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.

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