You know how sometimes when the going gets rough it’s hard to see the light at the end of the tunnel?  Well, fortunately I’m not at that place anymore.  But we still have our rough patches, like yesterday’s massive tantrum- courtesy of Emma, the whole side effect of gaining 22 pounds in 3 months- Emma, not me (unfortunately I can’t claim medication as the reason for my weight gain), etc.  So it’s important that we always celebrate the little milestones in our lives.  Becomes sometimes those tiny little milestones really feel like gigantic leaps.  And they are in their own right.  So, even though we’re doing pretty good over here at our house, here are a few milestones we’ve accomplished today.

~ Emma got up at 4:45 in the morning to go potty all by herself! If you recall, she had some pretty big hip surgery, which required the use of a wheelchair or a strong Mommy, Daddy, or Miss Jenna. (seriously, the reasons my arms aren’t ripped by now is still a mystery to me).  Anyhoo, that being said, trips to the potty required us carrying her.  Not thing time.  While she’s not allowed to walk up stairs (because of said stairs), she got up, crawled into the bathroom, and even washed her hands!  Of course 5 minutes later she was calling me because she wasn’t tired.  And then she was hungry. Yadda, yadda, yadda.  After a cheese stick, water, lights on low, reading to herself, she finally fell back asleep.  Mommy never did but nevermind that.  She went potty by herself!

~ I had a really great coffee date with my girlfriends.  To me, that is a milestone because I am blessed to have such great women in my life!

~ I had dinner in the crockpot by noon and on the table by 5:30.

~ I didn’t screw up the rice.  I’m not sure what it is with me and rice (same goes for jello), but I just can’t get it.  Thank you to Safeway’s brand of Jasmine rice for being foolproof.

~ I was working on homework with Mason and we were writing numbers.  3′s and 5′s are really hard for him.  I gently tried to correct his 3 and he got frustrated.  I asked him if he wanted to do it the correct way or his way.  Can you see where this story is leading?  After about 2 minutes of thinking, he decided he wanted to do it his way.  So, not a milestone but a really cute story I want to remember in the future.

~ I worked on my Etsy shop and got a bunch of draft listings done.  I will take pictures tomorrow.  Which brings me to my next milestone…

~I made my very own lightbox today and it cost me under $5!  And it was fun to make!  Kind of.  The great tutorial I used can be found here.  Super easy to follow and this guy is funny!

So it may have seemed like a mundane Tuesday to most.  But I feel pretty accomplished with what I got done. Lots of little things, which sometimes can yield the best results!

On a separate note, have you ever wanted to be a fly on the wall regarding a certain situation?  Tell me about it!
And related to that, can you comment on my blog? I’ve heard it’s down. And I need to switch some settings. So please leave me a comment so I can see if it’s working or not! And tell me about the time you wanted to be a fly on the wall!

I didn’t give shout outs to the amazing friends I do have!  And they know who they are!  They are seemingly by my side even when I’m doing a crappy job at returning calls/texts/emails.  Simply texting to see how I am brightens my day! I so appreciate their support.  They might tell me straight out they don’t understand, and that’s okay.  But they’ll stick with me through thick and thin.  Love. There’s the next level of understanding and compassion when you truly connect with a person who has a child with special needs.  With those friends, you never have to clarify or explain.  They seem to just “get it”.

On another note, quick question for parents of kids with special needs.  Of the many specialists Emma sees, a psychiatrist is one of them.  This is mainly because when she got diagnosed with ADHD (without the H), the neurologist thought it would be better for a psychiatrist to manage those medications, instead of the neurologist.  Anyway, it seems that her behavioral meds have just. stopped. working.  Focus isn’t there, and anxiety certainly is back.  Has this happened to anyone else?  When the meds just stop working?  So on Thursday we head back to the psych to see what else we can try.  I have some suggestions of medications that have worked well on other kiddos.  Basically, at this point, Emma seems to be regressing socially.  Her ability to ignore outside stimulus is zilch.  She can’t do “too much” in a day right now.  For example, I took the kids shopping with my mother in law and myself.  Then we met up with the men for dinner.  Well Emma had a fit at the table.  We almost took her out of the restaurant.  I wouldn’t be as nervous if this had always happened.  But she’s been on a good streak for awhile.  I think the stress of the last month of school may have taken a bigger toll on her then we thought.  I’ll keep you posted.

Lastly, thanks again to everyone who visited yesterday!  I was just under 500 hits…a definite record for me!  I hope you liked what you read and that you’ll come back and visit soon!  You can also “like” Jumping Waves on Facebook here.  And I do need to post (pictures at least) of Mason.  I don’t want the new readers to think I only have 1 child!  Emma has a super-cute little brother.

Have a great weekend, everyone!

Emma and Mason hanging out on a big ol hovercraft in Oceanside.

Yesterday Emma spent the day at this private school “shadowing”.  I was nervous but excited for her.  As I told you yesterday, she was very excited to be at a new school to try out.  I was tempted to call during the day to check up on her, but I didn’t.  When I picked her up at the end of the day, I came a little early in case the director wanted to chat with me.  I didn’t see the director, but sat in the office with 2 other parents and the secretary.  The secretary told me Emma was just a doll (no surprise there, right?) and that she fit in perfectly.  The two parents that were in the office immediately introduced themselves to me and told me their kid’s names.  If my mouth hung open it’s because I was a little shocked.  I’m not used to such kindness and warmth by parents (strangers) at school!  Sorry, I’m not!

I spoke with the teacher, Emma had a great day, and despite being a bit quiet she even met some new friends!  I was so happy and so relieved.  And this morning I received this email from the director:

Jessica,

Emma had a fabulous day and fit in perfectly. We could really design a scripted education program for her and with our small instructional environment she would really do well here. We would love to have her be a part of our school family. I hope this happens.

I will be as supported as possible with this process.  Please keep me posted on all the district details that occur.

Thanks for allowing her to spend the day.

Regards,

Director

Of course this email made me extremely happy! Just knowing we have the support of the school we want her to attend is really so special.  It means we found the perfect environment for her.

To switch gears a little (okay, a lot), I wanted to write about something that’s been on my mind a bit.  But I’m not sure how to vocalize it, so just bear with me.  I think it takes very special people to “be a presence” in the lives of children with special needs.  Certainly I feel that God put Brett and I in this position of raising Emma because he knew we could do it.  He knew that Emma would be raised in a supportive and loving family.  And not just our immediate family, but our extended family.  We have wonderful families that absolutely cherish and adore Emma (and Mason, too, of course!).

It takes special doctors to treat Emma.  Fortunately we are in the wonderful care of Phoenix Children’s Hospital.  Most of Emma’s doctors are there.  We even go to L.A. to see her wonderful neuro-opthalmologist.  I will  fire any doctors who are not performing to my expectations in their care for Emma.

It takes special friends to “hang in there” with us when we’re going through one of our many trials and tribulations.  There are simply people in our lives that can’t handle the challenges that we face.  It’s weird to say it, especially because they’re our challenges.  It’s shocking to me, though, how many friends I’ve lost touch with because (seemingly) they can’t handle our rough patches.  I should say “good riddance” and ” they don’t deserve us, anyway”.  But again, as it keeps happening, I get stronger.  Yes, it keeps happening.  I’m 33, folks!  Enough with the highschool BS!

And then educators and people in the field of education.  I’ve always said it takes angels to be a good special education teacher.  I could never do it.  Yes, I was a teacher; yes I have a daughter with special needs.  But I could never be a special education teacher.  I truly believe the people around her cared about her.  And I do believe they wanted what was best for her.  I honestly do.  But I think that their egos got in the way of admitting that they weren’t able to do enough.  And that the environment she was in wasn’t the best one.

And then here’s my other (and last, I think) issue.  Mixing friends and business.  Sketchy. Now, to be clear, I worked with 2 teachers.  One was my college roommate.  We had so much fun together.  I think it worked out really well.  We just really get along and get each other.  I hope she’d agree with me on that. But it’s interesting how dynamics change with co-workers turned friends.  I’m a friendly type of gal.  I’d rather work with people I am friendly with than people who are duds.  However, now that things have changed and I’ve left on a “bad note”, it’s interesting to me that I’m really not hearing from them anymore.  Perhaps they feel like they’re in an awkward position.  If that’s the case, I have one question: “how do you think I feel?” It’s just weird to me.  And it’s too bad, too.  Because I had fun at the school.  I really did.  That’s why the evaluation came as a shock.  And now I don’t hear from my friends so much. <cue song: Things That Make You Go Hmmmm>

I want to know from the parents of kids with special needs.  Or anyone who interacts with families with special needs.  Is it just me? Or are friendships tricky for you too? Be honest!!

A week ago we had a few half-days due to Parent Teacher Conferences.  I took that opportunity to have 3 of Emma’s friends over for a playdate.  These 4 girls are just the sweetest things ever!  They all have special needs and the 4 of them stick together like bandits.  They are special little girls indeed.  The moms thought I was crazy for hosting a playdate.  I couldn’t have been more excited.  It was so adorable to watch them play together and interact.  Yes, they were loud.  Yes, they were goofy!  But I loved every minute of it.  I envisioned slumber parties in the future.  And I embrace slumber parties in the future.  It was a taste of normalcy for Emma…something that I always want for her.  I decided a “group activity” might be a good idea so we baked cupcakes Chocolate with pink frosting, of course!  Take a peek at these adorable pictures!

I have an admission.  I’m anal retentive justabit.  So, for this post, since I am having a hard time organizing my thoughts, I will bullet the highlights.  And WordPress allows me to bullet.  Score!  Bear with my and my type-A mind.

• We (me and Em) had breakfast on Saturday morning with 4 other people from our Focus Families group.  Score! 2 we had met before, 2 we had not.  It was a crazy busy breakfast, but fun to learn about new friends, and catch up with old.  And the highlight of that breakfast (can I sub-bullet? no I cannot) Marshelle got Emma got swallow her capsules!! This is huge news.  Huge.  And she didn’t even have to convince her, bribe her, or sit on her! Score!
• We went to Stuffington Bear Factory and took a tour and built our own bears with the whole group.  So fun!!
  

  The girls (Emily, Emma, and Jewelia) and their bears!

• We spent the afternoon at the hotel with Marshelle and Karen and their granddaughters.  Girls were so cute together.  Seriously cute.  Marshelle and Karen and I caught up.  This is where my former tweet and facebook post about being with people who 100% understand you comes in.  Right there.  No explanations needed.
• We got to visit the exhibitor hall.  Let me just tell you about it.  I’m at the ACB (American Council for the Blind) convention.  The exhibitor’s hall was full of blind people everywhere!  Of course I expected it, but to experience it is something else!  Canes, guide dogs, human guides, everywhere!  We didn’t really find anything for Emma, as she really doesn’t need any visual aides.  I’m glad we went, though!  Girls also got to swim in the pool in the afternoon. It was hot!!
• Dinner was SUPAH! I felt bad because they wanted authentic Mexican, but I only know good places up by us, not in Downtown Phoenix.  But I got the name of a place from a friend of my Mother In Law.  And it was fabulous!  Authentic, delicious, and everyone was impressed!  Score!  The only thing they need to improve is their margaritas.  I’ve had better.  Just sayin’.  Ooh, I should’ve tried a michelada though!
• This morning was another breakfast with the gang.  So much fun.  Unfortunately Marshelle, Karen, and the girls head back to California today.  It was a quick weekend for them.  I’m hoping to meet up with Sarah this week, but we’ll see how things pan out.  It’s a lot of driving from my house to downtown.

All in all, a wonderful weekend!  We had so much fun and it was great meeting people that really do mean a lot to me.  I don’t know if they realize how positively they affect my life!  They’re like a breath of fresh air!  I still need to tell you about Marshelle…she’s a hoot!  And a hero!

How was your weekend?

I have to tell you about my weekend!  But I have to try to find the words to describe it.  I knew it would be fun.  I knew I would get encouraged and inspired.  But it was even more so then I thought it would be!  For those of you who are new to my blog, I belong to two groups that support Emma’s condition (SOD)  They are the MAGIC Foundation and Focus Families.  They provide such a wonderful support system to me.  Always.  Whenever I need it.  They were especially supportive in the beginning when Emma was first diagnosed.  Through the emails, you become familiar, friendly, and in some cases very close with these people.  3 of my close friends came out this weekend!  One I had never met before, and I was really excited to meet her.  I picked Sarah and her friend up at the airport.  It was an interesting meeting as we had never met before, and Sarah is blind.  I couldn’t hold up a sign for her, and didn’t want to call her name out!  Fortunately it was easy to spot Sarah and her friend.  They had guide dogs with them, and Sarah had also told me what they were wearing (Sarah and her friend, not the dogs!).  And from that point there was an ease to the friendship.  It was like old friends reuniting.  Except- and I did admit this to Sarah- I didn’t have any experience with bling people.  What should I do?  How do they need help?  She laughed it off by joking that first I needed to kiss her feet.  This was not going to be as hard as I thought!

To say that Sarah is an inspiration is a huge understatement.  She’s my age and living completely independently.  While she doesn’t have the hormone deficiencies that many people with SOD have, she’s got her plate full of other conditions that continue to challenge her.  But she never is down about it.  She doesn’t complain about it.  She does what she can and she does remarkably well.  She is a huge advocate for teaching children some independence.  It doesn’t matter how severe the condition is, every child can have some independence and it’s so important in their upbringing.  Sarah most certainly didn’t get to where she is today because she was sheltered and given everything she wanted.  She has worked very hard to get where she is.  And I’m sure it wasn’t rainbows and butterflies the whole time, she is who she is because of her wonderful upbringing.  And she emphasizes that to the parents on the list who may want to coddle their child.  I love that she speaks her mind, too.  She’s a smart cookie and isn’t afraid to share her knowledge or her experience.  She’s helped encourage me to push Emma to try new things.  Or to back off when I want to shelter her more than I should.  If I have questions about her schooling, she’s willing to offer her two cents.  And then there’s her dog.  Fargo is C.U.T.E.  And so sweet and well-behaved.  We became friends fast when he laid on my feet the first day at lunch!

"Fantabulous Fargo"

I haven’t even told you about my weekend!  Or my other friend, Marshelle!  I will save that for tomorrow.  It’s worth sharing!

And…did you know I took 909 pictures during our 11 days in California?  I need to go through and pick a few of my favorites to share with you.  We had a GREAT trip!  So stay tuned….I have  more for ya!!  Also, I wanted to remind you that I have a Facebook page and would love if you liked me!  You can visit me here.

Actually, there’s no real update for the IEP, other than it will take place on Thursday, February 11th.  2 weeks.  I ran into Emma’s special ed teacher and she asked me how I thought Emma was doing.  So I told her my thoughts (something I will share after the IEP is over with), and she basically said, “I don’t think that’s going to work.”  At the time it seemed very blunt and abrasive.  The tone shouldn’t have come out of the mouth of a special education teacher for a kindergartner, that’s for sure.  So I called Emma’s teacher…by the way, she’s also my roommate from college…to tell her about the conversation.  It was after she and I talked that I kind of switched my train of thought regarding Emma’s situation.  I was able to see it from a different angle.  Again, I’ll share with you after this IEP.

After that whole situation went down at school, I was frazzled. Stunned.  A little bewildered.  I had coffee with some good friends and they said everything I needed to hear. While they don’t live in our experience first hand, they’re aways able to say just the right things.  Or to give me different points of view.  Basically, they’re lifesavers.  I’m forever grateful to them for the support and encouragement they give me when I’m not able to provide it myself.  Love you girls…you know who you are!  ;-)

The moral of the story is that everyone needs a good support system.  If you don’t have one, life can be pretty tough (with or without a child with special needs).  That being said, they’re hard to come by.  If you have good friends, let them know how much you appreciate them!

I have now climbed off my sappy soap box.

What are the ways in which your friends encourage you?

Very early on in Emma’s diagnosis, I got connected with two organizations that had online communities.  I  became very involved with them through email.  I started friendships.  I received advice and encouragement.  That support has meant the world to me.  No joke.

If you are a parent of a child with special needs, my advice to you is to get connected. You won’t be sorry.  Google whatever syndrome it may be, and see where you end up!  One of my groups is through Google…it’s so easy to stay connected with them, and there’s always someone there to help answer a question!  The best thing about forming these bonds is that these people know exactly what you’re going through.  Seriously.  Everytime I have a question, someone has “been there, done that” and has taken the time to help me with it.  There’s no comfort quite like it.

If you want to take that “connection” one step further, attend a conference.  Emma and I have the amazing experience of meeting my “online friends” this summer at the MAGIC Foundation annual conference outside of Chicago.  I can’t even begin to tell you what an amazing time I had.  We were part of a huge family where no one was looked at oddly…no rude comments were made…no explanations had to be given.  It was truly magical!  During the day, I would attend educational sessions with doctors, psychologists, etc.  Emma had a blast in the day care that was provided right down the hall!  At night, they put on wonderful dinners for everyone to attend.  There was dancing, games, music, and more.  Truly fun for the whole family! And since we were out there, we spent an additional 5 days in Chicago and had a BLAST!!  (wonderful city, by the way…I’ll be going back!)

So in the end, my advice is to get connected with your community.  Let me know if you need help!

Emily and Emma at the MAGIC Foundation

A field trip to the local water park in Illinois.

I am SO lucky to call these ladies close friends! They "get it"!

Are you connected with any groups?