Wednesday, December 31, 2008
Good News!
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!
Tuesday, December 30, 2008
Vacation Recap
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.
Thursday, December 25, 2008
Ah, vacation!
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.
Friday, December 19, 2008
Dropping the A word
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.
Wednesday, December 17, 2008
You're the devil in disguise
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.
Tuesday, December 16, 2008
Catching up
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-
- Two word sentences. Waiting him out and prompting him with sign will be our technique.
- Descriptive words. I don't get this one as he has two descriptive words in speech- EWW and Hot- and several in sign only.
- 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.
- On, under, etc. If you tell him to look under x, he wanders around and doesn't seem to understand these words.
- Part, Purpose, and Category
- 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.
- Flexibility. Encouraging this more in play and speech as he is very routinized.
- 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.
Saturday, December 13, 2008
He did again!
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.
Friday, December 12, 2008
Shock and Awe
Look
Sheep
Cheese
Ow-si (Outside)
Puzzle
Helper
Bath
Yuck
Eww
But there's more- these were all spontaneous. That's right- no repeating words, no prompts of "Look and Listen. Little Bug- SH- EE- EP. Little Bug do- SH- EE- EP."
What was even more flabbergasting was how casual they came about- he walked up to me with a piece of cheese and said- CHEESE! and then just wandered off leaving me to stand in the middle of the living room with my jaw on the floor and tears streaming down my face. And it just kept escalating. We watched Toy Story last night and Bo's sheep are being threatened by RC and Little Bug looked at me and said, " Daddee! OH NO SHEEP!"
I don't know what happened and I am afraid if we start analyzing, we will only make things more difficult. Please read this post from Both Hands and a Flashlight as it perfectly describes what I mean:
http://www.bothhandsandaflashlight.com/2008/12/04/unconscious-competence/
(Psst- do me a favor and tell whoever you believe in- the universe, God, Lord Shiva, buddha- thank you.)
Thursday, December 11, 2008
Holy Word Explosion Batman!
Wednesday, December 10, 2008
Autism and the Holidays
Tuesday, December 9, 2008
Christmas Trees
We put it up yesterday and spent most of the day saying one of the following phrases:
- Christmas lights aren't for eating- for looking
- Don't put your eye on the Christmas tree
- Don't chew the ornaments
- Please get your legs out from inside the tree.
These all sound like minor things, but at times it does get maddening. We replaced all our ornaments with shatter proof ones so that he can't hurt himself. We have tethered the tree to the wall and minimized the number of ornaments. Hopefully, he will get used to the newness of this. Last year, he didn't do much of the flapping and didn't really bother the ornaments- he would just stand in front of the lights and look out of the corner of his eye at them.
We went to Zoo Lights and he has such a great time. They now have a shark exhibit and he loved it! We sat by the sharks for about 45 minutes or so and then saw the fish for about 30 minutes.
Saturday, December 6, 2008
Moooooo!!!!!
Although he can't tell us much, what he can say is fascinating to me because of the logic behind it. For example, he uses MOON and WALK even though he knows night. He signs SPIDER and says BAA-AAA! If we tell him it is time to be quiet and go to sleep, he stops talking; instead he simply signs away in subversive protest. His logic astounds me and makes me crave knowing more.
On a much different topic, Little Bug will run out of therapy coverage by insurance after 4 months as our policy, which does include a neuro-developmental clause, only allows for 36 specialty appointments. Nick and I have thought of many options, some include asking for an Independent Medical Review, get training from his current therapists in order to do it ourselves, and not seriously but as a desperate idea- moving. That last thought made me want to know if there was a way of knowing what you are getting into in terms of ASD care before moving. I provided the legislative link yesterday and today i wanted to provide another. It is the Easter Seals Autism State Profile page-
http://www.easterseals.com/site/PageServer?pagename=ntlc8_autism_state_profiles
Hopefully, if you really are going to move, this will help you.
Thursday, December 4, 2008
What do you want?
http://www.ncsl.org/programs/health/autism.cfm
I have to admit, I was pretty shocked when I looked up my state. The report showed that many items failed and some were vetoed. The last action taken on legislature specific to Autism was in March of this year. At first I was so pissed about this- blindly hateful even. Then I realized- What would I ask for? What am I doing to help it become a reality?
Anger only motivates for so long, until you crash in burn. You have to have a long term source of fuel. I think I found mine.
Little Bug had therapy yesterday and it went really well for the most part. He is having a hard time being all done with an activity or item and seems to be focusing on items that involve proprioceptive input. Other than that, he had a great day. His therapists are recommending that we write new goals for him- as he has met about 75% of his other goals.
He now has 60 words, of which 46 are unprompted. It seems that in speech, we have reached a plateau in acquiring new words, but are still gaining in how many words are unprompted. In sign language, the upward trajectory continues- we are at 111 signs, all of which are unprompted.
Wednesday, December 3, 2008
Preoccupation with Certain Topics
Now, I realize that many children have favorites- a favorite show or animal, place to go or thing to eat. Favorites that at times can border on obsession. The difference here is that it is an all consuming obsession- actually three:
- Fish- Whenever we are out and about, he asks for fish. As I have mentioned, he has a map in his little brain that keep track of where the fish are. We have had to change how we get from our house to certain places as driving past places where the fish live without stopping result in a meltdown and Little Bug will often try to unbuckle himself from his car seat. Needless to say, he talks about fish constantly- not sure what about, but I do know it is about fish. We are unable to go to the grocery store without a meltdown, as apparently there is a federal law that says all grocery stores must have a pet store that sell fish next door.
- Buses- He now firmly believes that whenever we are going to go somewhere, we are going to go by buses. He will stand by the door 3 to 5 times a day and yell bus. He will then gather every one's shoes and line them up and physically try to make you put them on so he can go on a bus ride. Walking the dog now results in meltdowns because we aren't taking a bus to do it.
- Sharks- One would think that this should be part of fish, but this is a very separate obsession. He watches Discovery Shark programs, baths with his sharks and discusses them at length throughout the day.
Last night, Little Bug woke us up every hour to discuss fish. He would tap me until I was awake and say, "Daee, Fish! Fish? Fish, Daee." Every. Hour. All. Night. Long. To me, this has passed over favorites and into the land of obsession. An obsession is defined as- Compulsive preoccupation with a fixed idea or an unwanted feeling or emotion, often accompanied by symptoms of anxiety. A compulsive, often unreasonable idea or emotion.
Uh, yeah, we have an obsession. His little voice gets frantic and he appears anxious and nervous when discussing these topics. If anyone has ideas about this, please let us know. I don't think I am a hard ass, however I think it is unreasonable to indulge a trip to the fish store to get a gallon of milk. I am all about picking my battles, but at some point, we have to find a solution rather than assuage the problem.
Tuesday, December 2, 2008
Not sure if this is progress, but it was funny
Last night we attempted to go to sleep in the usual manner- which means we watched a movie together on the couch. When that didn't work, we tried going to the bedroom and laying down. I rolled over on my side so that I wasn't facing him. If he sees that you are awake, it becomes comedy hour.
I was almost asleep when he kicked me and cried, "Help Daee!" I rolled over and noticed there was something wrong with his sleeper. I tried to zip it up and it was stuck. But then I realized, it shouldn't be unzipped and unsnapped.
I called for Nick and he came in and turned on the light. I wish we had taken a picture. Little Bug had unzipped his sleeper down to his knee. He then attempted to pull it off his shoulders and got the top of it stuck at his elbows. Apparently, he gave up on that and tried to take off his diaper but could only get it un-taped.
So mental picture for you- he was standing in the middle of the with his sleeper zipped open to his knee- one leg halfway exposed and the other completely covered. His belly, shoulders, and chest were exposed, but his arms were pinned to his sides by his sleeper. His diaper was bulging in the back and hanging out the front. I laughed so hard I cried.
This is one of those moments that I wish I could ask him some questions. WHY? What were you hoping to accomplish?
On the bright side from the bed's and parents' perspective, at least he got caught. It could have been worse. He could have succeeded. Then we would have been in trouble as I am unsure if Nick would have noticed his lack of pajamas when he came to bed.