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

Insane weekend

  I was really looking forward to this past weekend.  It had so much potential.
  One of my best friends and his wife (we'll call them the K family) were going to be visiting my hometown (which is only 2 hours away from where I live now).  A year ago they moved about 12 and a half hours away, then they had their first baby who is now 6 months old and I hadn't met her before this weekend.  I was really looking forward to spending time with all of them.
  The plan was for us to leave as soon as Hubby got home from work on Friday.  I was hoping that would be around 2 and that the kids could sleep/rest on the drive up.  Hubby got home around 2:30.  I ran a quick errand with Bug and he came home and fell asleep in my lap.  Hubby wanted a few minutes to pack and chill, so I put Bug in bed.  He slept for an hour.
  We got on the road an hour and a half later than I planned...but that was ok.  I was excited about the weekend!
  On the way A started looking sickish and actually took a nap.  Never a good sign.
  We got into town around 5.  Then we drove from the north side of town to the south side...in rush hour traffic.  With two bored, whiny, getting-over-being-sick-kids.  I planned to hang out with the K family from 4-10ish.  It was  now 5:30 and we were still 45 minutes away from seeing them.  Bleh.
  We checked into the hotel and walked into our room.  One of the queen beds was neatly made.  The other had covers strewn everywhere and pillows all askew.  There were dirty dishes on the table and a take-out box on top of the TV.  Excellent.
  Hubby called the front desk and we got a new room.  We dropped a few things off and I got a drink of water.  That's when I noticed a cute baby roach crawling across the bathroom counter (I hope you read that with heavy sarcasm).
  We met our friends for dinner and baby K sat in her car seat the entire time.  She was awake, but completely content being where she was.  After dinner I took Hubby back to the hotel because he wasn't feeling well and on the way Bug threw up.  I ended up dropping the boys off and then A and I headed over to hang out with the K family.
  By the time we got to my friend's parents house baby K was in bed (it was like 8:30 by this time).  I hadn't gotten to hold her and we didn't have plans to spend any more time with them.
  We did have a really good visit and I was thankful for our time together.  A and I headed back to the hotel around 10.
  None of us slept well.  Hubby didn't get to sleep until 5am.  Bug was restless and fussy throughout the night.  There were several high school boys' basketball teams staying in our hallway and the boys were in and out all night and were not quiet.
  Bug was up early so I took him to the continental breakfast (which was really good, thankfully) and then he and I went to Wal-Mart to get Hubby some meds.  Bug was in his PJs for that outing because I didn't want to risk waking A and Hubby up while he got dressed (we all know he's incapable of being quiet).
  I decided we were going home.  We hadn't been in town for 24 hours, but I knew my family needed to get home.
  Bug and I got back and Hubby actually felt like going to Best Buy for a bit by himself.  Check out at the hotel wasn't until noon so I decided to keep the kids at the hotel until then. 
  I soon found out that one of the best parts of staying at a hotel that doesn't have an indoor pool to occupy small children is jumping on the beds.  The kids were having a blast.  A very Loud blast.  They were rolling and wrestling and jumping and squealing.  When I tried separating them in hopes of quieting things down they just cried and whined Loudly about being apart.  It was a lose-lose situation so I did what any mother would do.  I threw them together on the same bed and then lost my patience.  At least some of us were having fun.
  I made lunch plans with the K family so we could see them one last time before we left and this time I actually got to hold the baby, so all was not lost.
  On the way home A wasn't feeling good, Hubby had me drive (which Never happens!) and slept the whole way and Bug conked out too.
  To top it all off, the next day at Church Bug slammed his head back into my mouth and gave me a fat lip.  Thanks kid.
  Whew!  And that was my weekend.

  ~Alexis

The case of the terrifying DVD player

  The other day Bug decided he wanted to watch "How to Train Your Dragon" (HTYD), his new favorite movie.  
  The first kink in "mission: watch HTYD" went as follows: We always watch movies in the living room...because that's where the DVD player is--well, was.  On Black Friday the Hubby decided to buy himself an early birthday present: an XBox 360.  Naturally he hooked it up to the TV in the living room.  I kindly had him move the DVD player into the family room so he could play and I could watch DVDs on a TV, not the laptop.
  It took me a few minutes to convince Bug that the family room was where we were going to watch the movie.  Of course, at first he was very adamant (in his loud, Bug way) that this was not where we watch anything.
  After settling that issue, the second kink came into play and it went something like this:
  I turned the TV on, but had left the DVD in the living room (silly me was not anticipating so much of an issue just relocating him).  I left Bug for 3 seconds to get the movie, and then I spent the next hour trying to right my wrong.
  You see, when the TV came on so did that interesting thing we call "static" or "snow."  And apparently that completely freaked Bug out.  He ran after me screaming and crying hysterically and insisting that I hold him.  I put the movie in and tried to explain that everything was ok in a way that a 2 year old would understand.
  Naturally, that wasn't good enough for Bug and he insisted that I hold him while he watched the movie--a movie he's been able to watch by himself for at least a month now.  He was now terrified of the DVD player and that fear affected his ability to play by himself part of the morning too.  Yay.
  That was a few days ago, and thankfully now the fear factor has been taken down a few notches.  It hasn't been forgotten, oh no.  Every time Bug walks past the DVD player, or watches a movie in the family room he has to have a conversation about how it scared him.
  There are times when I think it'd be nice to wrap my kids in bubble wrap and try to hide them away from all the scary, nasty things in this world.  Thankfully I'm sane and realize how impossible that is.  Really, though, who would have thought that DVD players would have fallen into the "scary" category?  Obviously I wouldn't have...until now.  Who knew?
  And that is the story of my life: daily encounters with the terrifying!  My kids must think I'm the bravest person on the earth, and I'm ok with that.
 
  ~Alexis

Blessings in disguise

  My newest revelation occurred during one of my conversations with my best friend.  Really, it seems that most of my "ah ha" moments occur during my conversations with her.  We have a lot of great talks.
  Anyway, we were discussing my daughter's wonderful behaviors.  Again, A has always been the kid who acts perfect around everyone.  She obeys the rules, says "yes ma'am," "please," and "thank you."  She's that way with everyone but me.  It's not like she's got multiple personality disorder or even that she's acting bratty.  She's just being A, uncensored.  What I see is raw emotion.
  Before I got my depression under control I thought "what have I done wrong?"  A would be hysterical with me, but when someone else would step in and do whatever I had been trying, A would respond calmly and settle down.
  Seeing that was hard for me for a long time.  I thought maybe I had "babied" A too much.  I thought if I had done something differently that my relationship with her would have been different.  I thought perhaps my insecurities as a mom had rubbed off on her and made her an insecure infant.  I had about a million of these self-blaming scripts that ran through my head.
  Then one day it started to click:  A felt more comfortable with me than any other person in her life.  She and I have a special bond.  She knows I love her unconditionally.
  Whoa!  What a compliment.
  However, really "getting it" was a process.  Sure, I "knew" this--but why was she prone to acting the way she did.  Surely I had done something wrong...
  Now, I'm glad to say that I think after 4 1/2 years it has finally sunk in.  A feels so confident in my love for her that she knows she can truly let her feelings show through and nothing will change between us.  It certainly doesn't make her behaviors easy to deal with, but now I know I didn't do anything wrong.  I also know that she really has reasons for acting the way she does.  She's highly emotional.  She's 4.  She's doing the best she can.  She's relying on me to teach her how to handle these intense feelings.
  Boy do I have a long road to hoe, but I know that there will be a confident, self-controlled young lady on the other end.
  The second part to this post is what I realized the other day.  I have always seen so much of me in A.  I can relate to a lot of her preferences because I felt the way she acts when I was a kid.  I just don't remember acting the way she does.  I always thought perhaps the reason my mom doesn't have any specific parenting tips to give me (other than the fact that I don't ask her) was because she just forgot how things were.
  A few memories came to mind, though, that helped shed a different light on things.  There are two times in my life that I can honestly remember (there are probably a few more than that, but not many) that I truly let loose and acted the way A acts with me.  In those instances, I remember being aware that Mom was close to the edge of "going crazy" (as I called her episodes), but I didn't care and just went ahead and threw a fit.
  Whoa...it hit me that I never had the solace that A has.  As a child my mother was never someone I could afford to let see me at my worst.  I knew that her love for me was conditional.  I couldn't lose that love, so I acted like an angel.
  I will say that my grandma gave me the closest thing I knew to unconditional love.  I wouldn't say that her love had strings attached, but she had mental problems of her own.  I don't think she would have loved me differently.  I do think she would have acted differently.  I learned early on what to say and what not to say.  Not for fear of making Grandma angry, but I knew that her response would have either confused me or taxed her mentally.  So, I censored myself around her too.
  The bright side of all of this is that the ability to cope with anxiety and depression seems to grow stronger from generation to generation.  Sure, I struggle with those disorders, but not like my mom and grandma.  Sure, A will be prone to depression and anxiety, but her arsenal will already have a few strategies in it that will help her deal with the issues she'll face.  Some of the strategies won't take any effort on her part because she and I have been working together on them since she was a toddler.  Some will take a conscious effort.  Then, there may be times she needs more help.  There may be times she needs to see a counselor regularly or take medication for a while.  And she'll grow up knowing that's ok.


  ~Alexis

Nerves of steel!

  Before Bug came along I had never thought I'd be the mommy in the grocery store leaving a cart of groceries behind, unpaid for.  However, once he got here and we discovered his temper and desire to be heard I figured one day I'd be that mommy.
  I must say I was caught off guard yesterday when A was the reason everyone was staring at us as I parked our cart with unpaid merchandise in it off to the side and we walked out of the store.
  Let me paint you a picture of how this very memorable event played out.
  Our day had been going great.  I had managed to get the three of us dressed and fed and out the door at 9:30--a major accomplishment in my world if we don't have anywhere we have to be.  We got to Wal-Mart and had done almost all of our shopping. 
  Naturally things went down hill from there.
  I have promised A I will make her a felt board and we were off to see what kind of felt Wal-Mart had to offer.  As we headed to the school supply aisle A was trying to use the package of Pull-Ups in our cart as a seat.  She couldn't get it "just right" and was getting frustrated.  She started whining, jumping (as much as she could in the cart) up and down.  Noticing her level of aggravation rising, I offered to help.  I did tell her that if we couldn't get it the way she wanted after I tried to help then the Pull-Ups were going under the basket.  Naturally we couldn't get it fixed so I put them "away" and I started to look at the felt.  A continued to carry on, crying and boo-hooing.  I stopped what I was doing and told her that I couldn't concentrate on what I was doing when she was being so loud.  I also told her that if she was going to carry on, we'd just leave.
  She kept on.
  We left.
  She got hysterical.  Like a typical moment at home--only this was in public.  Everyone was watching.  Usually she keeps all of her behaviors to herself when there are other people around, but this time she let loose!
  I calmly pushed the cart to the entrance.  All the while A was yelling, crying, kicking and begging to stay.  Everyone stopped to stare.  We even passed an older gentleman who scowled and pointed his finger at her!  I had to smile--I knew that would stick with her for a while.
  I left the cart by the garden center door and we walked out--A still showing herself.  It didn't help that it was raining outside and she was wearing Crocs.  Her feet got wet and that bothered her, so when we got in the van she was kicking her feet hysterically and one of her shoes flew into the front floorboard.  I got Bug (who was being very quiet) buckled in and off we went.
  Thankfully we only live 5 minutes from Wal-Mart--otherwise I might have cracked!
  On the way Bug decided he wanted a share of all this noise making and started yelling.  I just let him, in fact, I joined in.  Oh my did that make A angrier (which I didn't think was possible)!  She started screaming at the top of her lungs.  She was so loud I could feel my eardrums vibrating!  Keep in mind we were still in the van--very close quarters.
  When we got home I had her go to Mommy and Daddy's room and wait while I got Bug's snack ready. 
  I went in and talked to her--then she got a spanking with a belt. 
  I told her that after nap we had plans to go to Chick-Fil-A with her good friends (and my best friend), but that I wasn't sure I could take her.  I needed to know she could act appropriately in public.  Thankfully we had time for her to have snack, cool down and try Wal-Mart again.  I told her that if I wasn't able to get what I needed from the store then Bug could go to Chick-Fil-A, but that she'd have to stay here with me.  I also told her that if we went to Wal-Mart before nap and she acted inappropriately again that she'd have to stay here with me in the afternoon and Bug could go.
  She had snack.  She calmed down.  We tried Wal-Mart again (the cashier had put my cart aside for me) and that time was a success.
  When we got there the second time the greeter said "You look familiar" and I said "Yes, we're trying this again."
  As we left he smiled and said "that's much better."
  Like the older man who scowled I was thankful that the greeter made these comments.  I think it helped A realize that other people noticed and that she was acting pretty ugly.  It leaves a bigger impression if someone other than Mom comments on behaviors.
 
  When all was said and done I was really proud of myself for handling the situation the way I did.  Looking back I don't regret anything.  I didn't scream at her, I didn't spank her in the middle of Wal-Mart (spankings, I think, need to be done in private and not in the heat of the moment), I didn't threaten her (none of the "if you carry on, we're leaving"..."I meant it, one more peep and we're gone" etc),  and I didn't cave to what she wanted just to take the focus off of us.
  Over all, it was a  great learning experience.  For me and A.
  I must say I'm not looking forward to ever having to do that again, but I'm going to be a realist and anticipate it happening once more before the kids are too big to carry on like that.  And when that moment happens, I'll be ready to blog about it!


  ~Alexis