Both the boys are on their break and it is nice to have them both home. I did the last of the Christmas shopping today and I had some time to myself. Most of the parents there did not even have to think about their kids interacting with them, took it for granted that their toddlers were able to eat food off their plates, and a trip to the bathroom was no effort at all;and possibly even a little annoying. These things are made so difficult for Nick. Not that he seems to mind, but as he is getting older the gap seems to get wider between him and a normal 3yr old.
Lots of good things have happened over the last year though. Big steps forward. He has become more mischeivious-which despite being somewhat irritating at times, is quite a good thing as far as development. His head banging seems to be in a lull for now-which is a godsend. He started his second year in preschool, and seems to be moving right along with the goals that were set at our last IEP meeting. We started him on the GF/CF diet after visiting a nutritionist, a feeding clinic, AND a gastro-all who said there was either "Nothing to worry about" or "He is too severe for us"..regarding his poop and eating issues. The diet has seemed to really help with his poopies, and his SLP gave us ideas on how to introduce foods to him SLOWLY. We bought some gluten free cereal, and I put some in a baggie and smash it with a hammer to break it into bits. I then mixed it with the rice milk and low and behold, he ate some of it!!
We finally got the referral from his Dr for his Occupational therapy. We will start that whole process after the new year. It will mean another evaluation, more paperwork, but hopefully it will go quickly and we can press on with more services for him.
In the meantime; we are enjoying our time off from school and filling or days with playing, shopping, watching Christmas movies, and baking cookies for Santa. We wish everyone a Merry Christmas and a Happy New Year! Hug your little ones and enjoy this time with your families. See you all in 2008!!
Sunday, December 23, 2007
Friday, December 07, 2007
Fantasy Lights
We took the boys to see the Christmas lights they have in Spanaway Park last Sunday. It was just what Nick LOVED. All those blinking, and colorful lights. He simply was in heaven-we could hear squeals and giggles of pure delight coming from the back seat. He was just so happy. He has completely gotten over his cold, and is back to his joyous old self. Including waking up at 3am, turning on the bedroom light and spinning his favorite toy....much to the dismay of his sleepy family. He goes through periods like this where he is up at 3-4am just doing whatever. I have heard tons of out and out laughter coming out of his dark bedroom-which begs the question...who or what is he laughing at?? It seems that this is a world that only Nick inhabits, and us "outsiders" are excluded. All I know is the air must be pretty funny at night. His glorious laughter is simply wonderful-even at 4am.
Nick has also made some progress in his self-help skills. He can now pull up his pants(he still needs help; as he only pulls the front),can pull his shirt over his head to get it off or on, and Mike has even taught him to open the fridge and get his milk out upon request. We are still in search for a home therapist, but we have a couple of leads that sound promising. His Dr also called me back today saying he put in a referral for an Occupational therapist. This will help Nick with his toe-walking,ear flicking, and all the other "inappropriate" stims he does. He is going to the speech clinic in University Place now every Wed. His schedule is pretty packed on his "day off" from pre-school. He has to be at UW for ABA therapy at 8:30am, that lasts one hour, after that, it is off to speech therapy for another 30min; by that time, it is almost time to pick up Michael from school. I have no idea of where we will fit in the OT, but we will. Other than that, not much else is going on. Here are some photos from last weekend.
Saturday, November 24, 2007
Thanksgiving update
Our whole house has been sick with a cold for the last week, and poor Nick was just miserable. He missed school all of last week, and missed his Wednesday therapy. We do have some good news to share though. He will be starting speech therapy on the
28th. That will also be on Wednesdays after his UW sessions. We also have a tentative interview/meeting with a therapist who comes to our house set up for Sunday. I have been on the phone with a couple people this week regarding getting this therapy paid for by Uncle Sam. It is through the respite care program and a couple other branches are willing to pay for 40 hours a month. But, the one that I am in will only pay for 20 hours a month, and will only cover up to $10 an hour. So, it will more or less fall on us to cover the majority of the private therapy. I left a message with Nick's doctor on Tuesday, but I have not heard from him yet. No surprise there.
Other than that, nothing new to report. He really has been just battling this darned cold all week. His sleep has been all jacked up, and so has his eating. He is getting back to normal-but it takes him time.
28th. That will also be on Wednesdays after his UW sessions. We also have a tentative interview/meeting with a therapist who comes to our house set up for Sunday. I have been on the phone with a couple people this week regarding getting this therapy paid for by Uncle Sam. It is through the respite care program and a couple other branches are willing to pay for 40 hours a month. But, the one that I am in will only pay for 20 hours a month, and will only cover up to $10 an hour. So, it will more or less fall on us to cover the majority of the private therapy. I left a message with Nick's doctor on Tuesday, but I have not heard from him yet. No surprise there.
Other than that, nothing new to report. He really has been just battling this darned cold all week. His sleep has been all jacked up, and so has his eating. He is getting back to normal-but it takes him time.
Saturday, November 17, 2007
Progress Report is in....
Today we got a report on Nick's progress with his I.E.P. in preschool. I will explain the "grading":
A 1 means: Not applicable
A 2 means: No progress made
A 3 means: Little progress made
A 4 means: Progress made;goal not yet achieved
A 5 means: Do not anticipate meeting this goal
A 6 means: Goal met
Here is his progress report from the school:
1. Nicholas will experiment with cause and effect when playing with 80% success for 2 consecutive data days. (4) (stayed same since last year)
2. Nicholas will independently nest four containers, or stack rings or blocks of graduated sizes with 100% success for 2 consecutive data days. (6-Goal met) (up from 4 last year)
3. Nicholas will demonstrate appropriate use of toys that have different properties on 3/4 opportunities w/ no more than 2 prompts. (4-same as last year; but he is interacting more as opposed to spinning)
4. Nicholas will shift attention from one object or activity to another with a)no more than 2 prompts by Oct 07 b) with 0-1 prompt by Feb 08. (6-Goal met)
5. Nicholas will play comfortably and appropriately in a small group with minimal prompts at 80% success for 2 consecutive data days. (6-Goal met. Up from a 4 last year)
6. Nicholas will follow classroom routine with no more than 2 adult prompts at 80% success for 2 consecutive data days. (4..same as last year; but more active this year)
7. Nicholas will indicate his wants and needs through gestures,signs,pictures,or verbal response on 3/4 opportunities with no more than 2 prompts (3...up from 2 last year)
8. Nicholas will express appropriate affection for peers and /or adults with no more than 2 prompts at 80% success for 2 consecutive data days. (4..smiles and laughs! Up from a 3 last year)
9. Nicholas will respond appropriately to social contact made by familiar adults with no more than 2 prompts at 100% success for 2 consecutive data days. (4..responding to name!)
10. Nicholas will appropriately express various positive and negative feelings with minimal prompts at an 80% success for 2 consecutive data days. (3...up from a 2 last year)
11. Nicholas will sit during circle time, small group time or other appropriate times for a minimum of 5 minutes or until the activity is completed; wait to be excused or ask appropriately to leave the activity with 80% success for 2 consecutive data days. (6-goal met)
12. Nicholas will choose a desired toy/activity using pictures,signs,or verbal request from a field of 4. (4+ on that)
13. Nicholas will imitate mouth movements/vocalizations/words by Feb 08. (4+)
14. Nicholas will identify an object/picture from a field of 3 by Feb 08. (4+)
Overall, he is doing far better than last year. On another note, our in-home therapist is not able to drive to our house-so we were back to square 1 by Monday. I asked someone in our autism group if they knew of anyone; and I got the names of three people. I will call them this weekend and set up a time for interview. This expense will be out of our own pocket-as our insurance does not cover private sessions. It will be roughly $25 an hour (4 hrs a week in home; or $400 a month). Mike and I discussed in length our finances to cover this. There is no way we can do without this therapy. Nick is making so much progress with the therapy and diet, I truly believe he will be high functioning-but he can't get there without help. We have cut down our cable to $50 a month, and doing some strict grocery shopping, and basically doing without anything we don't NEED. It's for Nick. We talked for more than an hour about all this. Mike has rarely spoken of "God", but he did this week. He said that God has a plan. We don't know what yet, but he does have a plan. It was kind of nice to hear those words come from him for a change. Usually it is me saying that.
As for Nick; that kid has an amazing memory. It might even be a photographic one. We can put a toy up, go out of the house for a few hours, and as soon as we get in he is making a bee-line for the toy. He remembers where it should be, and if it was moved while he was gone, he will look under every nook and cranny, and then take us to all the places he knows we hide things. I came home yesterday and found that he had placed his toys in an oval pattern on the floor of the "therapy" room. Blocks were in a line,things were stood up, and some things managed to get "clumped". (I.E. groups of 3 plastic fish)One of his teachers greeted him by patting him on the back the other day...Nick replied "No Hitting" to her. He has informed me on two occasions that he was "all done" eating. Our boy is starting to speak his mind...and what an interesting mind it is!
A 1 means: Not applicable
A 2 means: No progress made
A 3 means: Little progress made
A 4 means: Progress made;goal not yet achieved
A 5 means: Do not anticipate meeting this goal
A 6 means: Goal met
Here is his progress report from the school:
1. Nicholas will experiment with cause and effect when playing with 80% success for 2 consecutive data days. (4) (stayed same since last year)
2. Nicholas will independently nest four containers, or stack rings or blocks of graduated sizes with 100% success for 2 consecutive data days. (6-Goal met) (up from 4 last year)
3. Nicholas will demonstrate appropriate use of toys that have different properties on 3/4 opportunities w/ no more than 2 prompts. (4-same as last year; but he is interacting more as opposed to spinning)
4. Nicholas will shift attention from one object or activity to another with a)no more than 2 prompts by Oct 07 b) with 0-1 prompt by Feb 08. (6-Goal met)
5. Nicholas will play comfortably and appropriately in a small group with minimal prompts at 80% success for 2 consecutive data days. (6-Goal met. Up from a 4 last year)
6. Nicholas will follow classroom routine with no more than 2 adult prompts at 80% success for 2 consecutive data days. (4..same as last year; but more active this year)
7. Nicholas will indicate his wants and needs through gestures,signs,pictures,or verbal response on 3/4 opportunities with no more than 2 prompts (3...up from 2 last year)
8. Nicholas will express appropriate affection for peers and /or adults with no more than 2 prompts at 80% success for 2 consecutive data days. (4..smiles and laughs! Up from a 3 last year)
9. Nicholas will respond appropriately to social contact made by familiar adults with no more than 2 prompts at 100% success for 2 consecutive data days. (4..responding to name!)
10. Nicholas will appropriately express various positive and negative feelings with minimal prompts at an 80% success for 2 consecutive data days. (3...up from a 2 last year)
11. Nicholas will sit during circle time, small group time or other appropriate times for a minimum of 5 minutes or until the activity is completed; wait to be excused or ask appropriately to leave the activity with 80% success for 2 consecutive data days. (6-goal met)
12. Nicholas will choose a desired toy/activity using pictures,signs,or verbal request from a field of 4. (4+ on that)
13. Nicholas will imitate mouth movements/vocalizations/words by Feb 08. (4+)
14. Nicholas will identify an object/picture from a field of 3 by Feb 08. (4+)
Overall, he is doing far better than last year. On another note, our in-home therapist is not able to drive to our house-so we were back to square 1 by Monday. I asked someone in our autism group if they knew of anyone; and I got the names of three people. I will call them this weekend and set up a time for interview. This expense will be out of our own pocket-as our insurance does not cover private sessions. It will be roughly $25 an hour (4 hrs a week in home; or $400 a month). Mike and I discussed in length our finances to cover this. There is no way we can do without this therapy. Nick is making so much progress with the therapy and diet, I truly believe he will be high functioning-but he can't get there without help. We have cut down our cable to $50 a month, and doing some strict grocery shopping, and basically doing without anything we don't NEED. It's for Nick. We talked for more than an hour about all this. Mike has rarely spoken of "God", but he did this week. He said that God has a plan. We don't know what yet, but he does have a plan. It was kind of nice to hear those words come from him for a change. Usually it is me saying that.
As for Nick; that kid has an amazing memory. It might even be a photographic one. We can put a toy up, go out of the house for a few hours, and as soon as we get in he is making a bee-line for the toy. He remembers where it should be, and if it was moved while he was gone, he will look under every nook and cranny, and then take us to all the places he knows we hide things. I came home yesterday and found that he had placed his toys in an oval pattern on the floor of the "therapy" room. Blocks were in a line,things were stood up, and some things managed to get "clumped". (I.E. groups of 3 plastic fish)One of his teachers greeted him by patting him on the back the other day...Nick replied "No Hitting" to her. He has informed me on two occasions that he was "all done" eating. Our boy is starting to speak his mind...and what an interesting mind it is!
Sunday, November 11, 2007
Nick's World
I was able to get some video of him this morning doing some of the things that he does. The first video captures his "machine" voice. He will do this with just about anything, but mostly body parts (i.e. his arm), and geometric shaped objects like the picture frame he has.
In the second video you see him spinning one of his favorite toys. He also incorporated the picture frame in this sort of "play". It seems that he is looking at the reflection cast by the spinning toy in the picture frame. The round object on the table is a mint case that he has peeled off the stickers.
Some of his ramblings make words. As you can hear in the third video, he says what sounds like "Got milk". Another obsession he has started lately is the need to carry around a towel,blanket, or any other item of clothing. He also likes to stand things up.
In the second video you see him spinning one of his favorite toys. He also incorporated the picture frame in this sort of "play". It seems that he is looking at the reflection cast by the spinning toy in the picture frame. The round object on the table is a mint case that he has peeled off the stickers.
Some of his ramblings make words. As you can hear in the third video, he says what sounds like "Got milk". Another obsession he has started lately is the need to carry around a towel,blanket, or any other item of clothing. He also likes to stand things up.
Thursday, November 08, 2007
Good News!!
Nick has made very good progress with requesting things this week! His therapist at UW is amazed at all he is doing! He can now follow one-step commands like "clean-up", "sit-down", "get down" etc. All of this has taken LOTS of practice; but he is now getting it. We work with him every day on simple things like greeting people (saying HI, BYE, Good Night,etc), and making him request things like Cup, cracker,etc. Things are connecting. Today I picked up some BK because I had school tonight and did not feel like cooking. Nick stood beside me and acted like he wanted a french fry. I gave him one (I know, a big No-No while GF/CF-but he did not eat it anyway) and said "french fry". He took it, smelled it, rolled it on his face, got it to the lips, then was done. Well, he came up to me, looked at me, and said "french fry". I was so happy and shocked that I gave him another one and lots of praise! We have also practiced a bed time routine of saying "Good night" before going to bed. I told him one night "Nick, go say goodnight to daddy". He went down the hallway, found daddy in the living room on the couch and stood beside him. He needed a little prompting with speaking, but he did it! He now says "Good night, I love you" on his own.
We also found a therapist to work with him at home. She was recommended by our therapist at UW. She has worked with many autistic kids and she was looking for more hours, so she asked our therapist if she knew of anyone. Well, 'C' e-mailed me today at work asking if we were interested. OF COURSE! She will be coming Tuesdays and Thursdays from 11am-1pm. I still have not recieved the report from the speech clinic, so I am not sure of how much he will get there; but I am just glad that things seem to be falling into place. We have had a good week over here. Ending with a couple of pictures of Nick just being himself.
He loves to watch things spin in the microwave :)
Also a current obsession with him is to carry around a blanket,towel,or sheet wherever he goes. This is his favorite sheet in the pics.
We also found a therapist to work with him at home. She was recommended by our therapist at UW. She has worked with many autistic kids and she was looking for more hours, so she asked our therapist if she knew of anyone. Well, 'C' e-mailed me today at work asking if we were interested. OF COURSE! She will be coming Tuesdays and Thursdays from 11am-1pm. I still have not recieved the report from the speech clinic, so I am not sure of how much he will get there; but I am just glad that things seem to be falling into place. We have had a good week over here. Ending with a couple of pictures of Nick just being himself.
He loves to watch things spin in the microwave :)
Also a current obsession with him is to carry around a blanket,towel,or sheet wherever he goes. This is his favorite sheet in the pics.
Sunday, November 04, 2007
My Little Ducky
This Halloween was the best yet with Nick. He still does not get the idea of getting candy(much less EATING the candy) by going house to house dressed up in a silly costume, but he lets us do it every year. This year he walked the entire way instead of being strapped in his stroller, and I even took him up to a few houses so that he can participate. I tried to get him to say "Trick or treat", but all he could muster was a stare and a quiet "Tank U" (thank you) after some prompting. One house had a fog machine and lots of decorations outside. Nick stood at the edge of the sidewalk and exclaimed "WOW". He was a little hesitant to go through the fog, but he did it. It will be a while before he grasps the whole concept, but we are making baby steps.
Nick has been completely CF (no milk or dairy products) for a little over a week now, and he is adjusting very well to the rice milk. Thursday his school decided to give him regular milk despite me providing a thermos with his milk in his back pack every day. He had very bad diarrhea three times after that. I will have to write another note to his teacher directing them not to give him milk. We have noticed some good changes in Nick since starting the diet. Last night he did something he has NEVER done before. He went up to a kid with a flash light and said "My turn". He did this about 3-4 times and just kept following the poor boy. We were so happy that he actually initiated contact with another person; that it was all Mike and I could talk about after the boys left!
Friday we had an evaluation done on his speech through a local speech and hearing clinic. Nick was completing puzzles and playing with the toys and generally having fun. He would repeat words that the therapist said, and when putting puzzles together he would exclaim to himself "Good Job!". At one point he was so eager to respond with something; but just did not know exactly what to say; so he said "Goodnight, I love you" to the therapist!! He made great eye contact with her a few times while we were there and even touched her face. We should hear from them soon regarding how many hours he will get there. The clinic also works on food texture problems as well. I am so excited that we are finally going to recieve help for this!! We have been to a few doctors who said that he was beyond their services to help!! He WILL eat table food. Eventually.
Sunday, October 21, 2007
GF/CF
This is the diet that we are now trying with Nick. It is Gluten Free/Casein Free, and a lot of autie kids are on it. One reason might be that gluten and casein are responsible for improperly broken-down dietary peptides-part of the opiod theory of autism-or that the immune system dysregulation causes an abnormal immune response, whereby the body reacts to these and attacks itself. So, we are going to give this a try. In the past week or so, we have noticed a slight improvement with him. Nick is more verbal. One thing that we have Nick on is Cod Liver Oil (CLO). Some research shows that CLO has a positive effect in raising attention levels.
We are just trying these right now. If it goes well(which it has so far) then we will look into making it more permanent. We have seen some changes in him and that is what keeps us going. He is initiating more contact with us, using more words, and has had fewer tantrums.
I just want my little man to feel better. If this helps, then that is great. I am not searching for a "magical cure" for his autism. In a lot of ways, his autism is beautiful. The way he goes about singing, humming, and his gentle personality are all a part of who he is. He is simply Nick.
Sunday, October 14, 2007
Pictures from our walk for Autism
Our walk went great!! Thanks to everyone who donated...our team ended up raising over $600!!! It was a chilly fall day, but it was very pretty walking among all the changing leaves, and the huge campus of the University of Washington. We had a great time and raised money for a great cause!!
Here are some photos of Nick from the walk. Michael had a soccer game so he opted not to walk.
Nick loved the "Bubble Man"
These little toys were FREE! He had them on for the entire 3 miles!!
Our next car!! (Stop laughing!!)
Thanks to our good friends from Spokane for the wonderful team shirts! They came out great!! Thanks to everyone for donating!! We will be doing it again next year....and maybe some of you could fly up and join us?!
Here are some photos of Nick from the walk. Michael had a soccer game so he opted not to walk.
Nick loved the "Bubble Man"
These little toys were FREE! He had them on for the entire 3 miles!!
Our next car!! (Stop laughing!!)
Thanks to our good friends from Spokane for the wonderful team shirts! They came out great!! Thanks to everyone for donating!! We will be doing it again next year....and maybe some of you could fly up and join us?!
Friday, October 12, 2007
Another doctor visit
This one was an appointment made by me; no emergencies. I took Nick to the tummy doctor in hopes they could possibly shed a little light on his mushy stools. I had hoped that the chunkier food would firm them up a little bit, and it did for a while. But we are now back to mushy and I was just trying to figure out why. He had also had quite a few days with horrible behaviors-so I was wanting to get to the bottom of it. Well, I got Nick to the waiting room with no tantrums-so I was quite happy. He screamed bloody murder when it was time to weigh him, and was not liking all the noise in the little room we were in. After getting him weighed, I decided to tell the nurse that he was autistic and that's why he was acting the way he was. She smiled, and told me "I know. He has all the signs. We will just do what we can, ok?" After she got all his vitals(this took a while-he was barely cooperative), it was time to see the Doc.
I explained to him my concerns about wanting to make sure Nick was digesting all the nutrients in his food properly, make sure we were not missing anything in this puzzle. He asked me questions like "Is he allergic to anything", "What kinds of food does he eat?", "How many times a day does he poop?". I explained that he eats babyfood due to texture aversions, but we are moving towards chunkier foods. He felt Nick's tummy, and looked him over real good. He then went and consulted with his boss, and then they both came in. The other doctor looked at Nick and asked me questions as well. Between the both of them, they told me that since Nick has gained weight, and shows no visible signs of food allergies or digestion problems, they said he was perfectly healthy. I am not sure what to think about this. I am glad that they say he is healthy. In fact, I have been told that he is "Too healthy". I still wonder if he has digestion issues that cannot be seen? We are going to limit his dairy intake(no yogurt), and watch his gluten intake as well. Just maybe, it will help with some things.
Needless to say it is getting a little tiring taking him to these "-ists" only to be told he is perfectly fine. I took him to the nutritionist who said he was "too healthy for this clinic". I took him to the "feeding clinic" at this hospital as well, only to be told "Wow, he is a tough cookie. You might want to try another clinic", and "have you seen our nutritionist?". Now, the gastro doctor says the same thing. How can he not have issues when he goes from firm stools to mushy, then to loose all in one day?? He went weeks with normal stools, now we are back to square one?
I went shopping today and bought him NO Foods with wheat flour, or other forms of gluten in them. He got NO yogurt. I printed out a list from the internet of babyfoods that do not have gluten in them-and he is getting those only. We will see what happens.
Tomorrow is our walk for autism! I just wanted to say THANK YOU to those who donated! Our team raised $580 for autism research!! YAY!!
I explained to him my concerns about wanting to make sure Nick was digesting all the nutrients in his food properly, make sure we were not missing anything in this puzzle. He asked me questions like "Is he allergic to anything", "What kinds of food does he eat?", "How many times a day does he poop?". I explained that he eats babyfood due to texture aversions, but we are moving towards chunkier foods. He felt Nick's tummy, and looked him over real good. He then went and consulted with his boss, and then they both came in. The other doctor looked at Nick and asked me questions as well. Between the both of them, they told me that since Nick has gained weight, and shows no visible signs of food allergies or digestion problems, they said he was perfectly healthy. I am not sure what to think about this. I am glad that they say he is healthy. In fact, I have been told that he is "Too healthy". I still wonder if he has digestion issues that cannot be seen? We are going to limit his dairy intake(no yogurt), and watch his gluten intake as well. Just maybe, it will help with some things.
Needless to say it is getting a little tiring taking him to these "-ists" only to be told he is perfectly fine. I took him to the nutritionist who said he was "too healthy for this clinic". I took him to the "feeding clinic" at this hospital as well, only to be told "Wow, he is a tough cookie. You might want to try another clinic", and "have you seen our nutritionist?". Now, the gastro doctor says the same thing. How can he not have issues when he goes from firm stools to mushy, then to loose all in one day?? He went weeks with normal stools, now we are back to square one?
I went shopping today and bought him NO Foods with wheat flour, or other forms of gluten in them. He got NO yogurt. I printed out a list from the internet of babyfoods that do not have gluten in them-and he is getting those only. We will see what happens.
Tomorrow is our walk for autism! I just wanted to say THANK YOU to those who donated! Our team raised $580 for autism research!! YAY!!
Sunday, October 07, 2007
Peaks and valleys....
Just when I thought his head banging days were behind him, he starts it up again. I lay in bed yesterday morning, mind racing with all that needed to be done to get the four of us to Michael's soccer game at 11am. The silence of the early morning was suddenly interrupted by a loud screaming protest from Nick. "AAAAAAAHHHHH!" followed by a BANG! Nick had found the nearest wall to which to take out his frustrations. What a great way to start the day I thought. I got up and meandered down the hallway to the kitchen. It was going to be one of "Those" days already. I got both the boys something to eat, and then started preparing Nick verbally about what was going to happen that day. "Nick, we have to get dressed and go to Michael's soccer game" I told him as he yelled at me on the way to his bedroom. He did not want to get dressed this early in the morning. We managed to get everyone ready and out the door by 10:30.
Nick is fine until half time when suddenly 13 kids come off the field and gather around us for snacks....he gets visibly uncomfortable at all the commotion and starts crying. No other thing to do than just to deal with the crying while everyone looks at me as if to say "Aren't you going to soothe your child? Why is he crying?"
Somedays I just go around wondering "What is going on with this kid today?" After weeks of reprieve from head banging, he is now doing it again. He was stimming for most of the day, and when I tried to get him engaged with me, he persisted with throwing things to the floor, and just not paying attention at all. All he wanted to do was flick switches, open/close doors, and wander around with a blanket on his head. My whole day was pretty much spent keeping my frustration under control. I just kept thinking "Just.......QUIT.....with.....the....stims...I can't take it anymore!" I spent most of our session together just trying to reach him. What the heck happened??!! I am usually able to get eye contact from him when he is focused, but yesterday he was all over the place. I had to grab him and MAKE him look at me-once he did that, he would speak, or do something else I wanted.
Last night after he ate his dinner, I decided once again to give him the CLO. I stopped for a while because I was not sure if it was having any effect on him. Today, he was completely different.
He started the day off with coming to get me to play with him while I was in the kitchen. After playing for a few minutes, I went back to doing dishes. He came up to me, stood beside me, and said "Gimme Hug" in his quiet, Nicholas voice. Today, he managed to say several phrases appropriately...
"All Done" while I was playing with him
"Stop it" to Michael in the car
"No bed" when I put him in a "time out" of sorts after banging his head.
Somedays I feel like maybe we are not doing enough for him. Others I feel like we are doing just fine. We have switched him to powdered milk, started back with our CLO and vitamin supplements, work with him everyday on the most simple of tasks, send him to pre-school, and try to get him de-sensitized to table foods. I found some old pictures of Nick last night when he was a baby, and actually EATING...more solid foods than he does now...
Nick-11 mos old; eating a biscuit
Look at that! My baby eating crackers and cheerios!
Nick is fine until half time when suddenly 13 kids come off the field and gather around us for snacks....he gets visibly uncomfortable at all the commotion and starts crying. No other thing to do than just to deal with the crying while everyone looks at me as if to say "Aren't you going to soothe your child? Why is he crying?"
Somedays I just go around wondering "What is going on with this kid today?" After weeks of reprieve from head banging, he is now doing it again. He was stimming for most of the day, and when I tried to get him engaged with me, he persisted with throwing things to the floor, and just not paying attention at all. All he wanted to do was flick switches, open/close doors, and wander around with a blanket on his head. My whole day was pretty much spent keeping my frustration under control. I just kept thinking "Just.......QUIT.....with.....the....stims...I can't take it anymore!" I spent most of our session together just trying to reach him. What the heck happened??!! I am usually able to get eye contact from him when he is focused, but yesterday he was all over the place. I had to grab him and MAKE him look at me-once he did that, he would speak, or do something else I wanted.
Last night after he ate his dinner, I decided once again to give him the CLO. I stopped for a while because I was not sure if it was having any effect on him. Today, he was completely different.
He started the day off with coming to get me to play with him while I was in the kitchen. After playing for a few minutes, I went back to doing dishes. He came up to me, stood beside me, and said "Gimme Hug" in his quiet, Nicholas voice. Today, he managed to say several phrases appropriately...
"All Done" while I was playing with him
"Stop it" to Michael in the car
"No bed" when I put him in a "time out" of sorts after banging his head.
Somedays I feel like maybe we are not doing enough for him. Others I feel like we are doing just fine. We have switched him to powdered milk, started back with our CLO and vitamin supplements, work with him everyday on the most simple of tasks, send him to pre-school, and try to get him de-sensitized to table foods. I found some old pictures of Nick last night when he was a baby, and actually EATING...more solid foods than he does now...
Nick-11 mos old; eating a biscuit
Look at that! My baby eating crackers and cheerios!
Saturday, September 29, 2007
SSI Update...and trying something new!
Yesterday I had the day off from work, and I took advantage of it. I woke up early and got the boys ready for school. For Michael, this was a nice change and he loved that mommy would be driving him to school. For Nick, this was an unwanted change in schedule. He did not like the light turned on in their bedroom, and protested by covering his eyes and crying. This was a major upheavel as far as he was concerned! I was shocked that he managed to eat some breakfast, because he refused his cup. We got everyone shoes, jackets, back-packs, and we were ready to go out the door. We left the house with Nick carrying a comforter(he screamed when I took it--so what the hell??)Of course, I must add that before all of this I had to catch him as he ran at top speed out the door and straight for the road.
By 8 am both boys were in their respective schools and ready to start the day. I came back home, did a little housecleaning, and then had to get everything ready for my appointment with the Social Security people to see if we qualify for SSI. I had to bring bank account statements from July to Sept., Mike's Life Insurance POlicy, and Pay stubs from both of us from July to now. For once in my life, I actually HAD everything! I never imagined myself waiting in line for government help; much less have a CHILD who would have a qualifying condition. But; life did not ask me for what I wanted. I was given some paperwork to have Mike sign and mail back to them-so hopefully Nick can start getting some extra help. It may not be much, but it will be something.
This evening I thought I would try some different food with Nick. I washed out one of the baby food jars and put some of the Gerber Toddler Meals in it. It was a beef and stars dinner with green beans. I mixed in a couple of green beans with the noodles, just to see if he could eat it. Success! We had a few instances where he gagged, but instead of giving up, he kept on eating it. I was so proud of him! How hard must it be to eat even the simplest things when you are sensitive to food textures??! I applaud him for giving it his all-he works so hard every day. He amazes me. He has been off of whole milk for almost a month-and has been drinking the powdered stuff without looking back! He has made some huge gains in the last month. Hard to tell if it is school, or milk related, but we are singing joyous praises over here! Nick answered his first question at school, and even told his teacher "Thank you" with no prompts! BIG CHANGES!
Tuesday, September 25, 2007
Two sides of Nicholas
Apparently Nick had a bad day at school today. Even the bus driver had heard of Nick's horrible day and attempted to appease him with her flashlight. That worked wonders, of course until it was time for him to get off the bus and give it back. The ensued screaming could be heard from inside the house-ahhhh, Nick was home. The school has started writing daily notes about his day and sending it home with him. Todays note was very interesting to say the least. Made for a humorous read. Here is what it says: Today in centers I: Helped with blocksgoing good so far We read a story called: Guess how much I love you ok For Group activity we: Had Speech NOTES: Here's the kicker Very Emotional day-haven't seen him get so upset before!One of two things can be envisioned here. Usually involves an object being hurled Did not want to give up activitiesYou don't say? It was cute and a learning experience!Yes, I am SURE it was! Nick has shown us another side as well. He is making some pretty big leaps in development--rather quickly! He has started to put words together to request things!! This week alone he has: Pulled Mike by the hand to the fridge, made him open it, and Nick put his hand on the applesauce and said "applesauce". He has also done this with MIlk,yogurt, and fish crackers. Today he pulled Mike by the hand and said "Up please,light on" That's FOUR words....together!!! I also got this on video a couple of nights ago:
Friday, September 21, 2007
SSI
We got a letter in the mail today regarding SSI for Nick. We have to be at the Social Security office on the 28th to meet with a representative. We have to get pay stubs from July 07 until now, along with a few other items. I am hoping we get it-we could use the extra money for some of his things. We also recieved a statement from UW about the cost of his therapy for the past 30 days....over $1,000 worth. How do people even afford this stuff? It is completely ludicrous. These therapies SHOULD be available to anyone. I think it is a tragedy that everything is different depending on WHERE you live. South Carolina is planning to pass a bill that gives FREE ABA therapy until children reach a certain age(5 I think). There WERE two centers near us that provided everything he needed AND took our insurance...what happened? They closed down. It is a frightening realization that many families are depleting their savings and going bankrupt just to get their child the therapies they need. What is our alternative?? To let our kids slowly disappear into a world that they themselves only occupy?? Why should we have to fight school systems tooth and nail to give these kids what they need?? Is it because many people still think autism=retarded..and therefor only worth teaching the basics? Or because we give such little consideration to people who cannot talk? How many times have you come across someone who perhaps had trouble speaking and automatically assumed that he/she was retarded or stupid? I can tell you that I will never,ever think that again. Always assume intelligence. Nick has introduced a lot of people to the true wonders and gifts that those with autism have. Somedays I think we learn more from him than he does from us.
Tuesday, September 11, 2007
S.W.I.M.
I got an e-mail today from one of the people who is involved with the Exceptional Family Member Program(EFMP)saying that there was an aquatic class/therapy for kids with special needs. I called the number that was attached and they take autistic kids! It is offered through the YMCA in Tacoma, and costs only $29 per month! The class is on Saturdays; so I would have to wait until soccer season is over. It would be from 9-12pm and it would also serve as a form of physical therapy. YES!! I will be signing Nick up for that starting in Oct.
He is doing good so far in pre-school. They send home notes everyday explaining what they worked on. I am hoping he gets more out of going this year than he did last year.
I am also in the process of switching Nick from whole milk, to the powdered stuff. He went through milk like crazy, and so far with the new stuff he does not drink half as much as he did.
He is doing good so far in pre-school. They send home notes everyday explaining what they worked on. I am hoping he gets more out of going this year than he did last year.
I am also in the process of switching Nick from whole milk, to the powdered stuff. He went through milk like crazy, and so far with the new stuff he does not drink half as much as he did.
Sunday, September 09, 2007
Organization is key...
At least to Nick anyway. This is how we found his "classroom" this morning after he had been in there for a little while. Notice the geometric shapes made with the balls and the baskets..
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