Change

    In my last post I mentioned that my uncle passed away over the summer.
    My side of the family is Very small: just me, my mom, my aunt (who is actually my cousin's step-mom.  Their mom died 10 years ago from alcoholism) and uncle and two cousins.
    I got a call early one morning, my oldest cousin was hysterical as she told me that her step-mom just called and said her dad had passed away.
    I had the unpleasant task of driving to my mom's apartment and telling her the news.  Her only brother--only sibling for that matter.  The only guy in our family.  The only other person from her generation.  I knew the next few days were going to be long.
    Mom took it hard at first, but was able to settle down rather quickly, and for that I was thankful.
    I found myself being the rock for my small, grieving family over the next week. It was a role I didn't mind playing.  Yes, my family is small--but small doesn't always mean close.  I loved my uncle, but our relationship was an interesting one.  When I was small, I was terrified of him (not really sure why, he just made me feel off kilter).  When I got older, I felt I had to earn his respect.  Then, over the past 5 years we had slowly created a good relationship.
    He had actually come down for my birthday last spring and he and I spent the day together and then we had a cookout at the house.  That was one of my last memories of him, and I'm thankful it was a positive one.  So many of my experiences with him over the years were full of drama, half-truths, and unnecessary conflict.
    I had no idea that I'd be affected so deeply by my cousin's phone call about and my mom's reaction to his passing.  I found myself reliving those conversations over the weeks that followed his death and it was hard.  A even talked about missing him and was sad that he would never get to see her ride her bike without training wheels.  When we first told the kids, A was so sad--I must say I wasn't expecting that.  Sure she knew him, and had memories of him, but her reaction still caught me off guard.  Thankfully Bug is too small to really understand, watching A deal with it was hard enough for me.
    Yes, I miss my uncle and I am convinced the world will not be the same without him, but I have the comfort of knowing that in the end our relationship was as good as it could have been.  The family dynamic has certainly been altered tremendously and will never be the same, but we'll figure it out and we'll make it work.

  ~Alexis

The Optimist in Me

  Whew, so it's been about 7 months since I've blogged.  Of course there's a reason beyond "I just didn't make time" and there's no doubt those issues will be scattered throughout future posts.
  For now, however, I would love to give a "brief" overview.
  Are ya ready?  Good, 'cause here we go:  Hubby was laid off 6 months ago.  A started kindergarten.  Our computer had a virus and while a friend had it to look at and hopefully fix it, their house was broken into and our laptop was among the items stolen (it had most of Bug's baby pictures on it and most of the book I had started writing).  I started an SPD support group.  My only biological uncle passed away unexpectedly in August.  My mom got evicted from her apartment.  A's SPD meltdowns have skyrocketed and she started eliminating foods that she deemed acceptable to eat (it was already a limited list, to begin with).  I started a business with a company called Celebrating Home.  Hubby and I started cleaning our congregation's Church house. Hubby got a job after being laid off for 6 months, but his new job is rather demanding time-wise.  One of my cousins is expecting and now has to deal with the recent loss of her dad (my cousins lost their mom about 10 years ago).  My depression has flared up off and on, and so has the anxiety.
  Well, I think that's about everything.
  Looking over that list it's hard to believe it all occurred in 6 months!
  There were certainly times when I felt like things couldn't get any worse.  There were times when I wasn't stressed and I thought I should be.  There were times when all I wanted to do was sleep!
  I find myself counting my blessings frequently.  When my uncle passed away I was glad that financial stress was all we had to deal with.
  When A has her meltdowns now, I can look back and remember a time in her life when the meltdowns were worse and I was at a loss and had no strategies to help us through them.
  When I think about the sentimental things we lost on the computer, I remind myself that one day--in eternity-- they won't matter, so I try not to focus on that.
  We have several means of income and while they're not ideal, they're what we have and we're thankful for that.
  So, while things aren't exactly what we would have chosen, we have each other, we have our health and we have an amazing support group and for that we will forever be grateful!
  It seems that I can over come my natural "instinct" for negative thinking--it takes a bit of work and a change in perspective--but it is possible.
  Yay!

  ~Alexis

OT Evaluation, oh the emotions!

  So today was the big day. A had her evaluation with an occupational therapist. It went really well, but not as I expected.
  I was ready to schedule at least 3 months of OT, get some answers, feel validated and have a "diagnosis" (SPD is still not a diagnosis, but they're working on getting it recognized as such).

  As it was I got answers...and that was "all." The OT (Kathy) was great. I feel like she did her job well, even though the outcome wasn't what I initially wanted.

  Basically A does have some sensory sensitivities. Kathy showed me how to do the Wilbarger skin brushing technique with A. I will take 3 minutes or so (perhaps longer since Bug decided he wants me to do it with him too!) to use a special brush and brush the skin on A's arms, hands, back, legs and feet. I will follow that by doing joint compressions on her wrists, elbows, shoulders, ankles, knees and hips. Essentially this will help desensitize her skin and her over responsivity.
  We should notice that A's tolerance for tags, shoes, socks and having her hair combed will be much greater. Yay!
  Another thing that has been driving me and my husband crazy is A's inability to keep her chair still at the dinner table. She tips it on its side legs constantly and is up and down and all over the place in it.    Kathy pointed out that when someone who is sensitive to where her body is in space isn't able to put her feet flat on a firm surface while sitting, it's really very unsettling for her.
  The solution: a step/foot stool to rest her feet on! So simple and yet so wonderful!
  Kathy even addressed A's picking tendencies. Of course it makes sense that they're sensory related! 
  The places A picks at are the nape of her neck and her upper arms. Those are places that are frequently tickled (which is a negative sensation to A) by little hairs, shirt sleeves, or even collars.  Hopefully the Wilbarger brushing will help that too.
  We've already come a long way on our own, and I am very confident in saying that A would definitely qualify for therapy if we hadn't parented her the way we have. However, since we've covered so much ground over the past few years, Kathy was pretty sure that A more than likely won't qualify.
  At first I was crushed! There are enough people in my life right now who are wonderful people, but who just don't see the SPD. They either don't see the meltdowns or they think firmer parenting on my end would help. I have found myself feeling a bit isolated lately because I know SPD is right! I feel the need to make everyone see it so they can be on my side.
  I started thinking about getting a second opinion.
  Then reality started to set it.
  First of all this evaluation wasn't a ton of fun for A. Sure she got to play and loved that, but there was also work involved. There were questions to be answered and things to trace, draw and cut. Why would I want to make her go through that again?
  Then there's the fact that no matter where we go, the tests will all be the same and will be scored the same way.
  Then I started questioning my true motive. Why did I desperately want my child to be in therapy?    
  Apart from the fact that I truly thought she'd benefit from it, I was hopeful that once I had a doctor and an occupational therapist supporting me those who were doubtful would see that it's not all in my head. I would feel validated.
  Unfortunately the tests didn't show what I've gone through over the past 5 years with A. If she actually tested and qualified for OT, though, it would prove that what I've endured and slogged through was real. It would show that it wasn't bad parenting or a difficult kid or a mommy who couldn't handle stress, after all.
  How selfish is that?!
  So I changed my point of view. I am a mommy. My job is doing what's best for my family and right now that means doing what's best for A.   Is pushing for another evaluation (especially one that would probably end up the same way) going to benefit her? No. It's not fair to A.
  When I listen to reason I can see that I did get validation--Kathy acknowledged that there are sensory issues and gave me some strategies to deal with them. She gave me her personal cell phone number and e-mail address so I can talk to her when/if something else crops up.
  If there are people who don't buy into it, they wouldn't have "bought" it even if A needed OT and had a diagnosis.
  And, A got the right amount of help she needed. We'll do the skin brushing and joint compressions. We'll get her a step stool. I'll keep reading and learning. We'll make special adjustments when needed.
  We're in a good place. I won't mess with that (and yes, I will definitely be keeping this post handy to remind myself of my non-meddling clause I just established).

  ~Alexis

Books, books, books!

I went to a used book store today and boy did I have a great time!
I was looking through the parenting section for a few SPD books I wanted. Even though I didn't find the two books I was looking for, I did find six others that sound good.
None of them deal with SPD, but it certainly won't hurt to read them.
As I looked back through my stack I noticed a theme: self esteem. That's one thing I think A has lacked throughout her life (all 5 years of it). She used to act like a dog that got beaten all the time. When I would get onto her she would cower. I was not prone to yelling (neither is her daddy). And sure we spank, but we never used it to threaten her with and we barely had to use it as a form of discipline because she minded us so well.
Even now she still has a very obvious comfort zone when it comes to people. She doesn't like to ask certain people for something or even tell them things. Just recently she accidentally threw her plastic plate in the trash at lunch. She wanted to tell me, but refused to do it with her daddy listening. It was an accident! She wasn't even remotely close to getting in trouble and yet she would only tell me in private!
So many of A's behaviors can be attributed to her SPD, but there are also many things that would have been part of her even without the SPD. I'm pretty sure this is one of those things. She would just naturally have been more timid than other kiddos.
It's certainly something I think she's improving on. Used to she would only meltdown for me and was perfect around everyone else. On one hand, that's every parent's dream: everyone thinking your kid is a perfect angel. On the other hand, however, I wanted other people to see what I had to deal with! I wanted someone else to see how hard it was to parent A. There were many times during her meltdowns that I would be tempted to call my husband or best friend just to let them hear what I dealt with on a regular basis (there were a few times I actually made those calls)! I think that her new found boldness is a result of her becoming more confident and comfortable with who she is. Yay!
Unfortunately I am not a naturally optimistic person and depression runs rampant on both sides of her family tree, so teaching A optimism is not something that I will be able to model well for her. If I can change the way I think (something I've worked on in counseling) and thus help change the way Ava thinks then she's already years ahead of other people!
So today as I saw these titles about self esteem and raising positive, optimistic kids I just couldn't pass them up!
I want to be an advocate for A. I want to be able to be her voice when she is too young or too intimidated to be able to speak up for herself. I also want her to learn how to be an advocate for herself.
I'm looking forward to having a better outlook on life and now I have more motivation--it's not just for me, it's for A too!

  ~Alexis

Welcome to the world of SPD

  So a LOT of things have been happening lately.  Unfortunately my computer has been down, thankfully I just got it back.  It will probably take several posts to catch you all up...but I love to write, so that shouldn't be a problem.
  I'm going to take you back about three weeks ago. 
  I was struggling to understand A (which was pretty obvious in my last post).
  I had explored so many different possible diagnoses for her, and had yet to find anything that truly fit.  I was beginning to question whether there was something truly wrong.  Perhaps her meltdowns are within the realm of typical.  Maybe I'm just too high strung and need to chill...
  Then one night I was researching and digging because my gut kept telling me that A's behaviors are Not normal and that there's something else going on with her.
  Somehow I stumbled on a website for Sensory Processing Disorder (SPD).  I was blown away as I went down the checklists.  This FIT!  It explained everything I've gone through with A since she was an infant! 
  She was colicky, insisted on being held constantly, hated the vacuum (so much so that I had to hold her while I completed the chore, or wait until my husband got home to hold her for me), battled constipation, was a picky eater as she got older, didn't like getting her hands messy, couldn't stand it when I couldn't get ALL the sand off her feet after playing at the park.  She was content to swing for 45 minutes at the park and never do anything else.  She was terrified of slides, elevators and escalators.  She was unreasonable and illogical and had true meltdowns (not tantrums) almost on a daily basis.
  She had meltdowns when we washed her hair (the water couldn't come near her eyes OR her ears), she didn't like to hug friends and grandparents, she hated to be tickled.  She took FOR ever to go to sleep (I could rock her for an hour and she'd still be awake). 
  She couldn't stand to be called nicknames (to the point of melting down), she has an incredibly difficult time verbalizing what's upsetting her (her initial reaction is to yell--and she's 5 now!), she has a hard time figuring out where she hurts.
  She couldn't stand bumpy roads, tags in her shirts bothered her, she can't stand lumpy socks and there are many pairs of her shoes that she loves dearly but can't overcome her tactile sensitivities to wear them and that upsets her.
  SPD is a neurological disorder.  Basically a person's brain mistranslates different stimuli ranging from sound, movement, touch, taste, smell, sight and introception (the internal sense that one has to go to the bathroom or is hungry, etc.).  He is either under responsive, which causes him to seek out different stimuli (which can lead to autistic or ADHD type behaviors and even misdiagnosis), or she is over responsive and translates things as scary/painful/bad.
  There is no cure, but there are many strategies, therapies and even pieces of equipment available to help kids get what they need and respond appropriately to the world around them.
  Whew!  Are you overwhelmed yet?  Let me tell you from a momma who still battles depression occasionally and who is not very organized or structured I was relieved, but freaking out!
  Relief.  I had found answers!!  I wasn't a "bad parent" after all.  =)
  Then I went through a denial stage (it lasted about 2 days).  Is this really my kid?  It always seemed that almost as instantly as I'd ask this question, A was having a meltdown that proved that this was, in fact, the perfect fit.
  I went through a brief phase of guilt.  Sure I've done a LOT to make our lives as smooth as they are today (which is still rather rocky on a good day compared to "normal" kids), But I hate that she has to share a room.  Really for a kid with SPD sharing a room is not a good situation...but Bug and A are particularly bad roommates for each other.  He's noisy while he's going to sleep and loud when he wakes up in the morning.  He wakes up earlier than she does.  She's got some auditory sensitivities.  She likes Her space, which has to be monitored and limited since the room is both of theirs.  She likes Her stuff.
  Then I moved on to myself...I am NOT organized and I stink with structure.  Unfortunately A desperately needs structure in order to feel safe and in control.  My idea of structure was looked like  the world was spinning out of control to her.  And that level of structure was hard for me to attain!  Making sure I make the Same thing on the Same days every week for breakfast, remembering to start A's breakfast soundtrack on my iPod, having her set out her clothes for the next day the night before, and making sure she had approved clothing (read: tagless shirts and an extra pair of Bug's socks) to wear was (ok, IS) hard for me!
    I thought I was doing good to get her up at roughly the same time every morning, get her fed and make sure she got dressed and hair fixed for the day.
  Now I have to structure my days even more in order to ensure my child feels safe?
  I've got to be the worst person for this job!
  Then I got realistic. This is going to be hard. It will get better. It will never go away. God gave me A because He knew I could raise her well. God has also given me incredible resources (a great husband, an organized best friend, a supportive pediatrician) to use to help me and A get through this.
   And that's a brief overview of my life over the past month...and that's not even including Mom and her recent hospitalization!


  ~Alexis

The road so far

  Yesterday we had an almost meltdown.  It was amazing, especially when I know where it had potential to go only a few weeks ago.
  A sat down at the table to eat breakfast, but still had her Pull-Up on.  I reminded her that the rule is "no Pull-Ups at the table" which she adamantly refused to do.
  I took her bowl of cereal and put it up.
  When I asked her to go to her room to put on her underwear, her reasoning went as follows:
  A: "I can't."
  Me: "Why not?"
  A: "Because it's dark in my room."
  Me: (looking down the hallway to see if her room was, in fact, dark) "Honey, the light's on in there."
  A: "Well I think it's dark."
  Me: "You think it's dark."

  I reminded her that one reason we don't allow Pull-Ups at the table is because if she goes potty in it any more, it will leak.

   Her next excuse was "I'm cold."  I suggested she either put on some tights or her robe. She decided she was too cold to walk down the hallway to get anything to put on, so I offered to get her robe for her.  Her solution, "You go get my robe, and I can sit on it in case my Pull-Up leaks." 
  Great problem solving, kid.  Unfortunately, that's not what robes are for (unless, perhaps, we're out of clean towels).  I reminded her of that, which she didn't take well.
  Eventually she got her underwear on and we moved onto some other issue.  On the way to school it was something else.  After school she was a little better, but still pretty argumentative.

  As I write about this, I find myself chuckling.  It's just the way my life has gone for the past 3 years (once she started talking).  I used to get locked into these ridiculous arguments.  A few years ago I would have said "your room is Not dark--the light is on!"  Naturally a response like that would just cause her to escalate until she was in a full meltdown and I was left scratching my head in confusion and frustration.  Now I can acknowledge how she feels and move on (to another equally illogical "discussion"...but moving on is moving on!).

  I was thinking this morning about all the things A has overcome in the past 5 years.  Here are the top 4 things we've worked hard at not freaking out over.
  1)  Bumpy roads.  At the time this was a major issue Hubby and I had no idea what was causing A to meltdown.  Turns out now, at least a year after the fact, A can verbalize why she doesn't like coming home a certain way:  the road is bumpy.  She used to just get hysterical when we would use that particular route.  Now we can talk about the bumpy road, and very rarely does it even warrant a conversation any more.
  2)  Slides.  When we used to go to the park A only wanted to swing.  If there were no swings she might go climbing around, but when it came to slides, she was probably 3 before she'd go down them consistently.  She'd frequently sit at the top and cry before she backed up, turned around and refused to go down it.
  3)  Band-Aids.  Oh.  My.  Since she was such a cautious kid, A very rarely needed them, but there was one time when she fell at Church and her knee was really bleeding (she was 2 1/2).  She wouldn't stop looking at the blood, and that freaked her out, but when I'd ask if she wanted a princess Band-Aid she would get even more upset.  Finally I just put a Band-Aid on it.  You would have thought someone was killing her!! Really, words can't describe how upset she got.  I finally just pulled it right back off.  Oh, and we were in the van on our way home from Church (which is a 30 minute drive)--Hubby and I were about to go insane!  We finally stopped at a gas station so I could get her out of her car seat and settle her down.
  4)  Elevators.  There was no way we could step foot on an elevator without her melting down.  She got hysterical, even though I was holding her.  Thankfully we didn't use elevators often, but when we did it got ugly!

  I am happy to say that now that A is 5 those fears and anxieties that made us all miserable are no more (and probably have been non-existent for a year).  We can now go home using the bumpy-road-route without tears.  When A plays at the park she can go down any slide without a second thought.  She now asks for Band-Aids when there's no visible scratch (my new rule is that there has to be blood, or no Band-Aid, otherwise she'd have Band-Aids covering her body).  Now she loves to push the buttons on the elevator and can stand alone, without even holding anyone's hand!

  What an exhausting road we've travelled, but I must say it's incredibly rewarding to look back and see that these things are no longer issues.  And, really, the issues we have even now aren't as bad as those "top 4"  that plagued her when she was 2 (I could easily have made a top 10 list...but for brevity's sake, chose not to).


  ~Alexis

What is normal, really?

  I was talking to my uncle (my mom's brother) the other day and got to thinking..."wow!"
  If I really stop to think about my life it's easy for me to say "how did I turn out so normal?  I had no chance!"
  There are other times I think "did my childhood really happen?  It all seems so long ago and unreal."
  Then there are times like my conversation with Uncle the other day that I think "these people are for real?!" and it blows my mind that I'm even remotely in touch with reality.
  Mental problems manifest themselves in a variety of ways.  One of my husband's relatives has paranoid schizophrenia.  When she has an "episode" it's pretty obvious.  She talks in hushed tones, her eyes get shifty and she goes on and on about people going through her stuff, or that she knows people are talking about her.
  Then there's my mom.  Her mannerisms also change.  Anyone who pays attention to her can tell some thing's off, even if they don't know her.  Her actions speak louder than her words.  She does a pretty good job of keeping the irrational thoughts to herself (thankfully).
  Then there's my uncle.  There is no obvious change in his behavior.  His presentation is so convincing that if someone didn't have a firm grasp on reality, it'd be easy to get sucked into thinking what he says is true.
  Take our conversation the other day, for instance.
  He was talking about his cell phone.  He started out making complete sense, then he digressed and started talking about how "they" have bugged his phone.  Apparently he works for whoever "they" are.  He disabled the bugs, but left the tracking device in tact because it's important for "them" to know where he is at all times.
  My mother is convinced he's Jesus (as in God's son, not a Spanish kid), and Uncle has even commented that he's talked to a supreme being and knows things he shouldn't.
  Seriously???
  So let's recap, shall we? 
  My grandma (Mom and Uncle's mom) thought she was psychic and could see the future, she was convinced my cousins and I were princesses from the lost land of Atlantis, and she released souls that were stuck in the in-between.
  My mom is convinced my uncle (her brother) is Jesus.  She also thinks the people on TV can see into the room the TV is in.  She has had an affair with a famous person and has given acting advice to another very famous actor.  At one point in time she was convinced I was possessed and another time she put salt above the doorways to keep the demons away.
  Uncle apparently has also bought into the story about him being deity, also thinks himself to be a government agent of sorts (have you seen "A Beautiful Mind"?) and thinks he is invincible.
  I'm sorry, how am I sane?  I didn't have a chance!
  I am thoroughly convinced that the only reason I'm as well adjusted and normal as I am is because God (as in the God in Heaven...that the Bible talks about.  Not some bizarre-o god that walks around disguised as my uncle) had better plans for me.  Really, there is no other way.

  ~Alexis