Advocating for a Child with Behaviors

Warning - this is a long one.  I go into details so that you can learn from my mistakes.  My husband and I have fostered and adopted kids for the last 12 years.  Our final foster child became our son officially almost five years ago but he melted our hearts just prior to his two month birthday when we brought him home from the hospital after several surgeries, more shocks to his heart than any child should have to endure, and with the love of a ton of nurses who really nursed him into health.

This little guy was born to his biological mother at her home.  She proceeded to drop him on his head, cut his umbilical cord and not clamp it off, stab him 40 times in the trunk with a pair of scissors, and then wrap him in a wet towel and leave him under an open window shortly after Christmas.  For some reason, before he was completely dead she called 9-1-1 and they came and took him to the hospital where doctors administered extraordinary medical interventions and saved his life.  He has scars all over his still small body.  His lungs both collapsed, his pericardium was cut, but luckily not his heart, there was liver damage that was life threatening, he lost so much blood that there was lack of oxygen to his brain which in turn caused seizures.  I really don't remember all that my little love went through in those first moments of life, but it was hell.  He wasn't expected to live, and once it seemed he would live he wasn't expected to do much.  The doctors didn't expect him to sit up, stand, walk, eat, speak, or be able to care for even the most basic of his own needs - ever.

Our little guy doesn't do what anyone expect him to do though!  He has above average intelligence according to the testing we have had done, he not only walks, he runs and climbs and rides his bike without training wheels.  He can swing at a ball and hit it and he can do some amazing jumps on a trampoline.  He is on track for all of his academic milestones.

There is one area that is difficult for him though.  Speech and language.  He actually speaks pretty well, his articulation is very good most of the time and he can put together a sentence that seems quite appropriate for a child in kindergarten.  He has trouble taking in what he hears though.  He likely has a condition called Auditory Processing Disorder or Central A.P.D.  In our state it can't be technically diagnosed until a child is 7, so we are left knowing he has this trouble, but not being able to get a diagnosis and get him some of the help he needs because he hasn't turned seven yet.  Kind of a ridiculous rule, law, whatever it is, but hey it's what we have to deal with.  Pretty much what happens is he doesn't hear things exactly like they were said - I might say tangerine and he might her magazine.  He also has trouble with some concepts.  Mostly these are positional concepts like over, under, between, behind, first, last.  He also has trouble answering "wh" questions, and the toughest of them naturally is "where".  These difficulties are amplified in the classroom - lots of other noise, constant change/transitions, and a bunch of kids who don't understand that he has this difficulty.

Kindergarten classes in our district have 30 kids this year.  Last year it was 20 kindergartners, this year it is 30.  We worked hard to get him into the local charter school, thinking their multiple intelligences style of teaching would benefit our little guy.  The charter school doesn't have all of the overhead of the large district, but since the district was putting 30 kindergartners in each class, they had no need to place fewer children in the kindergarten classes.  Additionally, this made more parents happy since they could put more of their children into the charters classes.  Many of us enrolled our kids in their hybrid Independent Study program which includes going to class on campus three days per week and home-schooling two days per week.  My little guy was 6th on the waiting list so we could feel very secure in the knowledge that he would be in a five day a week class in first grade and then he could spend the rest of his academic days at charter school until he completed eighth grade.  And by then it was expected that the charter might even have a High School.

Because charter schools are actually public schools they must take children with IEP's.  This particular school doesn't take students with more severe special needs, kids who need a special day class, but they do take kids who can learn in the typical environment.  this seemed like a perfect opportunity for my son.  He had been in a special ed preschool class where he had a few behavior issues, but not more than you would expect from any preschooler, three incidents in two years of preschool.  His speech had come along - when he first entered the program he spoke only 10 words, and what little he did say was difficult to understand.  After two years in preschool with speech therapy (albeit not the best speech therapy - it was the district/county program after all) and over a year of private pay speech therapy he was able to speak clearly most of the time (anxiety has effected his speech and it gets unclear at times) and he spoke in full sentences.    He seemed pretty much like any other kiddo but we knew he did need some extra help, therapy and some modifications and accommodations to benefit from his education.

We went to meetings, we got him his uniforms, we got him to school with his homework done, but after about four or five weeks we started hearing that he was behaving inappropriately in class.  He was pinching some of the other children and even spitting at them.  This was shocking, he hadn't done it before.  We were told that this wasn't all that unusual given the severity of his speech and language deficits.

We worked in an IEP meeting to prepare a behavior support plan with school staff.  He would be given positive reinforcements every half hour until he could do well with that, then the supports would move to an hour, then two times per day, then once a day, until his behaviors were acceptable.  The teacher would give him small rewards, like passing out the pencils, high fives, and being the first to do an activity.  I gave her stickers that were motivating for my son - Cars 2 stickers, and we would use a variety of rewards for bringing home good behavior reports , including milk shakes, toy cars, and DVD's.  Each of these was predicated on increasing his positive behavior reports.  the teacher had already been doing the behavior charts, but we were meeting and making it formal at an IEP meeting.

Initially I got no reports.  It was so odd, because I had been getting reports prior to the meeting and once it was part of the IEP I got nothing.  It took a few days to find out what was going on, but I was told the teacher thought that someone was making up a new behavior chart.  Why she thought this was a mystery as her chart was fine.  There had been no negative comments, no one said a new chart was needed, but what was even more unbelievable was that she felt using nothing was the strategy to use after having a meeting to discuss how vital my son's need was for support in this area.

Finally after two weeks of nothing the behavior charts were again instituted with the additional supports that were put together by the RSP teacher and the SLP.  It was working!  This was so great!  My son's behaviors were down to no more than one per day.  BUT, we had forgotten one important piece, no one had asked what happened just before my son behaved inappropriately.  We all fell lock-step into the idea that he misbehaved because of his speech issues.  I've read up on CAPD and I was ready to believe this, kids with CAPD often times have difficult behaviors as a result of not understanding fully what others want from them.  Okay, so we believed it, but apparently no one in the classroom was at all interested in what was going on that made my little guy so angry.

Shortly after we returned from the Christmas break I observed a situation in which another child was taunting my son.  This was at an award's ceremony and every child but my son got the trifecta of awards.  Perfect Attendance, Perfect Homework, and Excellent Behavior.  Really, every other child in the class was perfect?  Now, I don't think my son was perfect, but every other child was perfect?  I don't think so.  I have never seen such a situation.  I think there is something wrong with a teacher who can't see that only one child isn't perfect - it was bizarre.

After the kids got their awards one child was trying to take away my son's award. I watched as my son refused to give the child his award, apparently he had figured out the other child was planning to throw his award.  I walked away after that, thinking he was handling this so well.  I needed to check in with another mother and he was doing great.  Well, a few minutes later the teacher approached me and told me that my son had convinced another child to give him his award (a pin that was to go on the child's sweater) and he had thrown it.  She told me "It's too bad he had to ruin the whole day".  Really, he ruined the whole day?  What he did sucked and wasn't okay, but had he really ruined the whole day?  The pin was located and returned to the other child, my son apologized, and the "whole day" was "ruined".

Later that day I asked my son if there was anyone at school who was mean to him.  He immediately named the child who was trying to take his pin.  He said "______ is mean to me every day, every day."  Apparently no one had bothered to ask him what had happened, and even if they had he would have had trouble explaining his side, and even if he had the teacher had determined that he was the trouble and all the other students were perfect, never having teased or taunting my son, so there was no reason for him to share what had happened, he'd already been judged and found guilty.      
 

Up For Down Buddy Walk

Today was our first attempt at participating in a Buddy Walk.  Ours is a pretty small group but we managed to stop traffic for a quite a while anyway!  It was fun to meet some people I hadn't met before, run into friends we hadn't seen for a while, and see face to face some of my Facebook friends that I'd never met in person or only occasionally seen in person in the past. Our younger son doesn't have Down syndrome but is in a special education class and I just today learned that one of his aides has a son with Down syndrome.  It really is a small world, our special education bunch!

When we walked up to the registration table Megan saw another little girl with Down syndrome and immediately gave her a big hug.  It was so absolutely sweet and unexpected!  She sees that she is looking into a mirror of sorts and she enjoys that.  I have always believed that it is very easy for me to love every child with Down syndrome since they all look just enough like my own daughter that I feel a kinship with them.  I saw today that she feels the same.

Megan's autism got the best of us after a while and she just couldn't take anymore, but at least we got through the walk and got to be a part of something bigger than ourselves.  It seems that the money is going to offer great services for our families, free workshops, at least two monthly support groups for parents, and quarterly dances for those 12 and over with any kind of disability.  The dances may sound like no big deal, but I took my daughters to the last one, and it was such a great chance for them to practice being in a typical social situation without all the usual pressure.  That's what is so great about these kinds of events - the lack of pressure to do everything right.  They are separated by their disability already, so it's important for them to have a chance to practice and feel safe in making some mistakes.  It's also great for us parents to be able to sit on the sidelines and see if they are really ready for the social events at school that we aren't sure about.

I used to feel uncomfortable asking friends and family to support these groups but I'm starting to feel more comfortable with it now.  We can't do everything for our kids, but with support and encouragement like the kind this group offers we can offer our kids a better life and we can offer our parents a way to make that happen since none of us can do it alone.

Just one final word, our walk was done in memory of James Bond Jennings.  He was a young man in the group who died last year of pneumonia.  He had lost his mother to cancer just a few years before.  She was one of the founding moms of our little group and his dad, Grady, built his business around making sure kids like ours have a means of support after we parents are gone through Special Needs Trusts.  This is quite a family.  Grady with others put together a golf tournament to benefit the group in memory of his wife and son.  James' friends each shared something that they loved/miss about James and let go a balloon as they shared.  It was absolutely touching and brings a tear to my eyes even now.  I know whenever I see a blue balloon in the future I will think of James Jennings and how much his friends loved him.

CA State Bill 1317 - Truancy Bill

SB 1317 - WAS SIGNED INTO LAW

This bill provides a definition of a chronic truant. Provides that a parent or guardian of a pupil of 6 years of age or more who is in kindergarten or any of grades 1 to 8, inclusive, and who is subject to compulsory full-time education or to compulsory continuation education, whose child is a chronic truant, and has failed to supervise or encourage pupil attendance and has offered language accessible support services, is guilty of a misdemeanor.


So.......What we need to do is get the word out to parents about how to circumvent the issue. Things like putting your child in HHI (Home and Hospital Instruction). Kids with special needs who don't attend school have reason for not attending school that can easily be dealt with through getting a prescription for HHI and having an IEP to make this happen. A doctor must sign off on this and if a child's doctor won't I would simply change doctors. I have never had trouble getting a doctor to sign for HHI - I have a good relationship with my kids' doctors and they know I wouldn't ask for this without good reason, so it's always good to start with a good relationship with our kids' doctors. I know it isn't always as easy for people who are new to an area or if you are in an HMO but it can be done. The only time I had a doctor not sign for HHI was when he suggested it but felt my daughter's regular pediatrician should write the prescription because this doctor was at an urgent care and didn't have access to her records should any questions arise later. The kids I know with special needs who don't attend school miss due to frequent illness (compromised immune system? or congenital issues that cause them to be sick a lot, or frequent surgeries) or due to school phobia (a legitimate reason for HHI) or because the school environment exacerbates symptoms (like florescent lights that trigger seizures). I'm pretty sure there are other reasons, but this is a sample of ideas to help parents avoid the kind of mess this idiotic type of legislation can create.

A friend of mine went to an IEP with a family whose child went to a specialized program all year and then to school after. "Dad requested records and daughter had recorded eleven truancies. The school said 'oh our system isn't designed to take into account when a child is here partial days so that's why it recorded this way'. Then they said are you sure she wasn't absent at least x amount of days and tried to say most of these were legitimate. My friend said "Just imagine how a parent like this can be manipulated now that this law is passed. Sign this IEP or we will record those as truancies. Or they can imply it." And I believe that some unscrupulous school personnel would do this!

The good news was the district personnel admitted they did not have a way to handle this individualized situation and this meeting was recorded - I know the parent records all of their meetings as I do too. It's vital for just this sort of thing you might not even realize is going to come up! Their attempts to blame the deficiencies later would carry no weight in court because they had already admitted that their system was not able to properly keep track of absences in this particular situation. I would think though that the district might want to make their system capable of keeping track since they were not paid for the days they mistakenly recorded this child as absent, yet they were paying for the outside services regardless.

We had a similar situation with my daughter because she went to speech therapy in the morning and then went into school late every day, but we were protected because my daughter has behavior issues and the teacher and aide filled out a behavior sheet about her every day that she went to school. They would send it home in the afternoon or if a short day would hand me the behavior sheet the next day when I dropped her off. I had proof that she was there. Maybe the parents should set up some similar sort of safeguard if they know ahead of time that this could become an issue. Of course we almost never expect these things to be potential issues so we have to get the news out to parents that they should set up a plan ahead of time so they don't run into problems down the road.

I'm sure there are other ways around this, I don't know them because I can't think of every possible scenario where this could be a problem, but if you have creative ways to deal with this new law please post a comment.

Hopeless? Or Could it be Lack of Effort From the District?

We were told that our daughter was beyond learning to speak at the end of third grade and that she would have to go to using PECS exclusively.  The message was, she was beyond salvation and could never be taught to talk.  We were told that they had worked very hard for 4 years and since our daughter had made no progress she couldn’t be helped.  She would no longer (Ha! Like they ever had!) be given any therapy that worked toward talking but would instead receive instruction only on PECS (picture exchange communication system).  We reluctantly agreed (sort of), although we knew deep down that this didn't make sense, they hadn’t tried at all.  We pushed for teaching our daughter to say her name in speech, even being satisfied with a one syllable nickname since two syllables were so hard for her.  The SLP agreed reluctantly to include this goal.  The truth is before this our daughter was given collaborative speech (which equates to basically no speech) and one year of speech in which the SLP would not give our daughter any time if she was having a behavior - she has autism, of course she had behaviors all the time!  And what else they didn't tell us was that the school should have been giving us help to manage those behaviors so she could learn (but that's for another post).  So the one year that she was supposed to get speech therapy at school she almost never got it because the therapist didn't know how to deal with a child with behaviors!     

So, the district has never (well almost never) given our daughter speech therapy, and now they say they won’t give it to her and blame her lack of improvement for why they won’t give it to her when in fact they have never done anything to help her improve! 

When she changed schools, and was actually given small group speech and was learning to say some words; she actually said a few 2 syllable words which had seemed impossible.  She also started to say her name.  Her nurse and I worked with her on her alphabet, and she has learned all of the letters, saying most of the letters very clearly at this point.  This is the child who would not be able to talk.  She now says her name pretty clearly, and she has uttered phrases such as “Mondo, it’s your turn” and “I can help” with surprising regularity.  This is not an over zealous mom talking, this is based on reports from Megan’s teacher (the only one who has been doing speech with her for at least the last three months and probably the last three years except for her short time at another school).

Now, also to add insult to injury…. it is near impossible to get insurance to pay for speech and language services when children are in school because this is supposed to be covered by school.  In addition the insurance companies are writing into their policies that they will only cover this type of service for people who have had a stroke or surgery or they will cover only  a few sessions a year, even lumping together speech, occupational, physical, and any other kind of therapy you can imagine into the few sessions they will cover per year.  This leaves our children with NO OPTIONS for getting speech therapy unless we are rich and can afford $85-130 per hour for therapy.  Some states, ours included (CA) have added protections for kids with autism, but they seemingly don't apply to kids with more than one diagnosis, like autism and mental retardation, which correct or not is often assigned to many kids with autism.   


The only way we have found around this is to get an Independent Educational Evaluation.  I will post more on this in another post, but the basic concept is, get an expert in the field (district personnel are NOT experts) and have them do an evaluation of your child.  You can have this done at "public expense" which means that the district pays for it.  These experts (if you find good ones) will diagnose your child and will suggest how much and what kind of therapy would be helpful for your child based on ethical guidelines, not on how many hours they are allotted or allowed by the school district.  The district will try to tell you which experts you can and cannot use but the truth is I would never use the experts our district recommends unless I have also heard through people I trust that these experts are thorough and ethical.  The ones recommended by the district may be recommended because they will say what the district wants them to say.