Wednesday, April 29, 2015

an April update of sorts -

April has been a quiet month for me and a somewhat emotional one.

I am pretty sure I spent some time grieving Bugaboo's diagnosis.  I hear this is normal. I don't know that I have gone through the four stages, but I have had some sad days.

The Hubs got into the nurse practitioner program, so starting in June he is a full time student again for just 5 more semesters. I am overwhelmed by all of this. (He knows. We have had many discussions on the topic.) The decisions we are making on funding this schooling are at a waiting point right now - waiting on hearing back about scholarships and grants and loans - and figuring out what I can do to still stay home with the boys yet earn some income.

Long term the NP direction has been what we knew we were wanting to do, and it is what makes the most sense long term financially (and career satisfaction wise) for us. Short-term every option causes me to have anxiety, including the unreasonable option of not doing the NP program. All of that to say, pray for wisdom and discernment for us. Pray for open doors and shut doors and insight to know the difference and peace. I really need some peace about all of this.

On top of those two life stressors, right before Easter I got a letter from my dad. And when I contacted him as he asked and gave him a chance to do the right thing, it was business as usual with him. Nothing has changed in the last year in a half, in the last three years. Nothing has changed in the last twenty-plus years. The conversations with him took an emotional toll on me for a few weeks. I don't write this out of anger or hatred, but just sadness. How someone can walk away from their daughter time and time again is beyond my comprehension.

The Hubs told me, before I contacted my dad, that letter isn't worth toilet paper. But I still reached out with my speck of hope. And when I reached out, my dad said he still needed a few more days. But he still hasn't had the conversations he has needed to have.

So I have shut that door. At first I worried that it was not a very Christian thing to do, to shut that door, but I realize I am not slamming the door, I am not locking the door. I am shutting it and walking away because he knows what needs to be done to open the door.  I keep coming back to the verse that says "Don't cast your pearls before swine." My heart can't be trampled on again. It has to be guarded. That in itself is a heartbreaking thought - to have to guard your heart from a parent.

Of all the words to have for the year... my word for the year is hope. I haven't really written about it yet. A lot of things in my life feel hopeless. Many situations feel hopeless, too. But in these situations I am slowly coming to realize my hope isn't in a thing or situation or a relationship or for someone to do the right thing. 1 Timothy 1:1 calls Jesus "Christ Jesus our hope..." and I'm realizing that is what my hope is. That is who my hope is in. Not just for when I die, but of the day to day, for the difficult and the mundane.  Pray for me as I learn to rest in the hope that He is.

It has been a good week though. The weather has been wonderful. Bug has made some huge gross motor skill gains lately as well as slow and steady progress in speech (please pray for his fine motor skills to progress - we seem to be at a standstill). Bubby's reading is fun to listen to these days, and almost daily he asks really good questions. I get to be with my kids every day, and while it can be exhausting at times, I love what we do. I'm sitting here on a Wednesday night after all of our activities thinking, "This was a really good day. This has been a really good week." The simplicity of routine and sunshine and reading books and singing songs is just what my heart needed.

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.