Good News!

As it was the end of the year, I was considering doing a post reviewing what has happened with Little Bug this year. After beginning to write it, I realized how incredibly long it was, so I decided to keep it short and sweet:

January- His lymphatic malformation appeared to be returning and he had another surgery consult. We were given the good news that it was lymph collecting in his cheek and would work itself out.

February- Got the last of his baby baby teeth- those pesky molars.

March- I began to wonder if something was wrong. It was the first time that Autism crossed my mind, but inevitably, Little Bug would do something genius and I would con myself into believing that I was paranoid.

April- Little Bug got to have Ama come up and stay at our house. Nick and Lennon got spoiled rotten by her wonderful cooking and company while I went to India for business. Ama heard Little Bug's last sentence for quite some time- I said shit! Little Bug had over 100 spoken words and used sentences all the time.

May- I got back from India and had a shock. After spending time with children there and some friends' kids, I looked at Little Bug with a new awareness. I could no longer lie to myself. I called Ama and balled and she said we will get through this. Nick and Little Bug came home and we had the talk about Autism. We began to really notice that he lined up objects and flapped.

June- Our journey into the world of Autism began. We went to our pediatrician and were so nervous. Little Bug wandered around the room, biting himself and playing with anything shiny. He then lined up all the magazines. Our doctor looked at us and said that he agreed, filled out a paper and sent us on our way. We had our screening with the social worker

July- Little Bug's second birthday at the Nas Nas. We had a blast and for a while, put our thoughts of ASD on the back burner.

August- Little Bug had his OT, speech, and hearing evaluations in one week. We realized that his vocabulary had whittled down to 10 words. 10. It was the first time we heard the words "severely delayed", "obvious retardation of..." They stung and left us gasping for breath and help. We also got a diagnosis- ASD. It was one of the moments where you know what's coming, you really do, and yet the shock still hits you.

You know the rest of it.....

So the good news is that our insurance has made a change. There is no longer limits on how many appointments a child can have if they have a neurodevelopmental delay. YAHOO!!!!!! We are going to be able to get him the help he needs.

Happy New Year!

Vacation Recap

My vacation is over. While that makes me sad, as I really enjoyed all the extra time for family, I have a feeling that by going back to work, I will be helping Little Bug. He will get back into the swing of things and back to his normal schedule, well minus school. Did I mention before that we have three weeks without school?

We were horribly unprepared for this long of a break from school- you know, being mere mortals and all. He has, for the most part, done very well without school and we have even been able to use this time to work on something new- falling asleep by himself. He did this a couple times at Ama and Apa's house (that's grandma and grandpa in little buggish) and now does it for naps and bed time at home too. One thing we were not expecting was for him to ask to go to sleep. Oh yes, you read that right.

In nights past, it has been a multitude of warnings followed by an hour plus of struggling to get the little guy to sleep. Not no more. He has asked for the past two nights to go to sleep. He signs sleep and makes his awe sound and then climbs into bed and sticks his arms in the air. That is your queue to out his shark blanket on him and then place shark on one side and fish on the left. He then takes his milk and binky, gives you kisses and hugs, and goes to it.

Nick and I were struggling with this new ritual. It is bitter sweet as I am sure any parent can imagine- one more thing he can do by himself. One less dependency. A little less alone time with him. We are really happy for him and know that it is the best. It just hurts a little, the same I imagine when your kid goes to school by themselves.

Over the course of vacation, Little Bug has added a flurry of words to his vocabulary-
Fuck- truck
Fack- Track
Fra- Crash
Frank- our dog
Nut- Nick ( fitting name, huh? :) )
Bath
No- Snow
We we- wet
Butt
tree- Train
Gee- Green
Ama
Apa
Dohmas- Thomas
Harold
Round
Chi- Chi
Fridee- French Fry
Other

He has also tried a lot of new foods and textures-
Marshmallows
Ham
cherry cordial- made him cry and throw it
Spinach
Baked Chicken- no dice
Reese Pieces

His self injuring has changed. I am not sure if it has to do with the Ps and Qs and chewie, but since he has them, he has stopped biting himself. But, and there always seems to be one, he has begun hitting himself in the head with his hands. I don't know why, but that seems less alarming and more like stimming than self injuring.

I have to admit, this vacation has had some hard times like when his other grandma gave him underwear in his stocking, because as she says, all the other kids are potty trained. It made me cry and it hurt. But we will get there. Another hard time was to watch him with E, our friend and old roommate's older son. E has a little brother J who is one month older than Little Bug, but there is a light year of difference in development. Hanging out with Little Bug usually causes J a lot of stress. E was trying to play cash register with Little Bug like he does J- How much does this cost and Here's 20 bucks. J will give a price and carry out the transaction. Little Bug just wanted to run the money in the credit card slot over and over again. Its one of those times that I think will always hurt. Not from jealousy or envy, in fact I can't label the emotion. But it is raw and there. I imagine there are lots of parents who feel this way and those with special needs children probably just are confronted with it more often. And yet, I am unprepared, dear friends. Every time it hits, I am left feeling small and helpless and almost panicky.

In the end, I think of were he was and where he is and it passes. It always will.

Ah, vacation!

I am on my first vacation that doesn't involve major medical emergency in three years. It started off perfectly- with a ton of snow. Tacoma had a foot of snow by the time it was done and it was beautiful. Little Bug had so much fun playing in it. We did that at least twice everyday.

Our vacation continues by coming down to Grandma and Grandpa's house. Little Bug is so happy here- he didn't take as long to warm up to them this time and asks for them now. "Apa? Ama?", where the first things out of his mouth this morning.

We had family Christmas last night and Little Bug actually opened some presents. We only had to go on two walks to help him deal with the stress of all the people. We are really proud of him- he only had two minor meltdowns and he was able to tell us that he needed a break.

Being that today is Christmas, Nick and I are exhausted as we stayed up until midnight building the Thomas the Tank Engine shed and track set that Little Bug got for Christmas. Of course, Little Bug woke up at 5 and we had to restrain him until 630. When he finally came downstairs, he saw it and said, "Wow....."

We haven't talked to him since. We might talk to him soon, but for now, we are going to let the perservations and the good times roll. Wow indeed.

Dropping the A word

I read an article yesterday on CNN regarding how to tell your child that they are really sick. It made me think, how and when do you tell your child they have Autism. I can't recall in all the Autism books I've read, discussing how to inform your child of this.

For me, when I think about telling Little Bug, I don't want the conversation to be about limits- "Because of Autism, you can't....". I don't think that's true. I may know what the odds of doing something- speech, dressing or toileting independently, living on his own, getting a job are, but I don't know if I would tell him that he can't do something because someone says the statistics show that he won't.

I have a feeling that although this isn't necessarily applicable right now, I will mull on this for a while.

The past few days have been a roller coaster ride of severe ups and downs for Little Bug. We think that is because he hasn't gone to school in a week due to the weather. We try, we really do, to do the magic that Therapists A and L do, but we are inadequate for we are merely human. (Seriously, some of the things they can do is awe inspiring and make me wonder if they are other worldly.)

He has become very routinized in everything- he has to put the puzzles together in the same order each time, eats his dinner in the same pattern, and has been creating lines of everything. He had the mother of all meltdowns yesterday because he couldn't get the little snow balls that he had created to line up perfectly. He laid face down in the snow and refused to get up. At 32 pounds and over 3 feet tall, he is becoming a physical force to be reckoned with when he becomes Captain Noodle Boy! (His super power is a complete lack of control over his body allowing him to pool like liquid into a puddle of a toddler) I briefly thought about donating him to charity last night when he bit the dog, but reconsidered when he said sorry to the dog and gave him a hug.

On the upside, we tried a new food- Cars Chicken Noodle Soup without the Soup. He ate half a can of it. The only new road bump for sensory issues is his increased tactile and auditory sensitivity. He has begun covering his ears at airplanes and the vacuum and now cries when something gets on his hands.

I think we will survive 3 weeks without school.

You're the devil in disguise

Little Bug often lives up to this with his therapists. We will tell them that he has problems dressing, biting, and with sharing and yet with them, he is fine. They have said that usually kids go through a honeymoon period with their therapists. As a parent, this is frustrating as all hell because you know that your kid is having a hard time with something and yet when help shows up, not a problem. When they leave, suddenly shoes and socks become an issue and giving a cat a bath would be easier than Little Bug. These are the times that you think things like Why can't he just put on his damn shoes and then instantly feel like a bad parent.

We discussed it with them in depth as we feel like they aren't able to maximize their time with him as he doesn't have the really bad outbursts that he has with us. Their solution was somewhat surprising- tape it and like a football coach, they will go through play by play and tell us how we can improve what we are doing for Little Bug. Not 24 hours after our discussion, we have three tapes- getting socks on, getting boots on, and putting on a coat. I imagine to the neighbors instead of doing those activities, it sounded as though he was being tortured or murdered or both. Nope, just getting dressed folks- nothin' to see- move along.

(Miss Cleo moment- I am seeing a *huge* change in topics and a slight chance of foul language.) Does anyone have a family member- or several- who just don't get it? They don't get why your kid can't just eat dinner or can't just put on their damn shoes or any other thousand examples. This has become a huge problem for Nick and I and his parents. Nick's step dad's family always gets together the weekend before Christmas. Unfortunately, this involves 30+ people in one house. Little Bug has a hard time visiting our friends who have 6 in their family. Neither Nick or I can attend because we both work.

We have tried explaining that new situations are extremely hard for him and that we aren't able to just go do things on a whim. We have to prepare and explain and have pictures in order to talk up a situation in order to minimize the meltdown- notice I didn't say avoid. Of course, since it is the holidays and apparently you must do all the holiday traditions you can think of in the shortest amount of time in order to be a good person, Nick's family has forgotten this and everything we have told them about Lennon.

His mom called and wanted to know if we would let them take him to this party! (excuse me as I roll around on the floor laughing and then wiping the tears from my eyes) NO!- that is the answer. Can you imagine giving your mostly non verbal toddler to people he doesn't see that often knowing that he will be taken to meet over 30 people he has never seen before and be expected to open presents without the two people he depends on most in the world? NO! That would be hard for any child- typical or not.

Now, excuse the hell out of me, but I am so tired of explaining the same damn things over and over again. It reminds me of what my parents used to tell me- The answer hasn't changed since the last time you asked this question, which by the way was 5 minutes ago. If you ask again, the answer will still be the same, but you will be grounded. SON OF A BITCH, this is frustrating.

I put myself in their shoes and I can empathize- they have dreams for what they would experience as grandparents. They would see their grandchildren anytime they wanted and be able to flit off on a whim for any number of fun activities. They would be able to do all the traditions they had when they were little kids and show their grandchildren what was important to them.

Well, you know what, we had dreams too. Dreams that didn't involve therapies 4 times a week and then follow up 7 days a week. They didn't involve picture schedules or having every minute of every day mapped out. They didn't involve sensory issues or regression. They didn't involve staying up at night gripped with fear because you don't know how you will pay for the therapy your kid needs.

But you know what, the old dreams are gone and it is time to make new ones. This happens for all parents regardless of whether your child has special needs or not- you want them to be good at sports and they aren't. You dreamt that they would be a Christian and they decided nope, not for them. We have to move on and adapt. By trying to adapt your children or grandchildren to fit your dreams, you are creating misery for everyone involved.

Catching up

That is what we were told yesterday about Little Bug- he is catching up developmentally and in a lot of areas will be completely caught up by the time he is three. Therapist A, who spends the most time with him, says that he has shown tremendous progress and at times believes that perceived cognitive delays are due to how information is asked for or presented and not whether he is retaining it.

She did state that in certain areas- like speech and social development- he is still significantly delayed. She also said that for memory and problem solving he is advanced.

We wrote his new goals yesterday-

1. Two word sentences. Waiting him out and prompting him with sign will be our technique.
2. Descriptive words. I don't get this one as he has two descriptive words in speech- EWW and Hot- and several in sign only.
3. Colors and Shapes. He can match like nobody's business and knows his colors. If you ask him to point to the blue whatever though, no dice. Same with shapes- line up three and he can't find the circle if you ask for it. But he can recognize the difference, again when matching, between a parallelogram, square, rectangle, and rhombus. Same with oval and circle.
4. On, under, etc. If you tell him to look under x, he wanders around and doesn't seem to understand these words.
5. Part, Purpose, and Category
6. Yes and No. For example, holding a dog and saying, "Is this a cat?". Also, more concretely, answering questions. If you ask, do you want a cookie, he will say no and then cry when you don't give it to him. If you were to ask, do you want to eat the cookie, then it would have been a yes.
7. Flexibility. Encouraging this more in play and speech as he is very routinized.
8. Eye contact

I am so proud of all the work he has done. It shows every day.

In other news, and probably more importantly to Little Bug, he has new SHARKKKKS (he develops a lateral lisp whenever he says it). We went to visit some good friends and they got him a 24 piece fish jigsaw puzzle, a shark pillow and blanket. He carries the pillow with him yelling MY SHARKKKKS and wants to sleep under the blanket. We figured the puzzle would take him a couple of weeks to figure out, but he can do 20 of the 24 pieces by himself, so probably not.

He did again!

Roll. Light. On.

All spontaneous, quite out of the blue actually. We had sausage for dinner and they were cut in little circles. He grabbed one and rolled it around his plate saying, "Roll....Roll...Go eat, eat.... Roll."

I am at a loss for words- this is the third day in a row that he has done something unexpected and left me with tears of joy running down my face while i stare at him with a bewildered look on my face.