Friday, March 8, 2013

The Post in Which I Answer Your Questions and Pour Out My Heart

It has been hard to write an update.

That is honesty at its best.

I want so much to tell you that being at home is better than I have ever dreamed, that my kids are in a great routine, that we are well rested and happy and enjoying every last minute.

And I want to tell you that even on the hard days, I know better than to complain and know that I should wholeheartedly cherish every difficult moment.

That would be honesty at its worst.

What I do want is to remain authentic about where we are, how we are doing, and how the Lord is using all things for our good and His glory.

So how is it being at home? It is hard. Really, really hard.

If you have been reading a while, you know that we have been battling significant sleep issues with Eliana since she was about 15 months old. This past Monday, she turned 3... needless to say that is a long time. We have taken her to two different sleep specialists whose best advice was to: change her nap time, and put her on an adult-level dose of melatonin. Her pediatrician has chalked all of this up to tempermant and typical bumps in the road.

I knew in my core that it was more than that.

As I continued to watch Eliana, look for patterns, and tried to look for some sort of correlation between her behavior, her sleep, and her eating, I began to notice some things I hadn't intended on finding.

During my first two years of teaching, I had the pleasure of having "Bobby" in my class. "Bobby" was smart as a whip... he loved the color blue, knew the name of EVERY President in US history (in order, the dates of their term, their party affiliation, whether or not they were married, and their family members' names), wrote everything in all capital letters even in the 5th grade, and had a sweatshirt that doubled as a security blanket. He had a need for things to be perfectly even, and if they weren't he found some pretty creative ways to make them so.The sound of the fire alarm caused him panic, and any change in routine was enough to rock his world. He couldn't stand buttons or zippers, had to have socks where the seam ran across the top of his foot, and his mother had lovingly cut the tags out of all of his shirts. He had the most creative mind and the most endearing speach. "Bobby" had been diagnosed with high functioning autism.

And so has my daughter.

Little by little, I started noticing little quirks and idiocyncricies with Ellie that caused me pause, and made me internally say, "Hm. That really reminds me of  'Bobby.'" At first, I was able to chuckle and shrug it off and just think about how, like "Bobby", Eliana is so endearing. She has a vocabulary and way of speaking that makes her sound like she is 3 going on 30. :) She is amazing.... she makes us laugh, she remembers the funniest things that you or I in our busy pace would most often forget, and she is so, so sweet.

And she struggles. She struggles when things are too close too loud, too bright or too tight. She can't stand to wear certain articles of clothes because they don't feel "right." She has a certain way of putting on her coat that, if disrupted, will set you back significantly in trying to get out the door. And she doesn't sleep well. Still. After all, it is currently 4:34 am our time, and I am down here writing because after being awakened at 1:00am with a full blown tantrum that not only lasted for 2 hours but also woke up her brother... it's hard to get back to sleep.

So it has been hard... and that is honest. Some days I feel like Moses when God called him to go to Egypt to face Pharaoh. You know the part when he says, "LORD... Please... send someone else to do it?" (paraphrase mine). I feel that way sometimes.

Like Moses, I don't feel prepared or equipped to handle this role. And like Moses, God is with me... fully equipping me for each turn. Most days I have come to the end of myself... and the state of my laundry pile, dishes, and playroom would validate that.

And it is at the end of ourselves where grace is. Where strength is. And where our intimacy with the Lord grows. It is where we see all that we are not and all that He is and how without him... this parenting thing? How would it even be possible? It is at the end of ourselves where His power is made perfect in weakness and we can be patient again... just one more time. The Lord has been really working on my heart and my focus, convicting my heart to trust that he will enable me to be calm in the midst of a tantrum that lasts for hours just one more time. Not all the other times today, or tomorrow, or this week... we'll get to those as well. But this time... just one more time.

Do I love being at home? I do. I love it. I am so grateful that God has provided the means in so many ways for us to do so. I love that I don't have to rush out the door every morning, that on a whim we can change our plans for the day, and that I am the one who is home helping to mold the hearts of my kids. I love seeing the little ways in which they are learning and growing, how their personalities are developing. I love having random dance parties with Eliana, indoor picnics (although I can't wait for spring to get OUTdoors), doing crafts, reading books, and tickling little Jacob until he is laughing so hard little tears creep out of the sides of his eyes.

And I am grateful that I get to be the one to help my daughter through a difficult period as we figure out how to best meet her needs as a little one recently diagnosed with an autism spectrum disorder. It is hard. It is really, really hard. And God is faithful...

His "faithful" is immeasureably bigger than my "hard."

So, Ellie is 3, Jacob is 14 months, and their smiles make my heart swell :)




Sarah said...

Stacy, they are beautiful. Your words alone show just how strong you are. Ellie is so lucky to have you.

Erika said...

Stacy, ((((Hugs))) Maybe I should message you privately about this. I don't know. But I do feel led to let you know you are not alone. Your sweet Eliana sounds SO much like my Paprika. SO MUCH. We have gone through the round of diagnoses with Paprika - and I want to caution you that she might have *different* issues - perhaps she is GIFTED with Sensory Processing Disorder - I really mean no harm bc I went through a long period of time thinking Paprika had Asperger's (she is brilliant but had so many other issues) - but after a long series of testing at Children's Hospital, they said she did not have ASD. At three years old, everyone thought she had Asperger's - and now at 6 years old, she is just an introverted, gifted/brilliant child. Her sensory issues have disappeared (except food) - the tantrums are (mostly) gone, she is doing amazing in is A LOT easier. Even the sleep issues have mostly resolve themselves. Take heart and take the long view. It's going to be okay. (((((hugs))))

Erika said...

I hope that did not sound flip or not taking the diagnosis seriously. I can relate so much to being in that place - with a beautiful three year old firstborn daughter - and wondering why she is *different* - we did not really notice the differences in Paprika until Ginger was born. I thought my grief from vivian and annemarie caused some of her issues even! Ahhh - mommy guilt. But anyway - just know you are not alone. Now at age 6, Paprika is my *easy* child - and things are sooooo much better. We did make a lot of changes to our lives, I read a lot of books, and I did change *everything* for her (in a lot of ways). But now she is in kindergarten, the smartest one in her class (by far) - she is making friends, is a huge help to me, a delight to be around, and all those sensory issues have gotten 1000000% better. That was what was causing us the most problems - her reaction to the sensory world. I don't know your exact situation, but for me - things have gotten better as I've come to accept Paprika's limitations (there are some things we just cannot do) - and to find new, better ways to do things that work with her special needs. As I said, at 3 she was diagnosed ASD and yet when I did the Children's Hospital evaluation at age 5, they did NOT find ASD...and neither did the school district last year. I do know that there are a lot of ASD kids - and it is a very REAL diagnosis. I am just saying that from my experience, many of the issues we had were worked out by time, maturity, changes in diet, environment, and occupational therapy... ((((Hugs))))

Sarah said...

Gosh Stacy! I hate that you are having to deal with such hard stuff (being a mommy is hard enough as it is), but I'm so thankful that our God is big, mighty, and able. I will be praying for you guys as you navigate through this difficult season of parenting. Lots of love!

Sarah said...

BTW, Ellie and Jacob are so precious!

Stacy D said...

Thank you ladies!

Erika... yes... at the risk of being "that mom" I have no doubt in my mind that ELiana is gifted. She just turned 3 and is reading. Not novels or anything :) But when she and I read together, she has a few basic sight words she recognizes, and I work with her on sounding out high frequence words. Watching the say she thinks is incredible...the connections she makes, the questions she asks... and she is such a little social butterfly so much of the time.

It could very well be that you are correct... it is just VERY hard to tease out what the correct diagnosis could be when a child is so young and hasn't started kindergarten.

Sarah... thank you :)

Mary said...

Stacy thank you for sharing with us. My sense, Benjamin, who will turn three later this month, was diagnosed with autism a year ago. If you ever want to talk or vent or brainstorm or whatever please feel free to email me.

Megan Landmeier said...

And God is faithful... His "faithful" is immeasureably bigger than my "hard."

THAT my friend, is what you cling to on days when a diagnosis SUCKS. And there are days it will. And there will be many, many, many more days where life is beautiful.

Kristin said...

Our 9 yr old Gabriel was diagnosed with PDD-NOS (pervasive development disorder - not otherwise specified) when he was 3. Had many "characteristics" of aspergers...but not all. He got involved in a preschool program with amazing teachers that worked with him...and then we used the same "techniques" at home. Today, after a move to MN which required re-testing he doesn't qualify for any assistance. There is hope...and honestly 3-4 were our worst years...but he is such an amazing child, with a heart of gold and a love for God - brilliant...all I could hope for him. I will be praying for you and if you ever need to vent send me a msg!! I have been there!

Erika said...

Stacy, I know it is so hard. ((((hugs)))) I went back and forth - took Paprika to every specialist I could find - and it was just really challenging. I just saw a video about how many gifted kids are diagnosed Asperger's. Also, look into 2e kids (twice exceptional) - that has been really helpful for me. For Paprika, her big problem has always been food (she is a very restrictive eater). Sleep is also an issue for us - but she goes to bed late (1am) and wake up at 9am. My kids all drop their last nap at 18 months - so she (by age 2) was only sleeping 8-9 hours/day...on a good day. But that is part of how she is wired. Setting her bedtime later really helped a lot - if I were putting her to bed at 8, she would wake up at 4am every single day. I thought Ginger would sleep more - haha - but she is the same...asleep at midnight, but at 9. At age 3! Happy Birthday and bigggg hugs to you!!! And congratulations on your new news, too!!!! :-)

Erika said...

***i meant to say: for ginger, asleep at midnight, up at 9. Also- the video i was talking about was how many kids are given the wrong diagnosis for ASD when they are gifted, sensitive kids...of course, there are also kids who are ASD and also gifted. Time will tell. Parenting is not for the weak!!! :-)

Amber said...

I have followed your blog since before Issac was born and very rarely commented. But I wanted to commend you today for being honest about the challenges of staying home, it can be such a difficult walk.

Also, as a mental health professional I want to also recommend info on 2e kids. Twice exceptional kids is literally changing the face of mental health assessments for children. So many kids get ASD diagnoses only to later get something else once they are more verbal, more literate and better at following the many rules society imposes on them.

I wish you strength in whatever paving the road ahead has for you. And I know with your grace you will meet it. Best of luck to you!

Alyssa said...

God's plans never cease to amaze me! It's apparent that He put "Bobby" in your class because it would one day help you to help Ellie.

Ellie reminds me so much of my daughter. She is now 13, but at 3, was very much like yours. Things had to be just so. She obsessed over details. She was talking at a 2 year old level by her first birthday and would amaze anyone when she opened her mouth and would let loose these elaborate conversations. But she would also come unglued if her routine was disrupted in any way, even down to the minute. She hated shoes- any shoes. I often wondered if something was going on, but ASD wasn't as well understood back then as it is now, and was assured that she was just fine.

Today, she's very much like her old self, only older! She's still smart as can be and can debate like no other. I keep telling her she'll make a good lawyer! She still likes her routine. During school breaks, she is eager to get back to a set routine for each day that doesn't change. She only wears her socks inside out, never any other way, and will only wear one pair of shoes. Saves money, but is a fashion bust! She's never had a diagnosis, and she thrives as is, so we don't put much thought into it. Kate is Kate, and that's the only way we can explain some things about her, but she's so special and I wouldn't change anything about her!

I know that Ellie is so fortunate to have you as her mom, advocating for her. I pray that her sleep issues improve! One day, you'll be amazed at how far she's come, and how each of her "quirks" make her special!

Sonya said...

They are truly beautiful! Thank you for sharing your thoughts on staying at home and Ellie's diagnosis. My nephew, who turns 14 this year, also has a high functioning form of Autism. He wasn't diagnosed until after he started kindergarten and AFTER his father passed away. His father who wasn't diagnosed with Autism but had several of the same little quips that my nephew has, and had be been young in this day instead of in the 70s probably would have been classified as such. I am glad you are aware and get do things for her like she needs them. God is amazing. He will not give us more than we can handle and I don't mean to sound insincere in your circumstances. I just know that in some way this is all a blessing.

Mindi Welton-Mitchell said...

Stacy, I am so glad you are still posting, I hadn't come back to your blog for a while. My son is four and was diagnosed with autism when he was 3. He also had sleep issues. I am so glad you trusted your momma-gut and heart.

Autism is a struggle. There are still many, many days when I ask why to God. There are days when I am angry at God for this. But I know that God made my son AJ exactly as he is, and I struggle to trust in God and know that God will see us through. Prayers and blessings to you.

JennyPen said...

Wow. I feel overwhelmed after reading this post. Parenting is so hard, especially without adequate sleep and with added struggles.

I'm also struck by the feeling that a mom who was chosen to parent Isaac and Eliana, two perfect and beautiful children, but often heartbreaking and challenging to carry and parent, must be a pretty remarkable person. What a beautiful family and story you're a part of. Thank you for sharing it. It's left me inspired and encouraged for years now.

Alicia said...

Stacey, I have been reading your blog for such a long time, but I don't comment much. Anyway, a friend of mine has a son only a few months older than Eliana- and her son is in a similar spot. I thought I'd share a link to her blog


The Fabulous Ms. Beth said...

I think a lightbulb just went off in my head... My four year old daughter sounds just like your Ellie.. <3

momflowers said...

Stacy~ Since I am catching up- just felt I needed to post. it is possible as Erila said- that the diagnosis could change. My sister's daughter had sleep issues as well, and her teachers were saying she should be checked for ADHD. I know Autism spectrum is a whole different diagnosis...but just wanted to share that my sister took her daughter to a wholistic Dr. who also uses meds for ADD, etc...but they found her body could not make/ process amino acids, and that is linked to melatonin, and she could not process sugars, etc. I am sure I am not getting this all correct- but they have modified her diet, and by adding in melatonin- since her body could not produce enough-and supplementing amino acids- she has been doing much better. Just never hurts to check dietary options as well. There is so much linked to artificial colors, and high fructose corn syrup & preservatives, etc. I of course do not know what types of food you feed your family- nor is it my business- just saying that there are hidden ingredients in many common foods & drinks & it could be possible to check it out. Your children are beautiful & I can tell you are a great Mom- hang in there! Lack of sleep is so trying!

momflowers said...

I as well am not trying to trivialize or not take Eli's diagnosis seriously. Sorry for the typo on Erika's name too. :)Just like to share if anything could possibly help someone.