They just don’t get it

Having a child with special needs of any kind sometimes feels like being a part of a secret group.  You feel like you are constantly taking on people staring and silently judging you and your child.  They just don’t get it.  It is a lonely feeling when your child (who outwardly appears to be a "typical" toddler) is throwing a tantrum or being utterly defiant and no amount of scolding or coaxing is going to make her behave and do as you say when she has it in her head that she wants to do something or doesn’t want to do something.  Heck half the time I don’t know the best approach that will lead to her doing the closest to what I want with the most minimal fall out.  Do I pick this battle?  Is this lesson important? Do I appear to be a push over and just let her jump in the mud puddle when I have already told her expressly NO because we are leaving in 10 minutes and I don't want mud in my car or do I stand my ground and endure the tantrum that is sure to follow?  The screaming and flailing tantrum.  The stares I get because people are sure I must have slapped my child for her to act this way.  This may sound like typical toddler behavior but I promise it is AMPLIFIED.  When she is in that mindset she doesn’t care about the consequences, there is no such thing.  She is only in that moment.  That. Single. Moment. There is no later, or tomorrow, she doesn’t understand something that may happen later.  Everything is now.  You can't say "when we come back tomorrow we will bring your bike and you can play"  Tomorrow means nothing.  She may agree and calm down but then when she realizes you don't mean now and in her mind you have tricked her and are going back on your deal.  The deal we just made....10 seconds ago...that tomorrow we will do it.  We practice calming techniques.  Things that will keep that mindset at bay.  Ways to make sure we don't get into that headspace where she will just break down and possibly harm herself in the process.  She has pulled out clumps of hair.  Bitten herself to the point of bleeding.  My sweet, smart girl will flail and hit me and pull my hair.  I fear for the day I cannot restrain her myself.  When I can no longer put her in her 5 point harness seat and keep her there until she is calm.  I am sad and embarrassed to say that sometimes I get angry at her when she is being so defiant and I have to take her out of the situation and put her in her car seat when we are out in public.  But I am not actually mad at her, I am mad at how I feel people are judging me and it shortens my fuse.   Which is unfair.  We had this very thing happen a couple nights ago.  We were at my 12 year old son's football practice and she was playing with some other kids and these sweet little boys had brought their bikes and let her have a turn.  They were so sweet and sharing.  When it was time for their mother to put the bikes in her car, because practice was wrapping up, my daughter got on the bike and refused to get off.  The mom was trying to tell her it was time to put them away but she just wouldn't budge.  I had to physically remove her from the bike and then put her in her car seat to calm down because she was acting psycho over it.  She had had plenty of turns on the bike and we made a deal to bring her bike back with us the next time... but of course "next time" means NOTHING.  Afterwards I felt like everyone was looking at me and judging me especially since it sounded like I had punished her severely when in actuality I only removed her from the situation.  Then she calmed down because we had made the deal about bringing her bike next time and when it was time to pull out of the parking lot she lost it all over again... because I had surely tricked her by promising something that was not delivered immediately.   I know it sounds like absolute bull crap when I tell someone that my daughter has a genetic disorder that is predominantly behavioral in nature.  Yeah right, she is being a brat and you are making excuses for her.  I see it in their face.  They just don't get it.

She doesn't REALLY talk

Anyone who has ever had a child with a speech delay can feel me on this one.  Having to constantly explain to strangers, at the grocery store or playground that your child doesn't really talk.  No, she cannot tell you her name or how old she is.  Yes, I know all kids talk at their own pace, and yes, all mothers in the beginning are the only ones to understand what their child is saying, but this... well...this is something else entirely.  This is not refusal to talk or just "taking it all in" and being choosey with her words.  She doesn't really talk.  "Hi" is in her repertoire, so is "Bye" we have even mastered "mom", yeah we love to use that one like it is going out of style.  "Daddy" took a good bit longer, so did any recognizable term for her brother or sister.  Luckily, (and yes, I use that word ironically) because of her cleft we had early access to speech therapy.  The process of seeing if your child is behind enough to qualify is emotionally difficult to say the least.  On one hand, you want your child to have all the assistance available to them in order to get the ball rolling as early as possible.  On the other hand, having someone trained in the field, telling you that your child is in fact behind feels like a kick to the stomach, like ice in the gut.  It is such a roller coaster of emotions.  Wanting what is best for your amazing child and also wanting to not really face that they are not able to do things that other "typical" children of their age can do.  When they ask "can she do this", "does she do that" and you keep shaking your head "no" and sometimes even second guessing yourself "does she do that, I can't recall".  After going through the process and being granted speech therapy it did wind up being a relief knowing that we would have help and no, we were not crazy or attention seeking.  Someone would be giving us tools to help our daughter.  What an amazing difference these people made in our lives.  First, we learned some simple sign language.  That in and of itself was life changing, it totally opened up our world of communication.  Prior to sign everything was so frustrating.  Just knowing what she wanted to eat or drink or when she was done eating and wanted out of her high chair would end in horrible crying fits and quite often result in her banging her head on the floor or the back of her chair.  Sign was our lifeline.  It helped ease our way until some small words were able to be understood and used consistently.  Some therapy sessions were hard, trying to get a toddler to do anything she doesn't want to do when she doesn't feel like doing it can be frustrating.  Some weeks it seemed like we didn't accomplish much of anything but the homework we were given was invaluable.  Things to try with her that we never in a million years would have thought of on our own.  Even just the simple task of making her give us an answer, even if it is in sign language.  Not just taking her out of her highchair but asking her if she was ready to get out.  Things I didn't worry about at all with my other children.  Also, the simple task of narrating everything I was doing around her.  Adding words to my sentence I wouldn't have normally said.  "Do you want the  bright, big, red ball?"  Instead of just "Do you want the red ball?"  "Let's turn the light switch on" rather than just turning it on and moving on with life.  There were so many things we did all day long that were a learning opportunity for her.  At some point things started rolling down hill, picking up words daily, even though most were not pronounced correctly and might be difficult for anyone else to discern.  Finally, we reached age 3 where we had to transition into the school system's therapy.  Going through tests all over again to see if my child was behind enough to continue with the amazing work that was critical to her successful speech.

The tools we needed to continue to collect in order to help her be understood by teachers in her future or classmates.  In the end, she did qualify and is currently going in once a week (soon to be twice a week) in order to learn to pronounce words more clearly as well as add the endings to words that she often just leaves off.  Only time will tell what this will look like when she is actually in school at 5 but for now my husband and I are so grateful for the assistance to help our sweet, little girl to communicate with the world.   So if you are at the grocery store and a little girl excitedly tells you “Merry Christmas!” and it is February, just smile and tell her “Merry Christmas” back, it took a lot to get her this far!

May I introduce....

I feel the best place to start is from the beginning, or maybe I should say "Once upon a time"  because sometimes our life does seem a bit like a fairy tale...if by fairy tale you mean a "disconnected from reality" sort of feeling.  I hear other parents describe their struggles with their little ones and am constantly reminded about how different our struggles are.  Sometimes I forget for a little while that this is not the way "normal" families do things, then some toddler younger than my own will walk up and have a whole conversation with me and I remember.  But, that is not the beginning.  The beginning would be our sweet, third child's birth.  She came into the world not crying and kicking up a fuss but wide eyed and in an untroubled hush.  She just seemed to be taking it all in.  I remember being immediately worried because she was silent, but my husband, who hadn't left his new princess' side, was reassuring that everything was more than okay.  Our beautiful, new daughter couldn't be more perfect!  We continued to revel in the euphoric atmosphere that you can only experience after a healthy birth.  Smiles and congratulations all around!  Siblings waiting in anticipation to hold their new baby sister.  Her baby nurse was the first to discover something troubling about our perfect new addition.  She was born with a cleft soft palate.  Of course, as any new mother with access to the internet I immediately searched the condition and then quickly abandoned it all because I had found that knowing so little about it but being faced with so much information was actually scarier than just not knowing.  We made immediate appointments with our local cleft clinic and pediatrician and continued to enjoy our new bouncing baby.  Breastfeeding was immediately a challenge.  I still didn't know enough about her condition to actually understand yet how much her cleft played into this role but continued to try and try again.  She would get it, of course she would, my other children had no trouble latching once we got comfortable with each other.  We just had to be consistent.  Of course we soon learned that she was not going to get it.  Feelings of failure abounded.  I couldn't feed my child, such a basic need and I couldn't fulfill it.   Her first night I wanted her with me.  In her little clear bassinet provided by the hospital, in the middle of the night she stopped breathing.  Everything was so terrifying and we didn't know what was going on or why.  She stayed in the nursery and they learned that she was aspirating and it would cause her airway to be blocked.  So we propped her when ever we would lay her down and kept chugging forward.  I was too afraid to sleep with her in the room so we kept her in the nursery both nights.  On night two she still hadn't been able to latch on to eat anything.  A well meaning, but afraid I would reprimand her, nurse told me she was able to get her to take some of a bottle with formula in the middle of the night.  This calmed me to know she was not going to starve.  Then came the time to bring this amazing new life home...and we had absolutely no idea what we were doing!  We had two kids already and didn't ever imagine that a third would bring so many surprises and we were working with a whole new learning curve.  Her first night home I lay her in her basinet and before I could shut my eyes she had aspirated and needed her airway to be sucked out.  From then on, she slept with me.  We were not strangers to the family bed but usually not with an infant.  I just couldn't leave her.  Every car trip by our selves was a nightmare.  What if she aspirated while we were on the interstate?  Needless to say we invested in mirrors for the car and I really rarely drove anywhere just the two of us for a while.  We had to teach our older children (9 and 11 at the time) how to clear her airway in the car.  We had bulb syringes EVERYWHERE!  She would sit in her carseat in the bathroom while I showered so she was always just outside the curtain.   Hurrying to wash the shampoo out of my hair because I didn't want to have my head under the shower head too long.  Combating her aspirating was just one hurdle, we also went through a lot of trial and error with feeding.  We

wound up with multiple trips and tests to different doctors and clinics to find the right fit for our perfect girl to be able to eat.  Different tests to find out if she was just having trouble physically eating or was it something more serious.  Eating tired her out so much it would take an hour to just drink a bottle.  After so much heartache and sleeplessness we finally found a rhythm.  We found a bottle that worked for her and she began to thrive.  After weeks of losing weight we were finally thriving!  I believe she was 4 weeks old before she finally got back up to birth weight.  What a milestone that was!  Now if you are still reading along you should know that this was only the first stumbling block we came across.  We had no idea of the road ahead...  Through testing and doctor's visits we found that she was actually born with a genetic abnormality.  She has a microduplication called 16p13.11.  That is it.. it doesn't have a fancy name or an awareness month and ribbon.  Just 16p13.11.  What the hell does that mean?  We still don't exactly know.  There are any number of behavioral concerns we may have to face.  I can tell you we have already faced a few.  But this microduplication was not the top concern for us at the time.  At 10 months old she underwent cleft repair surgery.  The surgery went wonderful and her repair is beautiful.  You really cannot tell any longer by looking at it that it is all that different from anyone else's mouth.  Her recovery was rough going in the beginning but children are so resilient and she mastered it wonderfully.  We were a bit of a mess at times but I adapted the mantra that "I can only do what I can do right now"  I decided not to borrow tomorrow's problems and only focus on what we had going that day.   We have come so far since then and I have so many stories to tell.  I think I should end my intro here and I can focus more on the specifics of events up to our current point but to suffice it to say.  It continues to be a wild ride full of surprises!

No Fear

Our daughter pushes the limit constantly on what is considered acceptable play.  She is always jumping off of something or running as fast as she can with no regard for what is ahead.  She really seems to have no fear, with the exception of loud noises.   Things that used to make my toes cringe now don’t even make me look up from what I am doing.  In addition to this absence of fear she has a high tolerance for pain...probably  a fortunate combination when I think about it.  My husband and I were convinced by age 2 she was going to ruin her knees jumping off of things before she could turn 3.  A common saying in our house is “if you are going to act foolish you better learn to be tough”  ok, if I’m totally honest, the saying really goes “if you’re going to be stupid you better also be tough”.   She has the tough part covered.  Playing with her 12 year old brother is one of her favorite things!  They wrestle and tackle each other and I know this has attributed to her thick skin.  She doesn't fixated on pain or injury.  Every shot she has ever had she cries in the moment and the second it is over she is fine, tears dried and on to the next event, obligatory sucker in hand.  The absence of fear is most likely attributable to her genetic condition.  Her micro-duplication on 16p13.11 is mostly behavioral and this seems to be a factor.  While we have gotten used to her lack of fear there are times it is troubling,  like for instance,when she wants to jump from our kitchen island, or stick her head through a hotel balcony.  Or, my personal favorite, run as fast as she can away in a public place.  And it may be useful for me to point out that she can certainly outrun us. Not to be bad or mischievous, just because that seems like the most fun.  For this very reason she is often in a stroller or has on a backpack leash.  I remember thinking “the poor kids on those leashes”, now I proudly walk my daughter around the park or at one of her siblings sporting events leashed and even, to my mortification, crawling on the ground on occasion like a dog.  I couldn't care less about the side glances I get, because they have NO idea.  What seems outwardly if not cruel, certainly overprotective is really the only sane way we can be at a ballpark or in a crowd of people. Otherwise I couldn't even fathom taking her.  My child is strong willed, very strong willed.  More strong willed than most toddlers I have ever met.  It is not as simple as me telling her not to do something.  Actually very recently we discovered if I tell her why she shouldn't do something it has much more impact.  “Don’t jump off of that chair because you could fall and bleed and have to go to the doctor”. Just telling her not to jump because she could get hurt is not enough.  She needs to know how it all plays out.  Maybe it is because she isn't afraid of actually getting hurt, but the idea of bleeding and having to go to the doctor is a deterrent, at least usually.   We aren't actually afraid of the doctor either, good thing too since we see so much of them.  Nothing broken yet....fingers crossed!

Sleep? Ain't Nobody Got Time for That

Our daughter has had trouble falling asleep since birth.  Now once she is asleep she is out like a rock, I mean nothing wakes her.  She has never been one to get up in the middle of the night multiple time. You can move her and change her and everything and she will absolutely not wake up.  The trick is in falling asleep.  She can stay up til 1 in the morning some nights.  She has not taken naps since before she was two because she has such trouble going to sleep at night.  We have tried everything we can think of. Bedtime routines with a a bath and then a calming atmosphere, running her around until she is so worn out she surely couldn't keep her eyes open and every time she surprises us and is up after we have fallen asleep.  I have mentioned before that we co sleep.  This is another reason it works for us.  She will be up watching videos on the ipad and we are able to go to sleep and not worry about if she gets out of bed since she is right next to us.  Now before you start jumping up and down about screen time being the problem I can assure it is quite the opposite.  Screen time is literally the only thing that stops her long enough in order to be still enough to have a snowball's chance in haities to fall asleep.  Screen time is most certainly our friend at bedtime.  I remember the good ol' days of being able to take her for a ride in the car and she would fall asleep and we could take her inside and put her to bed.  Then those rides started getting longer and longer.  We had to pick back-roads that would be boring and didn't have many chances for lit up signs (especially a certain restaurant with golden arches).  Eventually those rides started going for longer than an hour with her still awake and we realized that this avenue of sleep coercion was not going to work any more.  Our bedtime routine now consists of going to the potty, getting in a warm bed in warm pjs, putting a few drops of "calm" (lavender oil) on said pjs and getting under the covers.  The covers are somewhat new because until recently she really couldn't stand to be under a blanket.  I have to make sure she always has pj pants on because most nights she will kick the covers off still and curl up in my back for warmth, which is not comfortable to say the least.  Anyhow... back to our bedtime "routine".  After getting comfy in bed she will play a game on the ipad and then we make her change it to a video to watch and we typically roll over and go to sleep.  At some point she falls asleep as well.  It isn't a perfect system and my husband and I miss sitting up together and having quiet time in the evenings before we go to bed but that is just not what our lives look like right now.