Our Cool Kid

It has been four months since we began homeschooling James.  Four months. And?  Sure, it's way challenging but I have definitely drank the Kool-aid, if it exists, because homeschooling James is either the most ultimate, amazing, life-changing experience or i am so out of my mind that I should be committed.

I wasn't positive we were doing what was best for James.  We just knew we could not continue submitting him to what amounted to daily torture.  Was James really as poorly off as the school claimed?  Was it true I was a desperate mother not wanting to see what James really was?  Should I consider putting him on drugs to ease his school anxiety because when he gets older he will have to live in institutions with violent people?  These weren't really what I was thinking (except in the middle of the night) but these were all things that were told to be by "professionals" in the autism world.

Hah! Listen all you parents and caregivers: TRUST YOUR GUT! You DO know your child best.  You must speak up, especially if that kid can't speak for his or herself.

Yes, James can read.  Yes, James can type.  James can answer my questions in sentences using correct verb tense and pronouns.  James loves facts.  He can tell you anything about New York State.  He offers his opinions.  For instance, James really likes stories about Franklin Delano and Teddy Roosevelt when they were his age.  Who knew?  Lo and behold, James can even tell you what he is feeling.  While we were working on penmanship, James told me why he was crying: "Frustrated." And what was wrong; "I cant write." All this because I, his teacher, and all his therapists - Occupational, Physical, and Speech - require that he use his iPad.  The program ProLoQuo2Go is amazing.  I entered his daily schedule.  It allows for major flexibility and is easy to change.  We use it for every activity from school and therapy related ones to weekend fun and chores.  If the choice he wants is not available, he can type and tell you want he requires.  And it all talks for him.  He writes a sentence, hits enter and he "speaks."

I can't say that James has changed.  He has the same quirks and anxieties, although the degree to which he experiences these has lessened dramatically.  He does engage with people more willingly.  And he participates in every aspect of my life.  Muni-meter feeding?  James does it for me. Laundry:  Well, he is good at throwing things in at least!  Preparing dinner?  Not too much yet but he watches me like I am a TV.  I even get him to try new things this way.  My kid hates cantaloupe but loves ginger, go figure! Grocery shopping?  Oh, he comes, and they all know his name.  Occasionally, James picks out items that are not on our list.  So far, I have been mostly lucky, (as seltzer water and watermelon are affordable), but also because, when he has suggested something that I don't want to buy, he has calmly handled my explanation.  THAT boy is different.

James absolutely knows the numbers 0 through 10.  I am trying to keep myself from rushing ahead in his Math-U-See lessons as I am dying to see if he knows addition as well.  He knows the concepts of up/down, bigger/smaller, left/right, before/after, open/closed.  So far, he knows 10 colors, 5 shapes, 21 body parts, and 39 animals.  I have been using killer apps from Dr. Gary Brown.  All using Discrete Trial Training although James' incentive for successfully completing each trial is another Application: Dr. Seuss Band!

It's not that James has changed.  As I said before, my sweetie is still autistic and non-verbal with all the quirks and anxieties and major baggage that come with those afflictions.  BUT, the difference is that now, James is HAPPY.  And, so am I.

Poker Face

James' iPad had been a life changer for us.  If he didn't have it, my kid who can't speak, couldn't tell me that "I feel" "scared" at school. Previously, I would have trusted that James' educational needs were being met.  If it wasn't for the school's computer illiteracy, I wouldn't have to find out the lesson plan so I could load it into his communication application.  I wouldn't know that he was sitting silent when other children were greeting each other by name in circle time.  I wouldn't know he wasn't participating during story time when the children were asked questions. Before this I was only freaked out about how his fear of the violent children was confirmed by being severely bitten.  "They hurt me," he typed.  On my demand, he was transferred to a new class, but nothing was done for James as a person who was attacked in a place that he thought was safe.  So, what does this lack of action mean? Not speaking means zero intelligence?  Is it any wonder that, now, in James' mind, ANY child making noise is feared?  Even if the child is quiet, James looks at them as a time-tomb.

My last meeting with the school administration was the final straw.  We have had many fruitless meetings, about creating a behavioral intervention plan, about giving James' day more structure, about incorporating the iPad in James' day, but the kicker was Tuesday morning.  At first I had to re-explain how I wanted more structure in James' day and how I planned to help by updating his iPad with each week's lesson plan.  While these were not new concerns nor the first time I expressed them, it was apparently new to this person.  Sigh.

No, I don't think my parents knew everything that was happening at my school, but my parents had a kid who could talk.  I have no problem writing a monthly newsletter for parents to keep them current.  Please don't write an email about that now.  No, I don't need a "title," I don't work here. Can we get back to James?  Since you feel James can't have a 1:1 because he is not ill or violent or self-injurious yet, can we somehow help him handle his anxiety of loud children?  Perhaps remove him from the classroom (a weekend), and slowly introduce him back?  First maybe circle time and trials, then we go home.  Not to fun but to a structured day.  We'll have the lesson plan to help keep current and provide drawings and sentences to the teacher to show how we spent our time. Meanwhile, we keep making the day at school longer.  Stay longer each time or perhaps come back at lunch and stay? Until, finally, James is back at school.  What does my doctor think of medication?  Honestly?  My doctor told me to pull James out of this school immediately.  That you have dropped the ball continually since James' teacher left last year.  I agree with him that putting a new teacher, three violent children, and all new aides into a classroom was not wise, and unfortunately affected James' adversely.  No, I do not think James' crying and screaming is about avoidance of work - but about avoidance of the entire classroom.

What I did NOT say is that the Doctor - after I mistakenly said I wanted to work with James' school as they were so helpful in the past - admitted that maybe they weren't the worst.  He told me about a boy whose school that encouraged medication because he acting up even though he hadn't been seen by a doctor let alone had a diagnosis. Keep them docile rather than address a problem. Oh my.

Regardless, the final answer from the school was NO to my plan to ease James' anxiety.  Later it was reported to James' teacher that it was a great meeting.  Wow.  The next day, I met with the Board of Education.  We talked options, different schools and where James would fit in all this.  After eight long months of stress, worry and continual useless meetings - while we watch our son regress - we decided to homeschool James.  I can program James' iPad for my own lesson plan, I can ensure his participation, I can merge life and school in a way that will benefit his future life, encourage James to become part of his community instead of driving all day, and move his therapy schedule to the day to add sports and other afternoon social activities.  It will be hard but it is the right thing to do, for James, and for me and his Dad. 

I Like This

Actually, I don't.  I hate it.  So much.  James is crying every day at school.  The only thing he can tell me is "they hurt me."  He is frightened of any child who makes noise.  Even if they are quiet, he anticipates the noise that he knows they CAN make. It's pretty bad.  We had a meeting about creating a behavioral plan.  I requested a one-on-one.  I requested his sensory diet be followed to a tee.  I requested they use his iPad.  In this case, a successful behavioral plan cannot be implemented without a one-on-one.  The teacher has complained that her staff is stretched thin.  How else could James be monitored, let alone brushed?  How can the plan be put it in place and function if no one oversees it?  That was 10 days ago.  Zip.  Not even a copy of the minutes from that meeting.  I complained to the "principal."  Actually, that's not her title.  I have no idea what her title is and I don't really care. . .  because that was Tuesday and today is Friday and I have heard NOTHING.  Not even "we're working on it."  So today, I wrote letters.  Enough of making myself sick and being unable to sleep.  Well, at least for one glorious weekend.  Because at home, although we do have new issues - I now have a kid who is terrified of his adorable cousin;  I have a kid who won't let me leave his sight and follows me around the house; I have a kid who cries when I take away my attention to use the phone - because at home, this is what I see.  And this?  I do like this.

Hold On Tight

James is having an extremely rough time at school.  He has been having problems since the summer regarding noise and extreme fear of violence, but things eased after his class was switched. Unfortunately, these issues were never seriously addressed, did not completely disappear,  and, very recently, majorly escalated.  Before break, he cried, yelled, and screamed for three days straight.  After vacation, he started up where he let off.  At home? At home we are doing well. Sigh.  I mean it is GREAT but how can I curb behaviors when I don't experience them?  Be careful for what you wish for!

With all this in mind, I dreaded my nephew's third birthday party.  First strike was the hour.  Four PM, is not good for James.  He is creature of routine.  By that time, we are headed home ending our day, not starting a new activity.  Holiday, vacation, busy weekdays are all very similarly structured. Home, snack, relaxing, and then homework, bath and dinner. After that it is movie time with Mom and Dad.  With what was happening at school, I tried to talk with my husband about James skipping the party.  It didn't work and James spent an hour cowering on my lap watching YouTube in the basement playroom, where we stayed for the evening.  Not good but not the time or place for teaching a lesson.

Although my fears were realized, I at least planned ahead and took Monday off so James (and his parents) could recover before going back to an already difficult school routine.  Also, a school meeting has been scheduled to address James' behavior. We have briefly talked about developing a behavioral plan and amending James' IEP (Individualized Education Plan).  I have to make sure this plan is created with James' sensory issues in mind.  This over-sensitivity to sound must be tackled.  It went from fear of noise and fear of violence to noise=violence.  I have patiently waited for whatever their plans - to settle him in the new class were - to work.  They are not.  Besides, when I was told that James would have a transitional person help him ease into his new environment, I mistakenly assumed that it would continue until the transition was deemed to be complete, not three days, regardless.  Honestly, I feel nothing was seriously done to help James because they wanted him to fail.  Okay, maybe "fail" is harsh, but it is a matter of semantics. I believe the school wants James to give up a seat in this higher-functioning class, and be placed back in the class for kids with violent behavioral issues.  They can't fill that class, parents have actually pulled their children out of the school when a change could not be accommodated.  As we will if this is suggested.  Although James in non-verbal, he has typed "they hurt me" and chosen "I feel" "scared" on his iPad.  How can we send him back to such an environment?

This time, concrete plans must be detailed, including implementation, measurement and evaluation.  And I want my ideas about using a weighted vest, about brushing and joint compression, and about noise-canceling headphones, to be incorporated meticulously.  These common ingredients of a "Sensory Diet" have been introduced in the classroom, but incorrectly, and have exasperated James' issues.  Because of this, we will demand a one-on-one para-professional. Concurrently. we are planning a full medical work-up on our boy as well.  Checking his hearing, looking for any allergies (besides the hot button gluten/casein issues), even his brain activity.  I can't continue to ignore the physical, just because he seems healthy as a horse.  Besides, if the doctor feels a one-on-one is needed, a medical justification would be a far easier way to ensure it!

Yikes. Talk about new resolutions!