Saturday, May 23, 2015

To the Caring Teachers of the Little Ones with Special Needs

I don't know your background.  I don't know why you chose this profession.  I don't know where your inner strength comes from or what keeps you going.  I don't know if you will keep doing this or if you will move on to other jobs.  I don't know how much of your day you take home with you at night.

But this is what I do know:

I know you care for our children as if they were your own.  I know you celebrate every single little success they have, because you know just how hard and long they had to work to achieve it.  I know you watch them develop and your hopes for them go far beyond your classroom.

I know you hear the same news stories I do.  I know you cringe when you hear of a teacher who hurt a nonverbal child.  I know your heart aches that you have to work so hard to earn parents' trust and you wish they knew that for every one abusive teacher of special needs children there are a hundred more that would do anything and everything to protect our children.  And because you are that teacher who would do anything to protect these kids, you have no problem earning our children's trust and earning our trust.

I know you have hard days.  I know you juggle the needs of many children at once and have to work constantly to maintain the peace in the classroom.  I know you stay up late working on things for the next day and stay at work late to make sure your classroom is "just so" for tomorrow.  I know you have to work harder than your fellow teachers who teach typical children to think ahead for the day and to try to see and prevent potential triggers and obstacles that might make our children's days that much harder.  I know the hard days have been physical, but you press on, you don't lose your cool and you hope tomorrow will be better.

I know you probably have days when you wonder if all of your patience and heart and perseverance are noticed.  I know you might have days when you want to throw in the towel and move on to something easier.

I hope you know that I see your passion for these children.  I see the excitement in your eyes when mine does something new or overcomes something that once would have set him back.  I see how hard you work to ensure he has successful days.  I see you on the hard days and I know when he comes home upset, you may have endured a day of screaming and crying.  And I know you did everything in your power to calm him.

Know that you have given me a break when I needed it the most.  Know that you have given peace of mind about one aspect of our day to a parent who has to worry about so many other things.  Know that your love and acceptance of my child is a welcome change from the rejection and isolation we so often face.  Know that every success our children will go on to have is the result of a foundation you helped lay.  Know that every struggle and every accomplishment in your classroom are stepping stones to a future they couldn't have had without you.

I know you wonder if you make a difference.  Know that you do.

A Special Needs Mom

Saturday, May 9, 2015

Baring all: A Mother's Truth

The baby years with each of our children have all been so different.  On the surface one would think that experience is completely shaped by the baby's temperament and the family dynamic at the time the baby is born.  While those definitely factor into the experience, looking back and examining myself as a mother, I see my outlook at the time, my own mental health and my support systems molded each babyhood and how I remember the early days in each case.  That being said and this being a piece about me as a mother and not my children themselves, I can say without guilt that I am finally enjoying motherhood and the baby years the third time around.  There, of course, were many happy moments with each child as a baby, but this time I'm in a better place and it's made a world of difference.  We still have rough days that gnaw away at my sanity, but, for the most part, we push through the bad ones and hope tomorrow is better.  That was not always my mindset and I know there are a lot of new moms and special needs moms that are still in that dark place feeling isolated, but you are not alone.

When I was pregnant with our first, I had everything planned out perfectly for how I would raise all of our children.  I didn't have a lot of hands on experience with newborns or young babies, but I had read everything under the sun about the best parenting methods and all of the latest studies for what to do with babies and what not to do with babies.  I knew that I would nurse until the baby was at least nine months old and I knew that I would try to get him on a schedule as early as I could.  I was nervous, sure, but I planned my way around the nervousness.  I had gotten my BA and graduated near the top of my class.  I had managed a law firm for a couple years after that.  So I was quite confident that I could handle anything this parenting gig had to throw at me.

We had our perfect baby boy at a perfectly scheduled induction with a delivery and post delivery that went perfectly.  Everything was right on schedule as we left the hospital to go home to our perfectly organized nursery.  I wanted to do everything right.  This was a human life so there was no room for error.

Nursing was going okay in the hospital, but once the soreness and the cracking started, things went south quickly.  I would power through it.  After all, all good moms HAD to nurse if they were physically capable.  Everyone talks about it not being easy at first, so I just assumed the pain I was experiencing was normal and that dreading the next nursing session to the point of tears would alleviate once we got into a rhythm.  It didn't.  The pain got worse, my production dropped off, infection occurred and because he was getting barely anything in his stomach he had to nurse constantly.  I sobbed with worry in the nights as I could tell I was not doing it right or something was not working.  My husband begged me to try formula for my own sanity, but my pride and knowledge of the "right way" to do things wouldn't let me hear him.

Much worse than the nursing troubles was the anxiety.  The anxiety about every little thing.  Was he too hot, was he too cold?  Was I putting too much water on his hair?  I completely stopped sleeping, even when he would sleep I was wide awake with worry, trying to hear him breathe.  After the third day without any sleep, I started hallucinating.  Even though he was safe in his pack and play I was completely convinced that shirt wadded up on the floor was his little body, that had somehow fallen out of the pack and play and my heart jumped into my throat.  At one point my husband found me with the baby crying in just his diaper and me with all of his clothes laid out on the floor trying to find something that was appropriate for sleep.  My brain was too bogged down with worry to even make simple decisions.

I had heard of Postpartum Depression, but I assumed if I was having PPD I would be weeping constantly, which I wasn't.  I didn't realize that extreme anxiety and sleeplessness were also symptoms.  I called to talk to my nurse about the sleeplessness and finally broke down into tears; they had me come in right away.  After talking to my doctor and realizing what I was experiencing went far beyond the baby blues, we decided on a course of action to get me functioning and feeling well enough to take care of myself and our baby.  One aspect of that course of action was to stop trying to nurse and although I was heartbroken, I knew it was the right decision.

The anxiety did not go away completely.  I was still a first time mom, after all, but with the proper medical treatment our schedule and routines started to fall in to place and my confidence started building in my abilities as a mother.  So much so that we decided to have another child close in age so that we could wrap up the baby years close together, the kids could go to school and I could go back to work.

Twelve months and ten days after the first we had another beautiful baby boy.  After everything I went through the first time, I knew this time would be better.  I knew how to do the baby thing this time around.  I wasn't worried about nursing.  If it worked, great.  If I started having medical issues again, I would not hesitate to switch to formula.  I had a plan, I knew how to get a baby on a routine and the order to introduce solids and how to time naps.

Aside from the very different dynamic of having a one year old and a newborn, there was something else that made this time so much harder.  I couldn't put my finger on it, but nothing was working.  All of the things that had worked with our oldest did not work with our youngest.  Nothing that I did seemed to comfort him.  We thought he must have allergies to what he was eating, as he seemed miserable all of the time.  I was elated when his first teeth broke through at four months old.  I thought the constant crying would stop and that must have been the issue the whole time.  It wasn't.

When the boys were six months old and 18 months old we moved across the country again to a new home.  I knew no one and my husband deployed three weeks after the move.  I made friends and we all got together frequently, but I couldn't help but feel like I was doing something wrong as I watched their babies develop, get on a schedule, and hit their milestones.  My oldest had hit all of his milestones early, but our youngest was not crawling, was not sitting up on his own and was not babbling.  Worst than all of that at the time was that he never ever slept.  With my husband overseas, I was essentially single parenting a young toddler and an infant on next to no sleep.  I would try to relay my concerns to my husband during our phone conversations, but with the kids always needing something it was hard to have an in depth conversation about my state of mind or my worries about development.

Our pediatrician continually chalked up our youngest's difficulties to just being a harder baby and being too stubborn to hit his milestones.  He insisted that I let him 'cry it out' to finally get him to sleep, which I tried to no avail.  He would hurt himself and cry so hard he would vomit.  Upon consulting the pediatrician again, I was told if I just let him go he would learn not to hurt himself or vomit because he would have to sleep in it.  I had never disagreed with a physician before and ended up letting him sleep with me instead, which I hated and swore I would never do.  Even with him lying right next to me, he still wouldn't sleep.  Every food, every transition, every everything was a battle.  A battle I was losing.  I can't help but think if I had had a pediatrician that would listen, or a husband home that was seeing the same things I was, or a friend who had been through it all and may have known what to look for, the mommy guilt may have not come on so strong.  I even took videos into our doctor to try to make them understand the extent of how upset he always seemed to be.  I don't think young parents would ever believe how naive many pediatricians are when it comes to autism and other neurodevelopment issues.  I took ours at his word and thought I was losing my mind or just a really terrible mom.  Or maybe it was all my fault because we had the kids too close together and all of our youngest's issues stemmed from me not have enough time or energy to tend to him properly.

It's amazing how as mothers we always turn inward and every problem with our children or our marriage we make our own responsibility.  And instead of lifting each other up and encouraging each other during our most isolated moments, we judge each other as mothers or feign understanding and compassion and then talk about another's decisions, methods, and struggles behind her back.  It's no wonder new moms feels so alone.  God forbid they voice their feelings or their shortcomings and be met by an army of judgmental women who are sure they have made better choices.

I am sad to say it's even worse in the autism community.  We judge each other's every move from treatments to labels to parenting methods.  So much so that the simplest things have become controversial.  And outsiders judge us too.  It doesn't help that we live in a society that always wants to place the blame on someone when we are dealing with something like autism, that we still know so little about.  And sometimes the people closest to us that should be our greatest support hurt us the most with their ignorant comments and their own need to place blame.  Parenting is hard, but made so much harder with the mom shaming and negativity that comes with it.  

But the third time around, I let all of that go.  Our third is a beautiful baby girl, who by all accounts is not nearly as easy as our first.  It's not easier having two other children, one of whom was a toddler with autism going through some of his most challenging moments when she was first born.  But this time, I made sure I was okay.  If I need help with the kids when my husband is away, I budget for another set of hands to help out every once in awhile.  When I feel like I'm about to lose it, I try to be better about communicating that to my husband so we can make a plan to alleviate some of the stress of being a full time special needs mom.

I don't play the mom judging game and I surround myself with others who feel the same way (most are in my computer, but I'm okay with that).  As far as the judgmental voices or chatter that comes my way, I have discovered life is so much better once you stop giving a damn.  But to enjoy the baby years this time around, the harshest critic I had to silence was myself.  Our lives cannot be completely scheduled or predictable, and that has to be okay.  Our house cannot be perfect, or even close to it, and if that means I get more time to play with my kids, I think that's a better deal.  The kids are going to watch tv so I can have my coffee, or do some dishes, or write and they are not going to be damaged if they watch one too many shows a day.  I won't send award winning cupcakes to school on party day; in fact, I might forget to send anything at all, but I will be enjoying outside time with the kids the night before and not cooped up in the kitchen.  The years they are little go by far too quickly and over-planning and worrying will not slow it down.  Quite simply, this time around the first steps, the first words, the first party, the day to day joys of having a toddler I have finally fully grasped because I've learned to let go.

I want to tell you a story...

I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad...