Wednesday, September 3, 2014

The Game Changer

I have been pondering a long time if I should write about the biggest game changer in my life, probably the biggest one there will ever be in my life. 

I am finally deciding it is time to tell you about this big change, because I have known many of you throughout my life. I am so happy to have ways to stay connected to you and I am grateful that we have shared memories of times in our lives--from my dear, tender friends of elementary and middle school days to those adult friends I've met more recently. 

See, those of my past aren't seeing my present--just what I write in emails, blogs, or on facebook.  I want you to know what I am going through now: not for your pity, nor for your opinions, but for you to just know.

These past 20 months have had some of the most exhausting and heartbreaking days of my life.  And one of the hardest things is knowing that I will still have more exhausting and heartbreaking days ahead, but at least I know they are coming.

Now, I can see some of you spinning your mind wheels and counting back to 20 months ago....

Yup, I was pregnant.  We had just moved to the bay area, lived there for about 2 months, were expecting our 6th child in a few weeks, and getting a little bit frantic about our toddler's lack of speech.

We had stayed at our in-law's house for a month while we were house-hunting.  My sister-in-law had a journal in the bathroom that seemed like a "everyone write your thoughts down, if you want" kind of thing.  Of course, she wrote in it most.  No one said it was off-limits so I read it from time to time.  One entry was a bit strange to me.  She'd written something like, "how do you tell someone that you think their child has autism?"

Of course, I remembered this note retrospectively.  My husband and I were secretly worrying more and more about why our little son wasn't saying more than a handful of words a week (the same "ma," "da," "nigh," "no," "all-done" that he'd been able to say since 15 months of age).  He liked to jump, but hey--what toddler doesn't like to jump?!  But then he started to spin himself and little objects, like toy bowls and lids.  Even I knew that this was a red flag for child-development.  As we read more, both together, and separately, and answered online questionnaires we realized that our sweet 21-month-old was meeting about half the criteria for autism spectrum disorder. 

Autism?!  How could it be, I thought.  My son makes eye contact pretty often.  He doesn't get mad in a new environment or with new people.  He doesn't get upset if his toys are not where he left them or someone touches them.  He likes to be touched and hugged and kissed.  I thought people with autism got very upset with touch, change, and newness!

No, it's more of a social thing, a being aware of the world around them, not just parts of it.  The whole forest through the trees thing.

This explained why he would never ever point to the ball (or any pictures) in the same, simple children's book that I'd read to all of his older siblings.  This explained why he took out all the empty water bottles in a drawer and rolled them all over the floor, yet never put one to his mouth to drink.  This explained why he would open and shut the shoe cabinet doors over and over again, but never take out a shoe and try to put it on.  This explained why he didn't follow easy commands like, "Come here" or "Wave bye-bye."  This explained why he took a long time to settle down and go to sleep, and sometimes woke up in the middle of the night for no apparent reason, again taking a long time to fall back asleep. This explained why he began to become very picky about what he would eat. This explained why he seemed to have no clue that my belly was getting round and hard and was thumping him in the back when he sat on my lap.  This explained a lot.

Everything was weighing heavy on us and worse, for me, was realizing I was having another baby.  What if she started exhibiting signs of autism?!  My heart was breaking as I was becoming more aware of how much my life was changing.

My husband was on a business trip and we were talking and crying, every night, on the phone.  He finally just cut his trip short and came home.  We cried in each other's arms all night and then called my son's pediatrician the next morning. 

Everything has a waiting list, so by the time he was able to be assessed, by the child psychiatrist and developmental pediatrician, our baby girl had been born and he was near approaching his second birthday.

Being in their office was one of the most awful days of my life.  Hearing the results, where my son's development was on the social, cognitive, and physical levels was like drifting helplessly in the sea and having unseen waves push and pull me around.  There were other days and nights like this to come, when I was just barely able to lift my head for a breath.  The only "good" news of the day was that his gross and fine motor skills were pretty close to where they should be.  (And looking back, I know we are fortunate that he can move around and do things without hindrance).

My saving grace was probably that I had just had a baby and was enjoying her newborn-ness.  Being sleep-deprived because of caring for a sweet new baby is okay with me.  Being sleep-deprived because a toddler is singing his head off (using sounds, not words) or because he is screaming and crying for reasons he can't tell me is NOT okay with me. 

Some nights I had just gotten the baby fed, changed, and rocked back to sleep, only to have my head hit the pillow and 30 minutes later have the screams of a toddler jerk me out of my meager slumber.  Another saving grace was that my husband was on board.  He had never really woken up with any of our other kids; I'd always nursed our babies and later I got up when they were older and feeling sick.  Since he worked outside the home, we thought it best that he get the rest, I could often get a nap in the following day, if I forced myself to stop doing things and take one when the kids at home did.  But this time, he was almost always the one that got up and held and rocked and sang to our little toddler.

I had a crash course on all things Autism Spectrum Disorder related, over the course of just a few months.  Having graduated from college with a degree in psychology, terms and definitions that I studied to pass tests, were suddenly taking on real and unwanted meaning in my life.  I read as much as I could, in between caring for 5 other children and having to drive them to and from school and activities) as there was no transportation department at our new school district.  (My youngest child spent more time in her car seat in the first year of her life than all her older siblings time in car seats combined!)  I had to meet with doctors and specialists whom I really didn't want to meet with--not because they weren't nice, but because I didn't want to have to deal with this worrying and planning and preparing for my son's uncertain future.  I had to painfully tell my family and people at my church what was up with our son, so that they might understand why my son might giggle at nothing or grunt in the middle of our conversation or spin their flower pots.

I reentered the cell-phone world at just the right time.  Having gone for about six years without one, I got an iPhone 5.  This was just the right time because it meant I could text fast without having to use abbreviations: after learning about my son's disorder I have come to have a strong disdain for three letter acronyms: ASD, ABA, PRT, IPP, IEP, ABR, PECs, PDD-NOS, etc...  As well as puzzle pieces.  (I think autism should be represented by this symbol-"?!?!?").

Baby step, by emotionally gut-wrenching baby step, we got behavioral and speech therapies set up for him at home.  At the original assessment I do remember the doctors saying that how well he responds to therapy, over the next few years, would be a good indicator of the quality of life he might have.  After weeks of therapy we began to see millimeters of improvement.  I have learned to rejoice in these millimeters, even though they are microscopic compared to his peers who are kilometers ahead.

For my other children, I did my best to document and celebrate my last baby's first year of life.  And, try and bring normalcy to my oldest four children's lives.  I know we have a loving Father in Heaven.  Being so tired and stressed--I should have developed mastitis a million times.  But, I never did.  Someone was lifting me up to keep my head above the waves. 

Everything has a waiting list, so by the time we were at Stanford, and he was actually being assessed specifically for autism and being given the "official medical diagnosis," it had been 10 months of getting used to our new, not wished for, life. 

Everything they said to us was no shocker; we'd had 10 months of getting ready to hear what we already knew.  We handled the news rather well, they said.  The head child psychiatrist was distracted while she explained everything, distracted by our extremely adorable, yet autistic, little boy.  Remember how I said he makes eye contact pretty often?  Well, if you are one of those fortunate souls, you not only get to be mesmerized by his dark brown peepers, but you will most likely be given one of the most genuinely happiest of smiles: a beautiful little smile that speaks from his little soul--telling you that he is extremely pleased to meet you.

It had been an exhausting 10 months.  Though I would have liked to have nursed my last baby for longer, since she was our last--she was weaned at age 12 months on the dot, we had our son's "official diagnosis," and my husband and I left for a much-needed 10-day trip to Hawaii--all in the same week.

Now, we've moved again.  I have a 4" three-ring binder full of all my son's "stuff" we've accumulated in his short life.  He has started at his second special day class for children with autism (first one was in our last area).  People first learning about him always ask, "Where is he on the spectrum?"  Moderate, if you must know.  Yes, it could be worse.  Some days it is worse and he screams.  But, most days, it is okay.  He is still making his millimeters of progress.  His baby sister has now surpassed him in almost everything developmental (except for running and jumping!) 

My family has all grown so much.  My four older children are like mini-therapists; they are all getting quite good at engaging and teaching and directing their youngest brother.  My baby is teaching him to stick up for himself and that it is okay to get upset when she takes his toy, instead of just walking away.  He is learning to associate where things are better.  He started singing familiar songs, with sounds, not the actual words, right around the time he turned two.  My husband and I do not find it coincidental that the first song we recognized him singing was, "I Am a Child of God."  He loves to play with toys that make sound.  He loves to bang and spin and swing different objects to hear their sound.  He loves to play our piano.  Guess who played most of "Chopsticks" by himself the other day?  (We have sat and done it with him--but this time no one was around and he went in and figured out the notes himself!)

People say, "Oh well--autistic people are geniuses in specific areas."  That is totally not true as most individuals with autism are at normal or below normal IQ.  So, do I expect he will a savant like Mozart?  No, but it would be cool. Do I believe he'll have a lifelong appreciation for music and sounds?  Absolutely!

I have learned that 55% of communication involves no spoken words.  I am getting better at reading that 55% in my son and others.  My husband and I are picking up the pieces of our shattered future and putting them together in a different, flexible way.  We may not be able to travel the world and serve all those church missions we always hoped we would when we retire, but it doesn't mean we can't serve.  The atonement of Jesus Christ--that I always believed in and understood to mean we would all one day be perfect--used to mean to me, that I would have no more scars or crooked teeth and finally be able to recollect all my forgotten memories, now has a much deeper meaning for me; it means that my beautiful son will one day tell me all his glorious thoughts and hopes and dreams because whatever is not whole in him (autism is such a mystery) will be made whole!

We believe he will speak to us, eventually.  Right now he is learning the basis of communication--the exchange of something for something.  He has always made lots of little sounds so we know he is capable of speech.  I'm not holding my breath for it, but I sure am persistent about getting him to emit sounds for favorite objects--crackers, blankets, going outside.  He will speak, eventually.  He will show an interest in potty-training, one day.  He will improve because he is already improving.  It is millimeters.

So, my dear past and present friends--I hope when we meet again, and it's a small world so we may eventually run into each other--you will do one (hopefully both) of two things: 1) Find the balance in showing me you support me in my newfound, lifelong, trial without sounding fake or condoning and 2) Come up to my son, get close to his face, talk to him and see if you can get one of those heart-melting smiles. 


Eva said...

I had no idea that you all were going through this I cannot fathom the fear, heartache and pain you have endured on this journey. At work, I managed a relationship with the Autism Speaks organization. They are good folks and care a lot about the autistic community. Let me know if I can help you get in touch with them. I will help support you in whatever way I can, even if it is a shoulder to cry on. Sending you hugs and strength.

Unknown said...

This is beautiful. It brings a tear to my eye and a smile to my heart. You have a beautiful son.

Helen Monson said...

I understand everything you wrote. I am sorry for what you are going through. It is a roller coaster ride for sure and will continue with its ups and downs over the years. Our autistic son is now 11 and just received 4 new diagnoses in July. Life can be extremely hard sometimes. I have found that talking to people who have actually experienced the same thing REALLY helps, so please call or email any time.
Loads of love

Tara said...

Beautifully written, Kiersten! Thanks for the update. Your sentiments ring close to home. There are so many beautiful things about raising a child that has special needs, but it is also a continual mourning. Keep celebrating those millimeters and know that when you mourn the fact that your millimeters are not kilometers, you've got others who understand. He is blessed to be a part of such a loving family with such dedicated parents.

I gave you the "Welcome To Holland" poem, didn't I? I just had to read it again just the other day. Sometimes I'm just so darn mad that I'm in Holland, but thankfully those days usually pass and I can see its beauty again.

Stwiddy said...

I understand what you are going through. My oldest and youngest have been diagnosed with Autism. We have had similar struggles and so many small victories. Focusing on what they can do instead of what they can't has changed my perspective and helped me get through the meltdowns and language barriers. Know that you are not alone and those of us with similar issues are ready to be of help or just a listening ear.

Our family said...

This is beautifully written Kiersten! I'm sorry you have this trial, but I am so glad fir him to have such awesome parents in your and Jon!

ldsjaneite said...

Well, you know I love you (and your family!) more than my life. You've always got a listening ear or a short shoulder or a silly sense of humor should you need any more of that. They're yours at all times.

Anonymous said...

Hi Kiersten, My son was diagnosed with autism in April this year. He is currently spending 20 hours per week in ABA therapy and I spend most of my time driving him there as well as trying to balance caring for my other children. He just turned 4 and I can't wait to hear him talk. It is life changing to have an autistic child but all the work it takes to get him help is worth it. He has already come a long way in just a few months of therapy, they helped him potty train and his behavior has improved so much. He is also starting to say a few words. Good luck with everything! From experience I know how hard it is but I know we can both make it and help our little guys get what they need.
Janelle, a former roommate from Regency 15

Lisa said...

Kiersten, this is beautifully written. I'm so glad one of your friends already gave you "Welcome To Holland". I love it! Our youngest has a learning disability and we have two grandsons with disabilities - one with SMA and one with Down Syndrome (as well as a few health issues). You're a wonderful Mom and Heavenly Father is aware of you and your family. My daughter's motto is "I can do hard things with the help of the Lord" A big hug from me to you xxoo

Julie said...

Keirsten, I don't personally know how hard this is for you, but I did work in a group home for Autistic children. It is amazing to watch them grow and make those baby steps. We had a couple children who learned to communicate through sign language. Your son sounds very sweet and you have a beautiful family. The Lord is good and is looking out for you and your family. You were, and I'm sure still are, an amazing lady. He couldn't have blessed your son with a better mom. Good luck with everything! And I do hope to see you again someday.

jonna said...
This comment has been removed by the author.
jonna said...

I left this on FB, but also wanted to post it here. can't even imagine how life-changing your new path is. You expressed it so beautifully in this post. Any yet, this story is beautiful, because I believe it will also be your story! Love you!

Alanna said...

Kiersten, my heart goes out to you. I cannot imagine what you are going through, but I'm sure that if anyone can do this, it's you! Your little boy is so lucky to have you.
I love how you recognize your tender no mastitis in your stress. It's a good reminder to me, how Heavenly Father blesses us in our trials. I know He does. Thanks for reminding me again.
Take care.

Melissa said...

Kiersten, thank you sharing this. I think of you often and how your sweet family is doing. All six of your children are so blessed to have you and Jon as their parents. Continue to celebrate and find joy in the millimeters of success and remember that sometimes it is okay to cry also.
Although I have not experienced this challenge, I have learned personally that the Savior is always, always there for us and can carry us on days that it just feels to much.
I wish we could still do our Saturday runs and I hope I do get the chance to look into Rykart's big brown eyes sometime soon (and have a chance to see how big your other kiddos have gotten!)