To Grandmother's House We Go

This weekend we went to Grandma’s house. This idea was met with much excitement by Little Bug- all week he had been looking at their picture and signing GRANDMA and GRANDPA. So off we went, with laundry and Frank in tow.

Little Bug had a great time with them. He really loves how rough Grandpa is when they play together- more of that good ol’ proprioceptive input. He also loves Grandma’s cooking and her laughter. He becomes such a comedian when he is there- doing everything in his power to make them laugh. I mentioned Grandma’s cooking, but really there is something magical about it. Little Bug eats and eats and eats at their house. It is unbelievable because normally he fights eating and is pretty rigid about it. But not at their house- Grandparents have magical abilities as they manage to get grandkids to do things that mere mortals- e.g. parents- can *never* get them to do.

Another highlight of the weekend was puddle jumping. Being that we live in the Pacific Northwest, there are plenty of opportunities for it. Ever since we first did that about a year ago, walking in the rain with him is tricky because he doesn’t get that there is a time and place for jumping in the puddles and on your way to school, work, or the doctor’s office isn’t one of them. We had a blast doing it! We found one puddle that went up to my knee- which meant it was at his waist- and just went nuts! DN being the part feline person who *hates* rain watched and laughed on the sidelines. I will have to get the picture of me and Little Bug that Grandpa took when we got home, because we were just soaked. I think about these things and hope that these are the memories that he will cherish later.

Unfortunately, Little Bug got horribly sick on Sunday night. He woke up at 1:00 AM vomiting. He proceeded to vomit every 15 minutes afterward and then he developed diarrhea. I felt so bad for him because he has a really hard time vomiting as he doesn’t quite get how to motor it out of his mouth. We went through 5 diapers, 5 sleepers, and 2 baths before 3:00 AM. But, it seemed like someone flipped a switch at three and he went back to sleep.
He made some really good progress this weekend. He learned to say HALP (help) while signing HELP. He used to say “See, See” when signing it, but Saturday I taught him to say Help. He also began mimicking- something that he has been really delayed on. He and Grandma had a great time doing this.

Our darkest hour- see the vomiting episode above- ended up being our brightest hour for communication. He couldn’t tell us before that he was sick and might vomit, so it was like holding a ticking time bomb of the gastrointestinal persuasion in your arms. Sunday night, although he wouldn’t throw up in the trash can, he figured out that before he puked, if he signed HELP and pointed to it, we would know what he meant. This was huge because it was the first time we were able to know what his needs truly were and be there for them. For most of his life, we have just been guessing- educated guesses, but still guesses. I heart sign language.

We have a new sign- RUN. We also have a couple new words or “word approximations” as his therapists would call them- HALP, Uppee- Puppy, and La Lou- which is Little Buggish for I love You. That last one absolutely warms my heart. I am thinking about getting it tattooed somewhere so that I will always remember it.

There are times when I can’t help but wonder what parts of his every day cute little boy life we miss because of ASD. You know that part of life that doesn’t revolve around sensory issues, feeding challenges, vestibular input, and speech delays? I know, it sounds crazy, but it still exists. We try to every day make sure that Little Bug gets time to be Little Bug- tics and all. I know I have to remind myself not to worry so much and to sometimes just be. That one day without therapy isn’t the end of the world. Again, it’s a fine balance and I can’t say we achieve it always.

Little Bug's Best and doing the best for him

With any child, you want to make sure you are doing your best to get them to achieve their best. Often times, with ASD and our family, it is hard to figure out what the best for Little Bug is. We have started two therapies- Autism Education and Play Group- and already a vast improvement has shown. We do our own kind of speech therapy at home using sign language, Signing Time, and the PROMPT method that his Autism Education teacher uses.

At times, it seems like too much. I put myself in his shoes and wonder what it would be like if everything I did all day everyday was hard. I wouldn’t want to do it. At the same time, I look at what needs to be done to help him reach his full potential. We are on a high wire without any training or net and are desperately trying to hold on. I worry that we are missing the fun of being on the high wire at times as we have become too focused on getting to the other side. At the same time, if we stop, it is all too easy to fall off.

There are times when this responsibility makes me feel so small and very alone. You can read my other posts to see that Little Bug’s vocabulary is based on how quickly UPS can get signing DVD’s here. We try to be as consistent as possible- as to us that is paramount for Little Bug and has helped him. But we are human and we fail- miserably sometimes.

At the end of the day, I can say that each and every decision we have made has been what we thought was best for Little Bug at that time. That doesn’t mean that it won’t change- people change, relationships change, reality changes, and so we too must change.

One of my goals for this blog is to be able to honest with myself. Another goal is that this can be a resource for other families. The first goal will always be difficult- you deal with things and sometimes that means avoidance, skewing, ranting or accepting. The second goal is far easier. We are working on making a short video of Little Bug’s signs to show people that it is possible. When I heard sign language, at first I rolled my eyes and thought RIGHT. Not because of him, but because of sign language. It is an exacting language and can be difficult for grownups to learn, let alone a mostly non verbal toddler. Little Bug’s best bested us and I know never to doubt, but to always believe him.

Another item we are hoping to post soon is his picture schedule. Little Bug has a hard time with transitions and likes things to be predictable. I feel so bad for him as life never is. What we can predict- in a foggy Ms. Cleo sort of way- is an idea of what each day will look like. We have documented them in pictures and use it to help him with his day. While he still has struggles- he would prefer to never have his diaper changed and not wear cloths- this schedule has helped. It has minimized his sensory issues with going grocery shopping as he needed a concrete idea of where we were going to prepare himself. (I could write a whole blog about the grocery store, advertising and marketing, and SID, but for now, I will leave it.)

I remind myself daily that each day is a new day- of opportunity and chance. Each day, I must do my best- for me and for Little Bug and DN. As at the end of the day, even if it didn’t work out how we intended, we always have his best in mind.