1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I’ve gotten a good night’s sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors’ visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.  It’s true.  If you ask me how I am, assume I’m tired.  I am blessed to have kids who sleep well, but even my 8 hours a night still doesn’t seem enough.  If I’m not physically tired, I’m emotionally tired.  It just is.  

2. I am jealous. It’s a hard one for me to come out and say, but it’s true. When I see a 1-year-old baby do what my son can’t at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend’s kids. Sometimes, I just mourn inside for Jacob, “It’s not fair.” Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob’s rare condition. It sounds petty, and it doesn’t diminish all my joy and pride in my son’s accomplishments. But often it’s very hard for me to be around typical kids with him. Which leads me to the next point… I agree, it’s hard to say, but it’s true.  I don’t share those feelings with anyone, except for Brett.  I bite my tongue.  I will say, however, that it’s not always difficult for me to be around typical kids with Emma.  Maybe because I also have a typical kid?  Maybe because I make sure that the people we surround ourselves with are loving and supportive?  

3. I feel alone. It’s lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it’s so not what my world looks like (check out Shut Up About Your Perfect Kid). It’s been a sanity saver to connect with other special needs moms, with whom it’s not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob’s unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.  Again, I know that I surround myself with friends and family who may not understand what we’re going through, but they’re extremely empathetic and are wonderful listeners.  I am connected online with a community dealing with Emma’s condition.  And I’ve found life-long friends through this community. Do read the book “Shut Up About Your Perfect Kid”.  It’s wonderfully written with just the right amount of humor.  

4. I am scared. I worry that I’m not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Jacob’s future, whether he will ever drive a car, or get married, or live independently. I am scared thinking of the hurts he will experience being “different” in what’s often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my son). I am scared about finances. Finally, I fear what will happen to Jacob if anything were to happen to me. In spite of this, my fears have subsided greatly over the years because of my faith, and because of exposure to other kids, teenagers, and adults affected with Jacob’s disorder. When I met some of these amazing people at a conference last year, the sadness and despair that I was projecting onto Jacob’s future life (because it was so unknown) melted away when I saw the love and thriving that was a reality in their lives. The fear of emotional pain (for both me and Jacob) is probably the one that remains the most. Spot On.

5. I wish you would stop saying, “retarded,” “short bus,” “as long as it’s healthy… “ I know people usually don’t mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It’s disrespectful and hurtful to those who love and raise the kids you’re mocking (not to mention the kids themselves). As for the last comment, “as long as it’s healthy,” I hear a lot of pregnant women say this. Don’t get me wrong, I understand and share their wishes for healthy babies in every birth, but it’s become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. “And what if it’s not healthy?” I want to ask. (My response: you will be OK. You and your child will still have a great, great life.) Again, I couldn’t have said this better myself.  I hate the word “retarded”.  People who say this sound extremely ignorant and uneducated.  I cringe when I hear friends who are teachers say it.  And the last one…”as long as my baby is healthy.”  I said it too.  With each kid. But now the tables have turned.  My kid wasn’t healthy.  So what?  So I keep doing what I need to do because I love her unconditionally. You do whatever it takes when you are a parent.

6. I am human. I have been challenged and pushed beyond my limits in raising my son. I’ve grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I’m just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watchMad Men, and like a good cashmere sweater. Sometimes it’s nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it’s because it can be hard to talk about my son. Which leads me to the final point… Again, spot on.  I have really found that in this journey of raising a child with special needs (and I need to mention that I am so blessed to have a committed partner in crime), I need to maintain my own identity.  Or else any sanity I do have will go out the window.  It’s important I treat myself to pedicures.  It’s important I meet the girls for coffee or (better yet) wine.  Sometimes a little retail therapy is what the doctor ordered (do you need my doctor’s name?). I will never lose those things that make me happy.  Because when you put yourself last, you really are affecting everyone in the family.  I know this now, as I’m in the middle of losing 40+ pounds.

7. I want to talk about my son/It’s hard to talk about my son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I’m having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don’t often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn’t mean that I don’t want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like “How did Jacob like the zoo?” or “How’s Jacob’s sign language coming along?” rather than a more generalized “How’s Jacob?” which can make me feel so overwhelmed that I usually just respond, “Good.” Starting with the small things gives me a chance to start sharing. And if I’m not sharing, don’t think that there isn’t a lot going on underneath, or that I don’t want to. And sometimes I just need to vent or talk.  I’m not looking for advice or suggestions, or most importantly, validation that I’m doing a good job.  It’s such a card toss.  I know I’m doing a good job.  I’m doing the best job I can.  However, when Emma’s going through a rough patch (which can seem like every other day) I feel like the worst mom ever.  It’s frustrating to go through.  And a lot of times what I just need is a pair or ears to listen, even when there’s nothing to say.  It’s okay to say nothing.

Needless to say, I loved this article.  Really well written.  I encourage you to read it in its entirety.  For now, I only needed to highlight the “7 Things”.

If you are a parent/caregiver of a special needs child, which point speaks to you?

If you are a parent/caregiver of a typical child, were there any points that you learned from?  I’m curious to see what your answers are!

Lastly, don’t forget, just a few more days for the Candle Drive, sponsored by Inspired Home! Click here to learn more about it!  And only a few more hours to win a free Pink Grapefruit candle! Did you enter to win?

So before I went to work “de-cluttering” her room, I did manage to take a few pictures so you could see what I was talking about. I apologize for the quality of my iPhone pictures.

This is the eyesore doll house I was talking about. There's way too much going on here.

I know this doesn't look that bad. It's usually much worse with all sorts of stuff on it.

Again, the desk isn't that bad, but most of the time it's cluttered with miscellaneous papers, crayons, pencils, etc.

The bottom of her bed has all of her baby doll toys…and all of her dolls, stuffed animals, etc. It's the first thing you see walking into her room.

With Brett’s okay, I got to work on finding new bedding. It was between the picture in Monday’s post, and another bedding set. I went with the second choice for a few reasons. First, I was worried about the rose appliqués on the first choice. It was machine wash, but I was leery. Plus, it was a duvet, which means I’d need to purchase an insert. And I was trying to keep the costs minimal. Lastly, the comforter I chose was a comforter (no insert needed), machine washable, AND reversible. So- heaven forbid- if Emma decides to add her own artwork (it’s happened before, I realize it can happen again), and it doesn’t come out, I can just simply reverse it!

That day I decided to move the doll house. It was the worst of all her “fixtures”. And then I moved the dolls and accessories to that empty spot on the wall. Immediate relief. I also trashed or donated all toys that had little pieces. I need to remember to never buy toys with little pieces for her. It’s too much. And it ends up everywhere. So annoying. And not helping with the over-stimulation! Just those few changes made a world of difference. And when she entered her newly simplified room, she was so excited. She knew her room before was too busy. And now that she knows she’s getting a new room, it’s all about transforming it into a princess room. So with her suggestions and my inspiration, I’m excited to make it quite the princess retreat. I’ll keep you posted with “after” pictures!

Don’t forget…there’s still a Candle Drive going on, along with your chance to win a free Pink Grapefruit candle!!  You can enter here! Please tweet, share, email, and get the word out!  I’m excited to be hosting this with Catherine of Inspired Home!

Yesterday morning was rough. In fact, I wanted a Monday Re-Do.  Mondays are often hard for Emma, and this one was no different.  Except for the fact that it was a little more intense then it usually is.  Many factors went in to our rough morning.  Not enough sleep Sunday night (11 instead of 12 hours. I know.). Not enough down time on Sunday, after recuperating from a busy Saturday.  We didn’t pick out her outfit Sunday night to prepare for this morning.  I ran out of monkey juice for the morning medicine.  And…wait for it…I made her wear leggings with her dress.  Yes, that was the culprit behind our rough morning.  No amount of coaxing or explaining would get her to put on her favorite pink leggings with silver butterflies.  Not her favorite shoes, not wearing the dress she wanted, and definitely not the fact that it was going to be a lot cooler today.  My girl doesn’t always respond to reasonings such as that.  She’s stubborn.  And that’s putting it mildly.

In the end, she ate a good breakfast, which is super-important, she had her leggings on, and she did get on the bus.  She did not, however, let me brush her hair nor brush her teeth.  It’s mornings like these, though, that remind us to choose our battles.  Leggings were something that we weren’t going to give in on.  Brushing the teeth and the hair?  Eh, she’ll survive.  If there are some of you gasping out there, certainly you haven’t been long time followers of mine.  It is what it is.

SO.  I forced myself to work out.  I enjoyed my workout, as I usually do.  I got to the grocery store.  I showered.  And I chatted with my mother-in-law and my girlfriends about the prospects of doing a room re-do.  Her room, as it stands, is very girly and busy and typical of what you’d see for an 8 year old girl.  Problem is that Emma’s not typical.  It’s too bright.  It’s too busy.  There’s too many toys, and in general there’s too much going on.  I need to simplify and create more peace in there for her.  And we need to take out the toys that, when she decides to throw things, won’t hurt.

This is where I ask for help.  Have you done a room re-do for your child?  Have you simplified a space?  If so, please leave me a comment with the link to your post…or a post you’ve read.  I’m looking for any and all ideas.  I did pick out bedding I liked from Land of Nod.  I love this because it’s soft and simple, but still very feminine.  And Emma’s walls are a soft green, similar to the picture.  I don’t want to change too much.  I’m mostly taking stuff OUT of the room, and creating a cleaner space.

Lastly, don’t forget about the candle drive that I’m doing in collaboration with Inspired Home! Go check out the Pink Grapfruit candles.  When you purchase one (or more!), 10% will come right back to Jumping Waves so I can continue to provide families with the services of an educational advocate!  Pink Grapefruit is actually my favorite scent and these make beautiful Mother’s Day gifts and hostess gifts.

You can win one of these amazing candles when you leave a comment on this post. There are ways to get multiple entries, too!

True Random Number GeneratorMin: 
Max: 
Result:14

Donna F. said “Coconut Lemongrass sounds amazing!”

Congrats, Donna!  I will be emailing you to exchange details!

Friends, I know I’ve posted about my friend, Catherine, on here before.  She’s got one of the biggest hearts of anyone I know.  And she approached me last week wanting to know if I would be interested in partnering up with Inspired Home for a candle drive.  Partner up with Catherine from Inspired Home?  Um, yeah!

Photo borrowed from www.marielook.com

Bright, fresh, and springy! Perfect scent for this time of year!

To kick things off, I’m so excited to share with you my first giveaway!  I will be giving away one (1) of Catherine’s amazing Pink Grapefruit candles to one lucky reader! All you need to do is leave a comment here and tell me which candle you would choose on Inspired Home‘s website.  They burn beautifully, and smell even better.  There is not one scent I haven’t fallen in love with!

Want extra chances to win?

Tweet about this giveaway and candle drive for one extra entry. (leave me a comment telling me you tweeted!)

Post on Facebook about the giveaway and candle drive…and make sure to “like” Jumping Waves and Inspired Home while you’re there! (leave a comment and tell me you posted this on Facebook)

You can even Pin Catherine’s candles on Pinterest, if your heart so desires.  Yup, one extra entry for that! (leave another comment telling me you pinned it!)

Help spread the word about Jumping Waves and Inspired Home’s love for philanthropy!  We are so grateful to you.

The giveaway will end on Friday night at 10:00p.m. Pacific Time and I will choose a winner at random.  Now go on…start shouting from the rooftops!

I should mention that this wouldn’t even be possible if I didn’t have an awesome trainer, Brandon.  He’s been with me for almost 2 years now and he has stood by me through all the crap that’s gone on with Emma.  He’s pushed me when I needed (or present tense: need) pushing, and backed off when I needed that too.  He always delivers a great work out, and he’s just as motivated as I am to help get this extra weight off.  If you’re in the North Scottsdale area looking for a great trainer and a wonderful small private-owned gym, please go visit Premier Fitness Systems and tell them Jessica sent you!

I’m sure you’re all wondering how Emma is doing.  She’s definitely improving.  Not without some hard work on our part (yes, parents are usually the ones that need to do the hard work when it comes to behavior modification).  We have hired a behavior analyst (specialist?) to come to the house every other week and work on creating behavior modification systems to apply within the house.  She’s got one that clearly works for her in the school…and we needed to create one to mirror that at home.  With Carey’s help, we’ve got a great token economy in place as well as other tools that help Emma specifically.  It’s a topic that has interested me and challenged me at the same time.  And it’s brought out my creative juices.  My teacher instincts come back in full force as I create daily routines and interchangeable calendars.  It’s really a topic that deserves its own post.  There’s a lot to it.

Get this.  GET THIS.  Unbeknownst (I had to look up the spelling on that one) to me, the “special seat” I had asked the driver to put Mason in was RIGHT NEXT TO THE BULLY.  SAME SEAT.  I didn’t know this at the time, because I didn’t know what bully looked like.  But Mason got off the bus in the afternoon and I asked him about his day and the bus rides.  And he confirmed that it was the bully he sat next to in the morning.  Can you believe it?

Here’s how it went down.  Mason was going to get on the school bus, and was totally fine.  On his way up the stairs, he started freaking out and started running back home.  I ran after him, talked to him and he was nervous about the bully.  Apparently the bully was right there, peeping over the seat and gave Mason quite a look.  I talked to him and told him nothing would happen to him.  I walked with him to the bus, and I got halfway on (as not to embarrass Mason) and asked the bus driver if there was a “special seat” just for Mason.  And that’s when he put Mason RIGHT NEXT to the bully.

I’m sorry.  Where is this lack of communication coming from?  Apparently we’re not all on the same page.  And apparently some of us are not the sharpest tools in the shed.  Who does that?

That afternoon, right after we got home, I called the principal.  We chatted and she said that was completely unacceptable and that she would be calling the trans. director immediately.  I assured her that if I needed to contact someone on my end, I was perfectly happy to do so.  And I told her that Mason wouldn’t be bullied off of the school bus.  That this kid needed to be kicked off before Mason would stop riding it.  She assured me she’d take care of it.

So now I wait and see what happens.  Do I say something to the bus driver this morning?  I don’t want to cause more anxiety or embarrassment for Mason, but I gotta stick up for my kid when <obviously> the bus driver won’t.  Do I spell it out for him?  I’m at a loss for what to do this morning.  And unfortunately Brett is out of town, otherwise he’d be dealing with it for me.  I’m not a good confrontational person.  That’s why I hire advocates and attorneys.  Just kidding.  <kind of>

I talked Mason through it.  Told him that nothing like that would ever happen to him.  This kid was a bully and he was picking on Mason.  I calmed Mason down.  I took all the information that he remembered and wrote it down.  And then I had to just think about it.  I had to process it in my own head.  I’m not sure what my deal is, but I can’t process events like that quickly.  It takes time for things like this to sink in.  We went about our day with homework and baths, the same routine.  In the evening, I was able to sit down with  the piece of paper that had the details.  And I started writing.  I emailed the teacher, principal, director of transportation, and cc’d my advocate for good measure.  I knew they would take this very seriously, and I needed them to know that we were taking this very seriously.

I got an email from the principal that night reassuring me that they would be looking into this.  Come Friday, I found out that the principal talked to Mason (who was definitely a bit nervous going into the principal’s office!) and Mason pointed the boy out, and watched video of the school bus.  Side note- so happy they have video on school buses now, but how sad that it’s come to that, right? Mason was sitting in the front of the school bus so we actually couldn’t see him or the boy in the video.  She did mention that she saw other disturbing things on the video…standing up, switching seats, throwing things, etc.  I’m glad she saw this as our bus driver isn’t as strict as I would like to see him.

The director of transportation emailed later on Friday and said that he spoke with the bus driver who didn’t hear anything.  And also corrected any behaviors that don’t fall in place with transportation procedures.  I certainly hope so.

I emailed the principal again today to follow up.  I asked if the boy in question had been called to speak with her, questioned about the incident, or confessed to anything.  I am awaiting a response.

I hate bullying.  I severely dislike bullies.  They make me mad.  No one has the right to make my child/children feel scared or threatened.  And it’s important to me, for Mason, that he sees that negative behaviors will yield negative consequences.  I’m so proud of Mason for telling me what happened.  And very proud of how brave he was to talk to the principal.  Our principal is wonderful, as is Mason’s teacher.  However, for a 5 year old, the principal’s office can be daunting!

Just last night, we had date night and we were supposed to go to sushi, which is such an easy and healthy choice for me.  But hubby got home late and sitter had to leave early, so therefore we went to our favorite BBQ place, Bryan’s Black Mountain BBQ.  On a side note, I don’t even like BBQ, but this place is ah-mazing.  I had them cater Brett’s big 40th bash last year and it was a huge success.  Anyhoo. What would I get at the BBQ that was decent?  My same thing…minus the bun and fries.  I had beef brisket with no bun.  And a small side of their ah-mazing olive coleslaw.  I figured that was healthier then having fries, baked beans, or potato salad.  And this was maybe ⅓ cup.  Nothing huge.  Oh, and I munched on a  few fries.  Because, like everything else there, their fries are ah-mazing. I left feeling completely satisfied and not at all stuffed.  Oh, and the biggest shocker (even more-so then not eating fries), was that Brett and Eric got their ah-mazing ice cream sandwiches and I didn’t even have a slice.  Not. One. Bite.

I tell ya what, it’s weird what’s going on.  My metabolism has changed.  My taste buds have changed.  Sugar doesn’t make me go gaga like it used to.  Becky brought over Clemmy’s ice cream last weekend and I even said no to that. And with those stories….I bring you my weight loss for the past week…..drumroll…….. 4 POUNDS!!!  I couldn’t be more thrilled!  I am in it to win it!

1/9: 3 pounds

1/16: 4 pounds

1/23: 5 pounds

1/30: 4 pounds

TOTAL: 16 pounds

This week I’m having to be even more on track with food.  On Monday I had 2 moles “margin punched” because they came back abnormal (see your dermatologist annually, folks) and one was moderate.  That means that I needed stitches and therefore I can’t work out for a week. So my food choices become much more important!  Until next week…

Last week we took Emma to see a peds dermatologist at PCH to take a peek at a mole she’s had since birth.  He gave us good news in that it didn’t need to be removed.  We were thankful, because removing this mole meant general anesthesia for her.  And that’s always tricky with her.  Anyway, he gave us changes to monitor, should they occur.  And then he was very direct and said that we’d be able to closely monitor the mole as she would be living with us indefinitely.

It’s a tough pill to swallow.

Our daughter will live with us indefinitely.  Chances for marriage are slim.  Chances for children are slimmer.  She may not carry a full time job.  Or go to college.  I’m of the philosophy “never say never”, but I’m also realistic.  I don’t need to jade myself into what may be.  Because truthfully I don’t know.  But like I said, I’m realistic.

We’ve thought about the future in that we know where we want to live.  We’d like to buy my parents house and give it a facelift.  There’s a great backyard.  It’s a nice size.  Big enough to build a little guest house back there.  That would be for Emma.  It’s what I think about.

I really didn’t think there was a special education department more screwed up than ours.  I was wrong.

Please take a few minutes and read Krystal and her son’s story.  It’s a story that’s becoming all too familiar.  Don’t you think?