder pads this September (which is the whole point).  Five-foot-10-inches and 190 pounds of high school junior running at me would be enough to send me scrambling in the other direction!

But.....even with all this newfound maturity....he's still prone to doing "silly things."  He's run out of gas.  He's locked his keys in his car (twice).  He plays stupid games and does strange things to any digital photo he can manipulate.  (You should see the one of his face morphed onto Jabba the Hut's body.  Priceless!)

The photo here is another one of his silly stunts, and this one I happened to catch on camera.  On Sunday evening, he and Grant were zipping out the door headed to somewhere.   Grant came back into the house and resumed his seat without a word.  ???  Dane came zipping around the house carrying the ladder to retrieve his keys out of the gutter.  He had been tossing them up in the air as he was jumping down the porch steps and managed to throw them straight into the gutter.  Harmless.....but funny! 

We enjoy laughing with you, Dane!  I'm so glad that you always manage to find the lighter side of life!  :)

Friday, May 21, 2010

Forgot to mention....

With that last post about Grant, you would have thought that I would have remembered to mention that he had a great week of recognition! 

This past Tuesday night was Raymond School District's  "Night of the Arts", at which the bands, choir, art classes, jewelry-making class, drama, and dance classes all exhibit and perform.  Grant was awarded with the "Junior High Band Member of the Year" award.  Wahoo!  He's turned into quite a trumpet player!

And then, on Wednesday night at the Spring Sports Banquet, he was awarded with the "Most Inspirational Award" for the track team.

Way to go, Grant!  We're very proud of you!

Grant's jaw surgery

This is more catching up!  Most of you reading this already know that Grant had major jaw surgery on April 19th at Swedish Hospital in Seattle. 

The following photos are a brief record of the process.  I still don't have a good current photo of him with his "new face," but that will follow shortly. 

1) Relaxing at 5:30 am in his very attractive hospital jammies.  He made friends with his anesthesiologist shortly after this, and got a sincere offer to spend a little time there if he's interested in the medical field in a few years.  Kind of a "job shadow" sort of thing.  I hope Grant takes him up on it!  And by the way, this hospital comes to life REALLY early in the morning.  There were a lot of people around for 5:30 am!!! 
2) This photo was also taken right before surgery.  The profile shot shows the medical necessity of the extension of his lower jaw.  His lower jaw was just flat-out smaller than the upper.  Without surgery, his bottom front teeth would have eventually destroyed the soft tissue on the palate, and stressed the jaw joint itself to the point of erosion.  And yes.....headgear usually stops the growth of the upper jaw to allow the lower jaw to "catch up".  In Grant's case, the headgear just didn't do the job.

3) Fresh out of surgery at 10:00 am, and having a great time  wishing he could die.  They gave him more meds to stop the vomiting, which knocked him out cold for a few more hours.  (Nice to know that my son inherited my vomiting reaction to narcotics.) 
The nurses kept talking about his red hair and cut the doses of all meds due to his hair color.  When asked, they informed me that red-heads are often far more sensitive to meds.  Its a genetic thing!  And fascinating!  He was "banded" shut at this point, and not in the mood to chat anyway.  He finally wrote "Leave Me Alone!" on a white board that afternoon and kept pointing to it whenever we asked him anything. 

4) This photo was taken 48 hours after surgery.  Swelling was at its worst.  His face had been packed in ice for 2 days at this point, and he was taking some nasty pain pills every 4 hours. 

At this point, Grant has one more appointment left with his surgeon and then he is fancy-free.  He thought that all his stitches had dissolved, and then spit out another handful of them just this week.  The swelling is all gone, and he hasn't taken pain pills in weeks.  He has two tiny "x"-scars on his cheeks, where the rear pins were inserted in each side.  The front pins are just below his bottom front teeth and were inserted internally.  He DOES look different, but if it saves him pain and problems in the future, it will be worth it all!!!

Wednesday, May 19, 2010

My changing role

In the past 24 months, I have gone from the parent of a newly-diagnosed child with SPD, dealt with the grief that accompanies diagnosis, fought for a view of my child's future that wasn't overwhelmingly marked with her "disability", yanked myself kicking and screaming into a very restrictive diet for her, learned everything I could learn about her issues, questioned myself, questioned everything I knew about parenthood, and questioned some more. I have stood tall while people around me judged my child for her behaviors. I have silently screamed at the grocery store while my child bounced around the store like a ping-pong ball--wildly raging out of control. And I have experienced FAPE, IEPs, and a million other acronym-laden experiences firsthand. I have even glared down a lofty doctor (or two...or three) that deemed themselves "superior" in children and how they behave and why. I have smiled patiently without "losing it" at a few school employees and/or family and friends that were skeptical early on in our journey. I have studied for hours about vitamin and mineral supplements, and their effects on the body.  I've even paid for naturopathic treatments that almost made voodoo sound logical. I now understand the full effects of "malabsorption" and not only on the body, but on the developing brain and how SPD can be the result or the side effect. I have banged my head against the wall, cried, vented, and been tested beyond what I honestly knew I could withstand. And during the entire 24 months, I was still a mother to three other children, and wife, and owner/operator of a very demanding financially-based business in the middle of a recession for which, simply put, my profession was, partially blamed for causing.

So....Gosh Darn It.......if there is anyone out there that wonders why my landscaping looks crappy in front of my house or has any other comments about my short-comings......I've been just a tad BUSY! (Great big "raspberry" straight at ya!!!)

With that off my chest, I can't help feeling like my role is changing. Jennica has gained an amazing amount of ground. Does she still have sensory issues? Absolutely! But she is learning to manage her response to overwhelming sensory input! Two years ago, she could barely handle something so relatively mundane as the sensory input of walking down the school hallway with a class of children. She's still on her restrictive diet. But we recently ran out of pro-biotics and found out that they truly are important when she complained of stomach aches. We started them back up and after about four days, she's fine!!!  If she has to be on pro-biotics for healthy digestion the rest of her life??? No big deal! She still has "issues" with crowded gymnasiums, but its improving and she lets us know, in acceptable ways, when she needs to leave. She still has "issues" with correctly identifying body clues such as cold, hot, hunger, thirst. But that is also improving. She no longer just lies on the ground and screams in frustration, unable to "organize" her brain into formulating the cause and solution to her problem. She usually tells us first!!! And we have time to help her locate the source of the discomfort and correct it before it is unmanageable. She has friends! She is academically "typical". Her language, fine and gross motor skills, etc. are all "typical". role is changing. I'm beginning to speak about SPD from "the other side." There are so many parents and children either entering the trenches, or stuck in the trenches (for years) without a clear path on how to get out. Or stuck on a clear path that just isn't working, but with no resources to find a different approach. There are so many theories, and every day they change. Do you listen to the anti-vaccine paths? Do you try to naturopathic methods? Do you identify yourselves with the autism community? Do you try OT or Dr. Greenspan's methods (floor-time)? What about traditional medicine? Do you fight with your school? When do you "go with your gut" and when do you try something that feels wrong because you have nothing left to lose?

I'm finding that I want to be the face of hope to all the people who are still fighting at the height of their battle!!! I want to give the encouragement to keep fighting! Don't give up! Your journey will not mirror mine! I can tell you what has worked and is working for us, but that is no guarantee that it will work for you or your child. The important part is to keep going!

For now....Let the photo of Jennica be the face of hope for SPD! Keep her smiling face in your mind and have faith that you can help your child reach the same point in their climb. She's beginning to take so much joy from the simple things in life. Finally! And the parents that are living this battle know what I'm talking about when I brings tears to my eyes to watch her laugh in the hallways with her friends while the noise and chaos surrounds her at the end of recess. The simplicity of a normal child at play. Don't let SPD take it away! Keep fighting!!!

Drop me an email. I'd love to share your journey!

Tuesday, May 18, 2010

The difference a great school makes....

This is a little bit tardy for posting.....but I'm catching up, remember? So read on.

In March, the Missoula Children's Theater came to Raymond School District. (I LOVE them, by the way! It is the perfect answer to drama for small schools. If you aren't familiar with MCT, google them!) Jen came home all week before play try-outs absolutely begging to try out. I smiled pleasantly at her, and silently threatened to hang the person that was making it all sound so wonderful. As a kindergartener, Jen's experience with MCT was only through Tiersten last year. So......??? Where was she getting the idea that this was "so much fun". It's WORK! Albeit, only for a week. But WORK. And the sensory-parent in me was anticipating the horrors of the costume and make-up, the visual impact of hundreds of pairs of eyes peering at her on stage, the auditory impact of music and singing. Remember.....she coudn't "do" the Christmas Program. So why did she think play try-outs sounded so fantastic???

Lo and behold, Monday came. And I found out that it was our very own principal (who happens to have a special relationship with Jen) that was talking up the play. I arrived in the school, and she immediately spotted me and asked, "Jen's trying out after school today, right?" My eyes narrowed. After a few direct questions, I indeed had the person-needing-throttling. We proceeded to have a quick banter regarding the sensory demands of the play, ya da ya da ya da.

And then all the sudden, our principal said something astounding to me. "You know, Mom......she has the right to a free appropriate public education." And then she told me that, if necessary, Jennica's para-educator would be paid to work into the evenings all week, so that Jen could have her "helper" there to assist her with the sensory needs.

Huh? The principal was telling ME, the child's rights? This conversation almost ALWAYS works in reverse. I was blown away and I backed down immediately. If my school district is THAT committed to helping my child be successful at something she wants to attempt, why would I say, "No."??

As it turned out, Jen crashed and burned at try-outs. I was right. Halfway through try-outs she started twisting her hair and chewing on her shirt. And then she turned to her teacher and asked that her Mom be called so she could go home. The sensory input was too much and she needed out of there.

But it doesn't really matter. What matters is that my daughter had a chance to participate at the same level as all the other boys and girls. And that my school district was willing to make sure that she could be successful, even if that meant paying an employee! WOW!!! For parents of children with disabilities, this is HUGE!

And for Jen.......she got to try out and she was happy with that. The decision was HERS not to continue. Mom didn't have to tell her she couldn't try out. And the school district didn't say she couldn't try out. She left while the experience was still positive, and she's already talking about trying out again next year. :)

Wednesday, May 12, 2010

The winds of change

Ten weeks without a blog update, huh? I think thats a first for me since creating this blog. But its been a busy 10 weeks. Let me explain.

First, my business exploded in March. It needed to happen and I came out of it inspired to appraise again. It was nice to be able to focus on my career for a month--even if it was relatively short-lived because.....

.....In April, Grant had jaw surgery. Eighteen months of preparation finally culminated into 36 hours in Swedish Hospital and a full three days in Seattle. I'm happy to report that it went well. Remarkably well, actually. Once he was past the vomiting blood with his jaw banded shut coming out of surgery. That part wasn't so pleasant. (He was heavily drugged at that point so he doesn't remember it clearly. I'm not so fortunate.) They cut his lower jaw bone lengthwise in three places with a reciprocating bone saw (oooohhhh.....say those last three words again. Sounds great, doesn't it?), slid the pieces around, and pinned them with titanium pins. With a mouth full of stitches, little stitches on his cheeks, and a head packed in ice, they sent him home. He swelled up, which is to be expected. And although he wasn't wired or banded shut after the 24 hour mark, the swelling made eating pretty difficult for about 10 days. But he's now 3 1/2 weeks post-surgery and doing very well. He will compete tomorrow at the Track and Field League Championships in 3 events, after qualifying this past Monday. (Yes....he went back to track already. And yes....I think he's insane.) His diet is still limited to nothing that requires intense pressure or pulling. In other words, no licorice, taffy, raw get the idea. Otherwise, he's footloose and fancy-free. Oh......but no pole-vaulting or contact sports until the end of June. On a final "Mom note"........yes, he looks different. Its still disturbing to me how much his facial shape changed with the surgery, but this was medically necessary and Mom will just have to adjust to his new face. :(

The end of April, Mike and I and the girls went to Disneyland for 6 days. Mike was the only one with previous Disney experience, so I wasn't totally sure what to expect. It was a pretty awesome vacation!!! The girls were wonderful, and we learned that Tiersten is a daredevil beyond our wildest expectations. No ride was too hairy and there was only one that she was too short to ride. Darn......I was disappointed not to get to experience the Mali-Boomer (Yeah...sure!), but she and I did California Screamin' and the Tower of Terror together. Mike doesn't "do" big rides, and so he happily stayed with Jen. From all descriptions from Disney addicts, we were there at the perfect time. The weather was in the 60s and 70s each day, and the longest we waited in line ANYWHERE was 45 minutes to meet Tinkerbell. (Personally, I could have skipped that one, but was important to the girls.) We consistently walked on to even the headliner rides with less than 10 minutes of a wait. This allowed us a LOT of time to ride again and again, which we did on several. With Jen's SPD, we totally expected her to melt each day in over-stimulation. Much to our amazement, she was phenomenally in charge of her senses. As long as she was well-fed, she was a complete trooper! She very quickly showed us that she was quick to cover her eyes, or limit sensory input in some other way on some of the rides to make it tolerable. Impressive! Truly. Considering that this is a child that wouldn't even attempt to ride a bike 18 months ago due to the overwhelming sensory forces involved.

Which brings me back to the title of this blog post. The winds of change are blowing around here! After 18 months of preparation for this major jaw surgery for Grant, it is finally behind us. Dane is nearing the end of his sophomore year of high school and I totally realized at his self-led conference at the school today, that he is TWO YEARS from graduation! He's stepping up to meet the challenge, and his Junior Class Schedule that he presented today is.....challenging. To say the least, I'm proud of him! Tiersten is also maturing and becoming more independent. Her no-fear approach at Disneyland is definitely carrying over to her horsemanship, and she's demanding a higher level of instruction. As always, I'm eternally grateful that we're with a trainer that understands my priorities for safety at Tiersten's age. (Good grief...I sound like MY has finally happened.)

And, as any family with a special needs child knows, the life and behavior of the special needs child often rules the roost. Regardless of how hard you might try not to let it, accomodations for that child are a necessity, and so it goes. But since Christmas, Jen has matured immensely. She is still gluten-free, casein-free, and all that other jazz. She still has SPD. But she is regulating HERSELF much more. She now recognizes the signs of sensory overload, and is making good choices and asking for intervention as needed to help her regain control BEFORE she is melted into a screaming puddle on the floor. She has lots of friends and is accepted by her peers, which means she is interacting with them in age-appropriate ways. She is academically in the middle of her class, which means that she is controlling her sensory environment and getting the content out of what is being taught. She is able to accept last-minute changes in life, and is able to deal appropriately when unexpected things arise. We are SO SO SO grateful for our miraculous school district, which has helped all of this happen. While we certainly do our part here at home, we always knew that it was really the intense sensory environment of a lively elementary school that could make or break our journey. So many parents of SPD children give up and home school, in order to keep the sensory input at a level that the child can handle. I would never never never assume that all SPD kids need to remain in public school, as our situation with a 1:1 paraeducator that has learned to balance the right amount of help while encouraging independence is rare and ever-so-perfect. For our daughter.......PUBLIC SCHOOL IS THE RIGHT CHOICE!!! It is SO great to see her beginning to be successful!!! And not just successful at an individual level, but successful at an age-appropriate, typically-developing level. Wahoo! There is hope!!!

And so it goes. Spring feels good. I'm back and will blog again soon! :)