Amazing how time flies. I didn't realize that I haven't been blogging. I officially put our "public" blog on hiatus. Too much with the girls to blog. I don't mind sharing, but with both in therapy, really want to reel in how much is out there about us. Here's a nutshell.....

---BigA's night terrors have subsided, thank goodness. Still having major sleep issues though. The neuro appt can't come soon enough.

---BigA's OT eval was done and we have lots to work on. VERY behind in self care for this age. Rather disappointed that OT didn't see the sensory things that I see here at home. Here we go again....feel like it's me and that I'm making it up. Hey even BoyScout accused me of this a few months ago. Boy that was an ugly fight. He thought I might have Munchausen by proxy syndrome. Sometimes it shows how *smart* he is...he didn't even really know what MBP was. *smerk*

---LilA's PT going ok. Her PT saw some new developments in her Torticollis that show she's still not symmetrical :(. Minor set back but still doing ok.

---LilA didn't get her Round B of 4 month shots. SensationalMama here having MAJOR mama intuition issues over here. Four days to be exact. I know BoyScout is tired of hearing me rant about it, but I can't put my finger on it. He did admit that my SensationalMama instinct has NEVER (don't say that much, but never!) has failed me, and if I have any issues and in my heart of hearts don't feel it's the right thing to do, then delay. And I did. And VERY glad I did. LilA running a fever. I'll post my rants about vaccines later. I will say that I am pro-vaccine. It's not a "NO" thing. I do think that 1) one size DOESN"T fit all and 2) there should be consideration given to parents with children with known dx that put them at a higher risk and with sibling b/c of known family history. Enough about that. I need to save something for a later post.

--BigA had one hellofa night. Not sure if she burned her fingers or if I scared the daylights out of her. She decided to reach and grab a carrot cube off the hot stovetop....Boy did I jump all over that one. THEN she decides to get the other half to her toddler bed rail (looks like a mini ladder if you turn it up and down) and act like she's going to climb up on the coffee table. Mind you, she can get on the coffee table without the help of the "ladder." Well, she busted and popped her chin on the, you guessed it, coffee table.

It's late and after 2.5 hours after getting up from my 'nap,' I still haven't gotten the dishes done yet. Dern computer....sucks the time right away from me. At least we got a few updates. More to follow.

A Loss, sort of

I think the biggest change I have noticed over the past year since BigA's dx is the loss of friendships, and I'll use the word friendly loosely. I have gained some wonderful moms who are experiencing the joys and tears that SPD brings into a family, but sadly, I have lost some friends. Why? I think mainly is the fact other "typical" moms (meaning moms of typical, developmentally on par kids) don't have a clue. Period. NO CLUE what moms of SPD kids go through. They don't understand the therapy, the tantrums, the brushing, the sadness that moms experience when the know their kids 'aren't typical.' The best way I can explain it is that there is a parallel world within this "real" one and there are all sorts of things that most mamas would never know existed unless you were pulled into this surreal world for any number of reasons. These mamas that I talk about are not in my world, and because they can't relate, they just don't. They don't ask, they don't

Don't get me wrong, I don't want BigA or LilA to just be normal...I want them to shine in their own way, but there is something very different when your child has been labeled or a professional recognizes significant delays in your child's growth. All this has made me a better person, and hopefully a better mom.

In the midst of tears for my child, I also grieve something else. I have lost some mama connections that were started when BigA was born. We gained some friends at Storytime at our local library, through Baby music class and at a local MOPS group. But all in all, we really don't do any of those things any more. MAYBE 2 friends from the beginning have stuck through until now. And again, I'll use "friends" loosely. And it hurts. Motherhood is such a wonderful yet trying time, that it's very natural to look to other mothers of children that are your kids' age(s) and BTDT mamas for support. Slowly the small circle I had really isn't one. I have leaned on my Boy Scout so much. I do need help and support. Having a SPD child is challenging. There are so many challenges that face a special needs child that you can't go at it alone.

We don't have family locally and it's both a blessing and curse. I'm glad they are not here. There is alot of family drama going on, and I love NOT being involved. I HATE what my sister is enduring but I could not live with the day-to-day stuff that is going on. Not having family near by also means going at it alone...no standby sitter to help when the going gets tough, or when you had a bad day and need to get a few minutes breather or like tonight...no extra company when my Boy Scout is traveling. Too they also don't see the day-to-day stuff that we're experiencing. Frankly, other than grandparents, Boy Scout's bother and my siblings and a few other friends, nobody know about LilA's therapy. I'll get in the specifics on another post, but what really hurt was when Yaya said if I wouldn't post about LilA's torticollis dx. I don't know if she was embarrassed if her second grandchild by me was the second one in therapy, or the fact something isn't right with either one of my kids, don't know but it hurt. Boy it stung. I don't know if Yaya knew what she was saying but it took my breath away. I didn't want to bring alot of attention to LilA b/c of it. I was going to generally blog about it (what it was, what we were doing, etc), but not put alot of focus on it.

I shouldn't let my mom dictate what I blog about and what I don't. I know. As I have gotten older (and maybe more miles between), our relationship has changed. I can tell you almost the exact date....May 16, 2004. I had just lost my first pregnancy, endured a painful D&C, and was having post-op complications. Earlier that day before I was rushed back to the ER b/c of a blood clot, Yaya said that I don't sound so happy and that I just need to get over this and move on. I'll never forget it. I didn't talk to her for 6 weeks after that. I just couldn't. I also had alot of other personally things going on, and the miscarriage was just last straw.

I love my mom. Don't get me wrong. She just can't relate then and she can't relate to having two kids, one with SPD and one with torticollis. Trust me, the mama guilt on this one rides SO STINKING high it's not funny. Two tries and parenthood, and I'm batting 0. I've mentioned it before, it's not like I want cookie cutter kids, but the last thing I want for them is to have them behind the 8 ball. They deserve the very best, and they are getting that from their Sensational Mama and Boy Scout daddy.

Wow, I didn't expect to go there tonight. I was merely thinking of the 'friends' we no longer do anything with. I do miss them, but I wish they could be more sympathic to where I am in this journey. I want to talk about it and share, but they don't ask. And that's one thing I have learned....don't share too much. Leave something on the table. If they want more, giv 'em a bit more but again, not too much. I seem to have become the MomsGroup resident expert on early intervention, delayed speech, developmental delays, Developmental Pediatrician, delayed vaccines, SPD and now torticollis. Although 70 of the mamas really don't know what to do or expect when it comes to me, I have had 4 other mamas come to me in confidence concerned for their lil one. And I have been in their shoes. Maybe not the exact situation, but now I can share BigA's story and give them some resources, referrals and more importantly, friendship and caring mama to know they are not alone. Because your kiddo having SPD can really make you feel alone and that you are the only one experiencing it.

Lots on my mind today

It's never a great day when my Boy Scout (Daddy) is traveling. He's headed to AL for work and will be home Thursday morning. Errr....We miss him, but I also miss his help with BigA and LilA in the evenings. Guess I will fend for myself.

Today was LilA's 4 month check up. She's still growing like BigA did...above the curve. She's almost 17 lbs (95%tile) and 26.5 lbs (100%!!!). She also got two shots. I learned from BigA that I am not going to do all the shots at once. Nine shots in 5 vaccines...that's alot of vaccines. I know there is a huge debate about kids and vaccines. I'll post more on my view, but in a nut shell, I understand the need to vaccine, but kids are not a one size fits all, so why are vaccines. Too, I do believe the parents should have more of a role in the vaccine schedule and not b/c the government says too. Granted MOST kids tolerate shots ok, but there is a group---BigA falls into that group and LilA b/c of "family history"----that are not typical and can't be placed in the lump sum category. Now Dr. W has given me LOTS of grief about how I choose to vaccine (again, another blog), but today I was shocked and pleased to hear he's not going to push the H1N1 (Swine Flu) vaccine on me. He said that kids with neurological disorders are at a higher risk and that BigA is a no and wouldn't give it to LilA, again, b/c of family history. WOW...talk about a small sign from Heaven!

LilA has been crying all afternoon after her shots. If she doesn't have a bottle in her mouth, she's screaming b/c of it. NOT FUN. She did this after her last round, and ironically, she only got one injection in her leg. The other vaccine was an oral one. She finally cried herself to sleep, poor soul. I hope this afternoon goes better for her...and for me.

Another day in paradise. Well, our version at least. We live in Florida and grateful to be back. We lived out west for a few year because of Daddy's job, and luckily it was Daddy's job that brought us back!

I sit, hoping that now I *finally* get BigA down for her nap, that LilA will nap a few more minutes. Here are my thoughts...

We got back from LilA's EI meeting. I hate to say its routine, but having been through EI before with BigA, I know what to expect. I was surprised to hear they are about 5 weeks from booking evals. Wow....lots can happen in five weeks. At least in FL, kids with Torticollis are at risk for developmental delays, so I am hoping to catch it early with LilA and get her the services she might need. You thought this was about living with SPD. Well, it is. Right now, I do have tort on the brain b/c of LilA today. Trust me, I have plenty to blog about regarding SPD.

I am rather new at all the facebook and twitter stuff. Check me at out @sensationalmama on twitter. Even though I am in marketing, I really don't get all the new techie stuff out there. I hate to call myself old school, but I guess I am. I'm not old...just an older mother, if you call mid 30s old.

We start school next week for BigA. WOO HOO! I do love having her home, but I'll be honest, I'm having a challenging time getting BigA's sensory needs met, while trying to meet LilA's physical therapy needs. Frankly, I'm failing at both. I'm probably not, but I feel like I am. I had all these great things to do for BigA and only, hmmm, maybe 3 have been checked off our list. You know, it's not about what you do to get to the end, but how you enjoyed the ride, right? Well, parts of this summer I can say I haven't enjoyed. So I think for all of us, it will be a good thing.

You put your 2yo in school? It's daycare, right? Nope. BigA goes to a fantastic ESE preschool. What's ESE? Exceptional Student Education. Florida School language for special needs. I love this program....they offer all the therapy services on site, while ESE teachers are working with basic early childhood concepts. It's a part of the local school district here, so yes, BigA goes to school. I miss her dearly, but they can offer her so much more than I could, not to mention the socialization and independence she's gaining. At first I was upset, but quickly realized, it's not about me...this is about BigA and what's best for her.

She can stay at school until she's 6, or when she advances out of the program. Right now, she continues to have more than a 25% delay in her language (thank you, SPD) and that's the main reason she has an IFSP and qualifies for this school program. Enough about school...that starts next week. Let me enjoy the few days I have left with BigA at home with me.

Would love to chat more, but LilA really is ready to get up from her nap. Let me get her before she wakes up BigA, who just went to sleep....Such is life!!

I am not the first and definitely won't be the last. My name is Sensational Mama and I have two Sensational Kids. Ok, one Sensational Kid and one terrific baby! Why am I so sensational? I am sensational because my first child has Sensory Processing Disorder. A book that changed my life---Sensational Kids by Lucy Jane Miller---calls these precious sensory children--and adults--who suffer from this condition "sensational." When Dr. Miller signed my copy of her book, she signed it to a "sensational" mama. And you know, I am pretty darn sensational. Not in that sense, but to learn, to laugh, to cry, to hold and to grow with my precious Big A as she, hmm, we learn more about SPD and how it impacts her life.

Little A just joined our family a few months back. I say she's a terrific kid because we don't know (yet) if she's a sensational child or not. It's too early to officially diagnose it, but there are things Little A does that Big A used to do at this stage and it makes me nervous. Why would I be nervous about Little A having SPD? Because of the tears, heartache and frankly the expense that we have incurred. Unfortunately our insurance doesn't view SPD as a "real" diagnosis, so they won't cover it any of her occupational therapy. And they won't cover her speech therapy either. Said she'll get speech WHEN SHE'S 3 in school, so they won't cover it now. Sure, let my child be a delayed talker AND behavioral issue child and a burden on the school system so insurance won't have to pay for it. Sure, that makes alot of sense. Don't get me started on insurance. We still haven't "paid for" Little A yet and even some of her claims and my delivery claims are being denied. Really, I can go on a tangent about insurance.

I have another blog. It's my "normal looking family" blog. Granted I can't speak for the other thousands of families that their kids have SPD, but I can say that with Big A's diagnosis, I have found myself in a parallel universe that although we live in the "real world" there is a whole other side of life, consisting of therapy, doctor's appointments, tests, etc, that most typical families never have to experience. Little A gave me another taste of that alter universe when she was born and went to the NICU and now with her torticollis dx.