Tuesday, April 14, 2015

this week in (smartphone) pictures - weeks 18, 19, 20, 21, 22 - (or something like that!)

Many things to write about, but sickness has invaded our house for almost a week and a half now, I think. I've lost track. The boys are better (aside from the lingering snotty nose and cough), but I think I may have caught what they have. We shall see what I feel like when I wake up.
However, as usual, I am behind on my week in pictures so that it is more like month in pictures. Again, these are just from my phone - not high quality but happy memories.  I will try to post Easter pictures soon.
Even on tough days (or weeks), it is a joy to get to be these boys' mama. They are fun, they crack me up, and they are learning and doing new things all the time. Bubby is six next month. It means 1/3 of his time with me will be over! But I won't think about that right now. I'm sleep deprived and coughing and emotional. Here are the pictures:

In recent weeks, Bug has enjoyed learning to wrestle his big brother.  It's a rite of passage, I believe, for all brothers.

 A somewhat blustery day at the park. Gotta love matching hoodies.

Ninja Turtle jammies + sunglasses + maraca as a microphone + plastic guitar for a video game system we do not have = a five year old rock star

The Hubs bought the boys some M&M's. A picture is worth a thousand words.

Spring Break from Babushka.

And Spring Break visit from G-ma Deb aka the Bugaboo Whisperer. Seriously.

Bubby watching Wizard of Oz for the first time. He told me the witch was not scary! Who is this kid?! She terrified me as a child. I STILL am afraid of the Wicked Witch from the West.

Zoo day with friends. (pictures with friends not included on this blog) It was a perfect morning and we got through our picnic just as it started to rain.

Bubby went to Chuck E. Cheese for a friend's birthday party.  He likes the driving games.

Lunch date attempt with my youngest. First half went great, then we had to leave to prevent a meltdown over a tablecloth. As I was taking him to the car to finish my food and for him to calm down, he yells out, "I had fun! I had a good time!"

I went to check on the boys before I went to bed, and I found Bug holding onto Scout's ear. Such a good doggie.

Bug couldn't decide between Elmo pajamas and Cookie Monster pajamas, so we went with both.

Sunday, April 5, 2015

What I Read in March

March ended up being a good month for books for me - I found pockets of time once the boys were in bed and tried to make myself read more than get online (hence the lack of posts including picture posts). Most of the books I read I enjoyed, although there were a couple I didn't finish and one I technically finished in April.  Here's what I read:

  • Unbroken by Laura Hillenbrand - I have not seen the movie, and I read most of this book in February but didn't finish it until March.  Amazing true story of survival and redemption and so much more.  It makes me even more thankful for our military. I had to take breaks from this book because some of it was so intense - and that was just me reading it. The fact that men lived through these events ... there just aren't words to describe it.
  • The Spark: A Mother’s Story of Nurturing Genius by Kristine Barnett - Her child has autism, but she also ends up discovering he is a genius. She pulled him out of public preschool and her methods were interesting and inspiring. The way she also gave to her community and other families with children with autism was encouraging. The writing on this book was just average in my opinion, but the story was very interesting to me.
  • Big Love: The Practice of Loving Beyond Your Limits by Kara Tippetts - A short ebook on being kind in parenting (and in marriage and in other relationships). The formatting of this book was a bit funky, but her insight and the discussion that came from this book was worth getting over the formatting issue. Because of this book, I am trying to keep in mind that love is kind and kindness matters. I wrote a bit about this book here.
  • The Boston Girl by Anita Diamant - I loved the main character of this book. It follows mostly the teenage and young adult years of a Jewish girl/woman in Boston in the 1910s/20s. I was sad when the book ended. It was a quick read, but one I have already recommended to a friend who likes books featuring strong women.
  • The Last Time We Say Goodbye by Cynthia Hand - This is a young adult novel and so it's another quick read, but read with a box of tissues. I related very much to the main character in many ways - a girl whose father left their family for another woman and the issues that can present to a family. Another novel where the characters stay with you for awhile after reading it.
  • Prayer by Timothy Keller - The first half was good, but felt a little repetitive or something. It was hard for me to keep going. I'm glad I did. The second half was wonderful and helpful and I wrote a lot of quotes down. This is a book I'd like to eventually purchase to highlight and use as a reference.
Two books I started but didn't finish: 
Heaven by Randy Alcorn - This book felt very repetitive to me and I didn't get as far as I wanted before having to return it to the library. That being said it had a lot of information about heaven I had never really thought of before and some things I didn't even know. I will probably check it out again.
Why I am An Atheist Who Believes in God - by Frank Schaeffer - I like to read books by people who have different beliefs than I do. Some of this book spoke to me (even with our huge differences) and some of it frustrated me. Sometimes the author seemed arrogant to me; other times he was very likable. There were more compelling books in my pile this month, so I didn't finish this before it was due back to the library. I may or may not check it out again.

Thursday, April 2, 2015

what I want you to know (as we're one month in with the autism diagnosis)

Today was World Autism Day or Autism Awareness Day or some label like that. We're new at this, so maybe by next year I will know the actual name of today instead of having to Google it.  We wore blue and took a picture with Bugaboo, who actually SMILED for the picture.  (We took it with the iPad, and he LOVES the iPad, so he was smiling for it more than for us.) And after the picture, the day continued as it usually does.  Laundry, teaching Cole, therapy appointments, meals to cook, The Hubs going to work,errands to run etc. Autism Day was just like every other day - a mixture of highs and lows, meltdowns and victories. And near the end of the day, I spent a good thirty minutes crying.

I wasn't planning on crying. I wasn't thinking of anything that should have made me cry. But a simple thing like getting Easter outfits for the boys ended up being rushed, I ended up with clothes that won't work, and the thought of taking both boys back across town tomorrow to return the items was overwhelming to me. So the tears started flowing because of the clothes, but they kept flowing for other reasons.

I sat at my kitchen table, overwhelmed and exhausted from taking care of a child with a dual diagnosis. Autism affects Bug's social and behavioral side of things, cerebral palsy affects his motor skills, and they both affect his cognition, speech and language. Today was the first day I think I really had a big cry about the vastness of my son's disabilities.

Today is Autism Day, and while we are new to this label, we are not new this life.

Across social media today people are posting stats and information about autism, and for that I am thankful. I don't have stats to write about here tonight. I just have our lives. So on World Autism Day, and us being just one month in to this official diagnosis, here is what I want you to know about my world:

(one of many selfie attempts of us wearing blue for World Autism Day)

  • It is exhausting.  I'm done pretending it's not exhausting. Think of how exhausted you were when you had a toddler - especially when the child is on the early side of two years old. I live that every day. Only my son is four.*  So even on the wonderful, great, "easy" days, I am often exhausted.
  • Bug is just like other kids in a lot of ways. He likes books and music and  his dog and his favorite DVDs and going to the park.
  • Bug is not like other kids.  He doesn't really play with other kids. His physical limitations mean he doesn't get to do a lot of things other kids do. He is fixated on VeggieTales and a few beloved PBSKids shows. He has echolalia, so he will say the same things over and over again, and if he doesn't know what to say (which is often) he will fill the silence in with a familiar phrase (his typical one is "Watch a movie.")
  • I celebrate pretty much every mini-milestone. Not because I think the world revolves around our kid but because he (and we) have worked pretty stinkin' hard to achieve the milestones.
  • My faith is what sees me through this, but it also is one of the things I wrestle with the most.  I don't understand why Bug has autism AND cerebral palsy. I could insert a lot of cookie-cutter phrases here, but I won't. I know God can handle all the questions (and frustrations) I have, and so He hears from me a lot. I have peace knowing that He sees and hears and knows even if I don't have peace about every other little thing.
  • Bug likes people. He doesn't interact with his peers, he can't engage in a regular conversation (we are working on that!), but he likes going to his Wednesday and Sunday activities where his friends are. He knows all of their names, even who is absent each week. He will probably remember you and your name after only meeting you once or twice. He loves the teachers/helpers he has had at church - LOVES them. He loves babies and is fascinated with them from a distance. He is a big fan of his Uncle Chow. 
  • He likes to be alone. If we would let him. Bug would spend almost all day looking through books (and watching VeggieTales movies). Much of the time I have to intentionally engage him/intentionally find ways to get him to engage with us or with an activity. He will not seek me out to show me something, do something with me, etc. - except sometimes he will seek me out to read a book.
  • We go to a lot of therapy. He has eight therapy appointments each week. Sometimes I am overwhelmed by all of the therapy. I would get rid of the school therapies if I knew for sure it wouldn't come back to bite us. All of the non-school therapists (there are three of them) give him (me!) homework each week- list of activities, exercises and things to practice. Sometimes I feel like I can't keep up or do what they all want me to do with the time I have. I feel guilty that I can't give Bug a bigger chunk of time. I feel guilty that I can't give Bubby a bigger chunk of time. I feel guilty that I can't give The Hubs a bigger chunk of time. I feel guily that I can't give family, friends, our house, volunteering, etc. a bigger chunk of time.
  • Sometimes it is hard for me to see kids Bug's age. It is kind of like when I miscarried, seeing pregnant women was hard. I cried after a baby shower I attended. I cried after almost every baby announcement was made. That's the only way I can relate this aspect of our life. Sometimes after church or a playdate I cry because I see glimpes of what I am missing out on in light of Bug's disablities.**
  • Routines are a blessing and a curse.  They give Bug a sense of peace, order, control and calmness. He knows our daily rhythms, our weekly appointments, even the order of service at church, If we got a cookie one time after speech therapy, then the next week (and several weeks after) he will want a cookie. When the coloring came before the story on a Wednesday night at church, there was a meltdown.
  • Bug is still a snuggle bug at an age where most kids stop wanting to be rocked by their mamas. I know a large part of the snuggles are for sensory input, but it's still time holding my child. 
  • If give Bug part of the grocery list (aloud), he will remember it and therefore help me remember what I was supposed to be getting at the store. One of the perks of echolalia! 
  • It can be lonely having a child with autism. I don't know how to explain this right now in more words.
  • It can be encouraging because I have met and become friends with so many people I would not have otherwise known if Bug was a typical preschooler.
  • Bug having autism (and cerebral palsy) hasn't changed the fact that I think I am mom to the two best boys on the planet. (Biased, I know.) Watching them be brothers, in their own unique way, is a beautiful thing. I love that I can celebrate every new thing that Bug does - so many of them are things that get overlooked for many other families - and people celebrate with us. I am learning to not worry about what other people think. I am learning to be thankful for the small things. 

*I am not meaning to say that Bug is a two year old - just that I have to help him with getting dressed, eating, potty training, even play is not what a neurotypical four year old would do. 

**I do not cry after every play date, church service, or gathering where Bug is among his peers. Sometimes it just hits me when I see him next to a peer or when I see Bubby playing with a child who is Bug's age. Those things are hard for me once in awhile. Please don't stop inviting Bugaboo and Bubby to hang out with your children.

Monday, March 30, 2015

Make sure to check your oil

The other day while cleaning I found my handwritten notes from an interview I did with Mimi and Papa about their lives. I'm not exactly sure what year I did this, but I remember sitting at their kitchen table with questions, but mostly just listening to their stories of their growing up years. The tape recorder didn't work that day, so I have two pages of notebook paper with my chicken scratch on it to remind me of their stories of my grandma's years in California, both of their years in a little town in southern Illinois where they would walk the square for something fun to do, and of the days when my grandpa would hitchhike up north several hours to where my grandma lived. What a joy to read through my notes tonight. On the back of the paper I found some words of wisdom from Papa. I can almost hear his voice as I read his advice:

  • "Find someone who will stick with you."
  • "Don't spend more than $5-now days $50 - without talking it over with your spouse."
  • "Women need more than men." 
  • "Whatever it is you're arguing about isn't all that important. Let it rest."
  • "At the lowest ebb the tide turns."
  • "Don't be afraid to be the first bird off the wire."
I smiled as I read the list because Papa forgot to mention the piece of advice he always gave me, "Make sure to check your oil."

Thursday, March 19, 2015

There Is Enough Grace For This

I have been reading Kara Tippetts' book, Big Love: The Practice of Loving Beyond Your Limits with a small group of women. It has led to some very good discussion as we examine kindness in our relationships - primarily parenting, but also in marriage, family dynamics and other relationships.  In one section Kara wrote about a time when her husband had to be gone for work for a week at a time - and she was at home pregnant and/or with very young children, and how that was hard for many reasons. She said that God placed a mantra in her head one year when her husband was gone, "There is enough grace for this. There is enough grace for this," and she began looking for grace, for joy, for the gifts in the hard things. (This idea reminded me of Ann Voskamp counting the gifts, even the hard blessings, in her book One Thousand Gifts.)

So for the past couple of days Kara's phrase keeps going through my head, "There is enough grace for this." At times it has brought me strength to complete the task. At times it has brought a smile to my face and a soft answer from my lips. At times it has brought me to tears because after I have thought of her phrase, I have found myself praying, "Help me, Jesus. This is so hard."

The last twenty-four hours with Bug have been difficult. His schedule/routine was off again this week because we had out of town visitors, and last night he could not get to sleep. Lots of crying. Lots of restlessness.  Today has also been difficult for him because of his lack of sleep as well as recovering from a routine change. "There is enough grace for this," I whisper to myself in these moments.

Tears poured out this afternoon as I was driving thinking of all of the things I need grace for in this season.

There is enough grace for the long hard days.

There is enough grace for endless questions from my curious kindergartner.

There is enough grace for the potty training which has mysteriously regressed the last two weeks.

There is enough grace for the season ahead of more schooling for The Hubs.

There is enough grace for the never-ending laundry.

There is enough grace for the Tuesday nights I am without childcare and miss the book study.

I didn't even realize the tears were flowing until Bubby said from the backseat, "Mommy are you crying?" I quickly composed myself.

Grace is a powerful thing. It isn't positive thinking for me, but a trust and surrender to the one Who is the Giver of grace. There is enough for each day. There is enough for each moment.

Sunday, March 8, 2015

What I read in February

I did not read as many books as I had planned to during the month of February. My excuse is that it is the shortest month - so I had three less days to read. Plus snow days with young kids in the house are different than snow days pre-kids. Basically they are just as exhausting as non-snow days with the added bonus that schedules are off because of cancelled activities. Hopefully the snow is done for the year.
Now without further ado, the books I read last month:

  • You and Me Forever by Francis and Lisa Chan - I love everything I've read by Francis Chan, and this is another book by him I would highly recommend. It's about marriage, but different than any other marriage book I've read. Skip the Dobson and Rainey books on marriage and read this one instead. The Chans are complementarians rather than egalitarians In their marriage but I knew this before reading it. My marriage wouldn't look exactly like theirs because of that fact, but there was still so much to gain from this book. 
  • Yes, Please by Amy Poehler - I had high hopes for this book. I think Amy is hilarious on tv. Everyone I know who has read this book loved it. It was just okay to me. It wasn't as funny as I thought it would be. (And maybe I shouldn't compare, but I loved Tina Fey's book when I read it a few years ago.) I got about 70-75% through Yes, Please before I had to return it to the library. Maybe it wasn't the right time in my life to read it, but I found it just so-so at best. 
  • Landline by Rainbow Rowell - Such a fun novel. I loved her book Eleanor and Park, and I liked Landline almost as much. The characters were enjoyable and relatable. Plus there was a time-travel aspect to the story ... and I love time travel stories. 
  • Gilead by Marilynne Robinson - There's a reason this book won a Pulitzer Prize for fiction. Beautiful, beautiful writing. I went through this book as slowly as I could. (I'm a speed reader AND I had a three week limit on it from the library.) An elderly man writing to his very young son about several things, but mostly it is him wrestling with some of questions most of us wrestle with. There is a scene near the end of the book that is still staying with me, days after reading it because it was so powerful and beautiful yet simple. My blogger friend, Brandee, told me about this book, and I'm very glad she did. 
  • Miss Rumphius by Barbara Cooney - This is a children's picture book. (We read a lot of those. I should start reviewing that genre as well!) Lovely read. Even if you don't have kids in the house, read this simple book. You will be inspired. 

I'm already a good portion of the way through three books I hope to review/recommend at the end of this month. What are you reading? What should I read this spring?

Friday, March 6, 2015

This Week (month and a half) in (smartphone) Pictures - week 12-17

The end of January and all of February went by without me posting pictures from my phone of our day-to-day life. Here are the highlights of our winter that I caught on my phone.

Tenth anniversary date night selfie.Thankful for our friends who watched our kiddos while we went out to eat.

A rare nap for Bugaboo.

Bug has really started to get into his play kitchen - this was a great day where his pretend play was the best it had been. He still prefers to just look at his cookbook, but this little kitchen has been where we have had the most success with some of those pretend skills/interaction skills he needs.

 A beautiful day in February playing in the backyard. This was before our snowy weeks.

 "Hey there, groovy chick. I dressed myself before co-op day. Mom didn't realize it was yearbook picture day OR that my shirt was unbuttoned like it was the 1970s." ~ Bubby, age 5

Boxes from Babushka are the best! Exhibit A.

Exhibit B. (Not sure how exactly he got himself in, but he definitely needed my help getting out!)


Bubby helping saute' the veggies for fajitas.

Valentine's box Bubby made at co-op. God bless kindergarten teachers who do the V-day boxes at school instead of having parents do them at home!

The best sugar cookies in all the land. Too good to only eat at Christmas.

Found this waiting for me somewhere in my house.

Night of the Decades theme night at Awana - I tried to dress for the 80's using things I had in my closet.  Wish my bangs would have been puffier. I was better at doing my hair when I was eight.

Trying out a gymnastics class with our other co-op. Fun, fun, fun for both of the boys!

Cars for the Pinewood Derby at church - Cookie Monster Car (Bug) and The Flash (Bubby).

Working on pre-jumping skills using the scooter.

Bubby made Jesus out of play-doh. Next to Jesus (not pictured) is a stegosaurus. I'm assuming Jesus is cool with this.

Finished kindergarten math this week. So proud of Bubby! Onto the next level before we break for summer in two months! (Can't believe how fast this school year has gone!)

Attempting a snow day (aka pajama day) selfie with Bugaboo. He was not really into it.