Life as we know it ...

I have not felt like blogging lately. My thoughts have been scattered and my mood has been low. I just had that “as good as it gets” pity party going on.

Things have not been in crisis mode, which I should be thankful for. My daughter continues to be stable and my daughter continues to be a pain to live with. Some how crisis mode allows me to feel more positive than everyday pain in the butt mode does. And then I feel ungrateful.

The month of February was filled with I don’t want to take a bath and I hate homework rages. We handled the rages, everyone stayed safe. Then the behavior therapist suggested a bath pass earning program. I turned away as my eyes rolled up in my head because seriously I was not feeling the bath pass thing. We have be done so many things to accommodate a child who struggles with behavior problems at home but not at school that I literally felt done accommodating. I wanted to dig my heals in and say no more! When you are dirty you get a bath period because you are seven and that is the Mommy’s call to make. I tried to put on a good face but I was resentful that yet again we have to figure out some way to get this child to do what everyone else here is doing with out accommodations, including a child with Asperger’s and a four year old.

But … I sucked it up and went with the suggestion and it is working. Everyday that Miss has no bath tantrum or homework tantrum she earns a check on the board. Three checks in a row and she earns a bath pass card which she can use when she chooses. She cannot use the pass if she has poop in her pants. If she has earned one or two checks and has a tantrum then we start all over again, it must be 3 checks in a row. When she uses the pass we right pass on the board but it does not count as a check. In three weeks she has only had one tantrum regarding homework or bath. I should be thrilled and I do act thrilled to her but inside I am resentful. I am resentful that it takes this kind of effort to get such simple things accomplished. I should not be I know and I’m working on it.

Right now we are working through “due process” with the school to try to get our son’s IEP labeled correctly. Right now it is a language based IEP. His “language exceptionality” is based in his Autism Spectrum Disorder (ASD) diagnosis of Asperger’s. We have brought this up for years and been brushed off. So we are now working with an educational advocate and hope to make progress, time will tell.

Mr. had a surgical procedure, nothing major, but his recovery took longer than expected. He missed a good bit of school because of it and he discovered upon his return to school he could say that his surgery site bothered him and that he would go to the clinic and Mom would come pick him up. So we had to address that issue.

His anxiety at school has been increasing and he wants to be at home with Mom. I am flattered and happy that he is most comfortable at home but he still has to go to school.


It’s Soccer time and Lil Bro and Miss Fabulous are both playing soccer now. The Hubs was recruited to coach Lil Bro’s team. There are 6 four and five year olds on the team, two of which are prone to crying when they don’t score a goal. They are cute as can be and the Hubs is doing a great job with them.

Miss started out strong and confident at her first practice. Second practice the coach tried to give her instruction as to how to kick the ball correctly and that was not a big hit with her. She went into passive aggressive mode where she missed every ball that came her way and only gave the appearance of participating but really was just kind of bopping around in the general area. I asked her what she thought of coach and she said that she could not understand him when he spoke. I told her to just do what he was showing her to do and she didn’t need to worry about understanding his words. As we know she is a very visual person and the coach was giving very good instruction visually, despite his accent.

So we hope that she will continue to be willing to show up to practice with out a bunch of boo-who. The evaluator who worked with her last spring recommended soccer to help Miss be a part of a team where the attention is not focused on any one person and you win by supporting the team.

Temple on Asperger's

So true!

It's enough to make you pull your hair out!

Side one.

Side two.

Anxiety is in full swing and Mr. Man had a meltdown that included pulling two big handfuls of hair out.  He has not done that in a long time.  Second grade is proving to be a challenge for him.  His teacher call me recently and let me know that she had already met with the speech teacher and the coordinator for the IEP to have some changes made to meet his current needs.  Awesome! 

Although he can handle the actual problem solving for the math problems understanding the word problems and what they are asking him is a challenge and since he does not like to be wrong or to get anything wrong that is not going over so well with him.  Although he does not act out at school his teacher is aware of how much he is struggling on a personal level and cares about the child.  Love her!

Miss Fabulous is giving Mom and Dad a hard time about homework to put it mildly.  She is displaying typical RAD behavior regarding homework.  She wants an audience.  She gets answers wrong on purpose and then a major drama occurs when she is asked to correct it.  She will carry on for an hour and longer and then finally says oh fine and does the work that she was capable to do all along.

Dad and I made a decision that she will now do her homework at her desk in her room and not at the kitchen table.  She was shocked to hear it but homework moved along at a better pace tonight so who knows.  She cooperated and did her reading assignment nicely.  When asked what it was about she recalled actual facts and had clearly retained the information that she had read.  We were thrilled and told her that because she had done so nicely she earned play time before we took her spelling pre-test.

She felt the need to sabotage herself a bit after having earned a reward and so the spelling test did not go as well as we could have hoped.  However, after she got the nonsense out of her system she spelled the words all perfectly well.  It was amazing to see.  The skills of manipulation are impressive to say the least.

It does seem that yet another teacher has been sucked in to Miss Fabulous trap but I can't hold it against her.  After all she is up against a skilled master of manipulation.  We keep working at it.  We have put in for a conference with Mrs. Teacher.

Miss Fabulous report card was impressive, she in fact surpassed her "gifted" brother by miles.  How's that for scary smart?!

Our first born has lost her Internet privilege for the time being.  When your child goes to virtual school on line that can be tricky to enforce let me tell you.  However, Dad and I have made it clear that earning the right to use the Internet outside of school activity in part will be based on adhering to the restriction that is in place.  She made some unsafe sneaky choices and for her own safety needs to understand why that is not okay.  She is a good kid and really even an easy kid to parent but even the easy ones need tweaking now and then.

Miss Fabulous had her first ever dental appointment today at age 7.  I know bad Mom award but I plead RADical Bipolar as the reason she has not been before now.  I am happy to report that she has excellent teeth and needs no fillings.  Mr. Man also had his dental appointment today.  Their dentist is awesome!  She asked if he was a "juice monkey".  I told her that he had been as a toddler that it was a huge coping tool and it helped his anxiety level to suck on a sippy cup with juice but that he doesn't do that anymore.  He has several "juice cavities" but Dr. Dentist said that once we get those filled he is otherwise in good shape and no worries.

On one hand it makes me feel like a loser Mom who let her kid get cavities.  On the other hand I plead Asperger's Disorder and Anxiety.  I knew the risk but I decided that they were baby teeth, we could get them fixed and if the darn juice helped him calm down so be it.  In the end I can live with it.

Grateful Nation Spotlight Autism

John Elder Robison

I love John Elder Robison and listening to him share this is so hopeful, I think, for families trying to put the puzzle of autism together.  Hope this is helpful.

Article

autistic-boy-booted-from-flight-mom-claims

Not happy news by any means. 

I was on a flight in 2003 from Atlanta to New York and the flight was on the runway for several hours.  It was during the black outs in NY and that was the reason for the delay.  It was August and an airplane sitting for several hours with the AC trying to keep up produced a lot of condensation.  It was dripping on some people and one young woman in her 20's was using an airline blanket that she had to keep the condensation off of her.  A flight attendant told her that she needed the blanket, it was for someone in first class.  The spunky young woman did not want to give up her blanket easily and understandably so. 

The girl never cursed at the flight attendant but the attendant yelled at her and claimed that she had cursed at her and that she would be having her arrested when we landed in NY.  At that point the head flight attendant joined the commotion and excused the riled up flight attendant and some what apologized to the young woman.

After 9-11 flight attendants needed to be given more authority to deal with what might come their way.  Clearly the power had gone to this attendants head.

BTW I was on this flight on my way to meet Mr. Man in Russia!  He was a tiny little cutie pie!

Super Nanny and Autism

I just watched the Super Nanny episode which shows a family learning to help their 3 year old son with who has autism.  Nanny Jo Frost brings in world-renowned autism expert Dr. Lynn Koegel to teach the family how to help little Tristin. 

This episode took me back to when Mr. was 3.  Mr. was so similar to this little guy but more aggressive and instead of not speaking at all he had delayed echolalia, meaning that he learned language in phrases and tried to figure out where those phrases fit into life around him.  One day when I walked in the front door he was excited to see me and said, "Coming up soon" a common TV phrase.  It was pretty close to appropriately fitting the situation.  I would give him the appropriate phrase instead, "Mommy you're here!" and he began to catch on.  Mr. was first identified with hyperlexia at age 2 and 3/4 years.

We have his IEP meeting on the 8th and he has come so far since age 3 that at age 7 I think they are going to want to discontinue his IEP. I have mixed feelings about that. On one hand it is awesome the progress that he has made and the interventions he has responded to. Some parents with children with autism find a situation where the child just doesn't respond to what they are being exposed to, very discouraging and frustrating to say the least and expensive also.

The mixed feelings come in that as long as he has the IEP in place he has special "attention" in place with a number of professionals watching his progress and monitoring him through out the school year. If the IEP is let go then the conclusion is "he is all better" and they are moving on. Mr. still has a lot that he is learning to deal with. He does well in school because he is very comfortable with the environment and the routine. But also he has not entered into the more difficult subjects yet. The work in first grade is below his IQ and ability but maturity wise he could not handle a more challenging environment. He has had some minor problems in math this year particularly following the winter break because numbers don't interest him, words do. He has to slow his brain down and think about the problem at hand and he isn't interested in doing that. At the moment it isn't causing any real problems, his teacher puts notes to review the work with him, and he is still getting a satisfactory grade. But … what about next year in 2nd grade with more challenging work, more challenging social skills, and with out an IEP he isn't looked at as a kid who needs some extra help. This is where I start feeling panicky.

As his mood has stabilized considerably with "magic med" he is becoming increasingly interested in art projects, which involved his favorite Mario Bros characters. In fact he has skipped earned Wii time to do a "project" instead, unbelievable. I am really happy to see it because the less Wii time and electronic time the better in my mind. He has also been showing some interest in playing littlest pet shops with the sisters, but it doesn't hold his attention very long which frustrates the sisters and that's a whole 'nother post.

We hit the JACKPOT at the GW the other day and in fact Mr. is the one that found this find. My camera is not working so no pics but we found a container the size of a back pack FULL of littlest pet shops and their stuff for $3.99! The price of one little littlest pet shop toy, I LOVE buying second hand. And thank you to the rich people who are too lazy to put your kids toys on EBAY! You have saved me A LOT of money so way to go! High Five! Booya!

Anyway there is progress on the Mr. front.  He perceived a slight change in the schedule this evening regarding dessert.  There really was not time change but he got confused as Monday night is our family bible study together, dessert follows the study but the activity is something that we do once a week not every night and so that small change is unsettling to him.  He did not become explosive.  He was convinced that he was hungry so he was offered a small cup of yogurt and reminded that dessert would be after the study.  He wanted chocolate chips in the yogurt because he was determined to make it into a dessert and feel better about life.  I felt the yogurt was compromise enough because the other kids were nicely waiting for their dessert for after the study and they were praised for this and promised a special dessert.  He would be having the same dessert too but he needed to wait like everyone else. 

He left the study and went to his room and cried.  I have to tell you my heart melts and I want to run in and save him from his upset but I didn't.  He came out of the room a few minutes later and joined the study and waited nicely like everyone else.  Progress!

Honestly by nature I am a lot more "don't sweat the small stuff" but what I have been taught and learned the hard way too is that Mr. cannot deal with that mentality.  A major reason he functions well at school is because of the rigid routine and structure.  Sigh, so I have had to learn to go against my free flowing hippy nature and stick with the structure.  If dessert comes after the study this week it has to come after the study every week from now until the end of time or the universe does not make since to Mr. and he starts to unravel.

And that's news to me!