Things I'm Learning From Megan - 1

I have to stop myself from saying - "She just said hello to you" - with some attitude when people ignore my daughter's cheerful "Hi".  She is teaching me that it doesn't matter how they react to her, that I should just do the kind thing, the nice thing, the loving thing, like her.

Sample Questions For an IEP

We had some issues with our last speech offer.  My daughter has severe speech issues, called apraxia of speech , which requires  a lot of speech therapy.  The recommended amount is from 30-60 minutes per day, five days per week, for someone with her severity of the condition.  All therapy, at least at first should be individual.  Last spring it was recommended that she receive two thirty minute individual sessions, and one thirty minute group session.  Below are some of the questions I wrote down to ask at the IEP meeting in order to make the point that the SLP may not really be recommending what was needed.

How important is speech to education?

How do Speech-Writing-Reading tie together?

How do you determine how much time to spend with a child who has the need for speech therapy?

Is what you're recommending within the standards suggested by your professional guidelines?

What are those guidelines?

Do you have a copy of those recommendations available?

All I have been able to find in the literature (published by ASHA) is that children with apraxia should receive between three and five hours per week of individual speech therapy, but you have recommended only one hour of individual speech therapy, do you have any specific clinical justification for that offer?

You have never worked with Megan or evaluated her, how do you justify making ANY recommendations for her with so little knowledge of her?

In your report you state that "based on the assessment results, the structure and function of the speech mechanism does not appear to be adequate for speech production" yet therapists who have actually spent time with her and done a thorough evaluation have recommended that she be taught to speak, how do you explain that?

In addition, she is able to say many words, you even state this in your report, she is just not able to communicate effectively, so this seems to be contradictory. How do you explain this contradiction?

What types of speech therapy are recommended for apraxia?

ASHA (on their web site) recommends only individual, no group for apraxia, yet you recommend group therapy for Megan.

Is your recommendation based on what is recommended by the standards of your profession or is your recommendation based on what the school district is telling you to offer?

Does offering far less than the standard of care conflict with the ethical guidelines of your profession?

Also, in your report I see you state that you did a direct assessment, what direct assessment was that? 

I could find no report of any kind of actual test or assessment given in your report?

You report that Megan was "slow to engage", I have seen her be slow to engage with some people and engage rather quickly with others. 

Of course slow and quickly are rather subjective statements, do you remember what you considered "slow"?  Was this slow for a typical child?

Slow for a child with Down syndrome?

Slow for a child with autism?

Slow for a child with Down syndrome and autism?

You also report that she kept her body turned and did not readily engage in play.  Have you observed her to be the same with others?

Have you observed her to behave the same with people with whom she is familiar?

In your report you state that "her communication is disrupted by her non-compliant behavior and difficulty expressing her wants and needs in an effective way." p.4

BUT, on p.5 in the conclusions you do not mark the box that says "Student behavior during evaluation" would have been a factor that appears to have affected the results of this evaluation.  So, was her behavior a problem or was it not a problem?

You also write "Megan's progress in the classroom is limited by the inconsistency of her communication aids and by the lack of generalization to the classroom setting".  It sounds like you are saying that the communication aids were not kept up?

Who was supposed to have kept those communication aids in workable order? 

Didn't her IEP include goals for assistive communication?

Shouldn't the person who was working with her from the district been keeping her communication aids in working order?

If not them, then who?

The final paragraph of your report states that "Megan's behavior had been described as increasing in non-compliance since the beginning of this school year.  Most of her school day is spent dealing with her refusal to complete her school work.  This is seen as a decline from last year."

Who was responsible for helping Megan to manage her behavior?

Are we to assume that the disabled child who has a condition (autism) that results in the very behaviors which interfere with her ability to gain from her education environment was allowed to continue to have increased negative behaviors?

What was the district doing that you know of to manage those behaviors at school?

Who was ultimately responsible for changing the behavioral situation at school?

Why weren't those behaviors being addressed adequately so that Megan could learn in the educational environment?

I have in my possession two different reports for this particular speech and language evaluation.  One that I recieved two days before the other.  The first report dated 3/3/2010 recommends continuing her then current speech and language therapy at five hours per week of individual therapy and no group therapy.  The second report, dated 3/5/2010 is the one that was discussed at the IEP meetings on 3/7/10 and 3/15/10.  It recommended no specific amount of speech therapy but it did recommend small group speech.  In the IEP meetings the offer for speech therapy was one hour of individual therapy and one half hour of group speech therapy.What changed between 3/3/10 and 3/5/10?  I was told that there was a "pre-IEP meeting on 3/4/10, is that what changed your recommendation?

IDEA states "The parents of a child with a disability are expected to be equal participants along with school personnel, in developing, reviewing, and revising the child's IEP. This is an active role in which the parents (1) participate in the discussion about the child's need for special education and related services, and (2) join with the other participants in deciding what services the agency will provide to the child."

In order for parents to take an active role in the IEP they must first be invited to the meeting.  We were not invited to a meeting on 3/4/2010.  In order to convene a meeting without the parents in attendance the district must, by law, have made every attempt to include the parents and the district must be able to prove that they were unable to convince the parents that they should attend.

In a due process case in Ohio, the hearing officer explained the importance of the IEP meetings, "The IEP meeting is supposed to serve as a communication vehicle between parents and school personnel, and is supposed to enable both sides, as equal participants, to jointly decide upon what the child's needs are, what will be provided, and what the anticipated outcomes may be."   When meetings are held secretly that is in direct contrast to the law as set in IDEA.  We were not allowed to communicate, be an equal participant, decide with the district what our child's needs were, and what the anticipated outcome would be of one set of therapies versus the other.

In fact, this "pre-IEP" meeting and it's work product denied our daughter FAPE just by the fact that it took place according to IDEA.  Was there a "pre-IEP" meeting before today's meeting?  What was decided at that meeting?  If there was, would you admit it?  Would you feel comfortable testifying to that under oath in court?  Because it could come down to that, and I do have the proof I have told you about, and in fact my attorney is holding that proof at his office.

 For feeding/swallowing (which I was told for years is NOT a school issue) -

Does ASHA offer guidelines as to whether swallowing (feeding) fits into an educational setting?

Can you show me that in writing?

I believe that part of why Megan has such difficulty with muscle tone in her mouth is because she cannot eat.   

So, since the school should have been helping her with eating issues, this would have laid some groundwork for learning to speak.  But since the district straight out lied to us about the school's role in feeding/swallowing therapy the district in fact made it more difficult for my daughter to learn to speak when she was younger and more open to learning both feeding and speaking.

This district seems to think that she should be able to overcome her apraxia in the same time-line of any other child with apraxia but in reality she is receiving the therapy so much later than she should have that it will take significantly longer for her to gain the skills necessary to speak.  Who but the agency responsible for her only receiving those services so late should take the responsibility for that and commit to the long term fix that is now needed?  I was aware of her needs, advocated for those needs, and was told "no" over and over.  I did what I knew then to do in order to force the issue, but was faced with lies and deception from the district.  I thought the district personnel were being honest with me about their plan, when in fact the plan was to avoid giving my daughter necessary speech and language services. Now that I know what was going on I expect the district to do the right thing and make up for their egregious failings with my child.  The district caused this problem to become this big and the district needs to live with how big it now is and make it right.  Expecting her parents to fix the problems created by the district is basically an attempt to steal from the children (and their parents) that you, the district are charged to educate.

I am not necessarily comfortable with being as direct as these questions are, that is why I wrote them down.  It is much easier for me to be direct when I have a script in front of me.  Also, I may or may not ask all of the questions I have prepared.  It really depends on the answers.  In this particular case the SLP who had done the evaluation the year before was no longer there so I used very few of my prepared questions.  However, I was so much more prepared than I would have been otherwise that I was still able to ask difficult questions and I could focus on their answers.

I also prepared questions for the general classroom.  I asked these questions of the Neuro-psychologist who observed her in the classroom setting.

How much of the time that you were in the classroom did Megan spend working with the

 teacher and or the aide?

Did they say anything that made you believe that the day you visited was significantly 

different from other days at school?

Was there anything that made you believe that there was anything unusual about the 

day you observed?  

So, if this is the usual school day for Megan it would be safe to assume that she might 

get about 1/2 hour of actual instruction per six hour day of school?

This would then add up to about 16 days of instruction per year.  Would this in your 

professional opinion, be FAPE?

What is going on in the classroom that is keeping Megan from learning?

Why is it, in your professional opinion, that she is having these behaviors at school, 

when these behaviors have been severely reduced in other locations?  

Such as dance class, ot, home, physical therapy.

How can we increase the amount of learning time for Megan to benefit from her education?

What specifically does she need that she is not getting in the classroom?

Last year the district promised to send her one to one aid for training with the ABA 

company, is there a reason that hasn't been done?  Why wasn't this done?  

Wouldn't it have made sense to do this while she was out and in HHI? 

Again, I did not ask all of these questions, but having them ready prepared me for a very difficult 

meeting.  I recommend having this sort of thing ready, even if you don't use any of it, it will 

prepare you to keep the meeting focused where you want the focus to be.  

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.

Medications?

BIG DISCLAIMER: I am not a doctor, I don't pretend to be a doctor, and I am not giving medical advice here. I am giving my opinion as one parent to another about how I consider psychiatric medications and how they may or may not be used on my child. I don't advocate FOR or AGAINST medications. This is a highly personal decision, but since I have some knowledge of these types of medications due to the fact that in my former life(before children) I worked in a psychiatric hospital with patients who suffered from a number of severe mental health issues so gained a bit of understanding of different types of medications used for psychiatric disorders so I make somewhat informed decisions about my child's medications. I don't know a lot about specific medications and i don't intend to try to explain how drugs interact or work on different parts of the brain or anything like that. That is what doctors are for, but having a working knowledge of the kinds of medications that are used and what those classifications means helps me to make more informed decisions about my daughter's medications than a lot of other people are able to make. This is just me sharing about how I think when I hear a doctor talking about which medications to prescribe for my child, and I think it might help if you don't ahve this sort of knowledge.

I was talking to a mom today who was sharing about her daughter with autism and ADD/ADHD having been medicated in the past and that she believes she may want to try medications again. I am not an anti-medication person, I medicate my daughter and although I wouldn't be so rude or presumptive as to tell others they should medicate, I also wouldn't tell others not to. A lot goes into that sort of a decision. What this mom shared though, shocked me! Not because I would expect her to know about classifications of drugs and what different drugs are intended to do, but having some experience working with psychiatric patients I have some limited knowledge of some psych medications and it seemed that her daughter had been given medications for symptoms she just did not have.

In the psych med world there are basic types of medications. Anti-anxiety or tranquilizers which are used for anxiety (no duh right?). Then there are anti- depressants which are for what else, depression. Some of the anti depressant medications are also used for anxiety disorders and for Obsessive Compulsive Disorder. There are mood stabilizers which are mostly for people who have mood swings, usually with Bipolar disorder. There are medications that are intentionally designed to help with both anxiety and depression, because those two so often go hand in hand and they are sometimes used for people with Bipolar disorder too. Then there are the big guns, anti-psychotic medications. These are really strong medications intended for use for people who have a condition called psychosis. Psychosis is a condition that is characterized by the person not being in touch with reality. People with psychosis see things that aren't there, hear things that aren't there, have thought disorders like paranoia or even odd thinking, an example I heard recently about a young man who shared that his hair was growing back in on his head (I have no idea why it was gone in the first place but it was) and he said that the hair coming back on his head was itching his brain. That is a thought disorder, it doesn't make any sense in our world that we consider "normal". A client I worked with at one time believed he was the "Ambassador from Mars", this is another type of thought disorder. In addition to these drugs are the medications generally given for ADD/ADHD which most often are stimulants, but at least one is a non-stimulant, it is called Strattera. They also use some blood pressure medications for anxiety and ADD/ADHD, the newest being Intuniv, which is a long acting form of a blood pressure medication that is given in doses much lower than are used for patients with high blood pressure.

So, this woman was telling me that she had hoped to get back into her daughter's former psychiatrist, but he didn't have any openings. She told me that her daughter had been on Risperdal (an anti-psychotic) and Abilify (a mood stabilizer/anti-psychotic). I don't know this woman's daughter but we have spoken several times before and this surprised me. I asked if her daughter was aggressive in the past. She said no. Was she self-injurious? Did she have extreme melt-downs in which she could have harmed herself? Did she hear voices or anything like that? She said no. All she had felt she needed the medications for was her ADD/ADHD, and she shared that really her daughter wasn't especially hyperactive, maybe impulsive but not hyper. So why would the doctor have put her on such a strong medication? The other thing that struck me was that the medications hadn't helped with her daughter's ADD/ADHD so she had stopped medicating her thinking that medication wouldn't help her child. The only reason she is going back to visit that idea is that the RC suddenly terminated her daughter's ABA when the child was out of school for summer break, so she also had no ABA funded by the school district and she was seeing her daughter regress and have behaviors she hadn't seen for a long time. She doesn't want to see her daughter forced into a more severe classroom that she needs because her therapies were abruptly ended so she is feeling a bit desperate.

So I'm thinking, "Isn't God good? He kept this child from going back to a doctor who was giving her medications for conditions she doesn't have and not giving her medications for the condition she does have!" Then I got to thinking back to my early college psychology classes when we were taught that autism was supposed to be "childhood schizophrenia". We aren't completely sure about what autism is and what it isn't but we can be very sure that it isn't any kind of schizophrenia, it is completely different.

So, when a psychiatrist starts naming off medications for MY kid I want to know what kind of medication they are talking about. Are they talking about prescribing an anti-depressant, an anti-anxiety, an anti-psychotic medication, or are they talking about prescribing a stimulant or non-stimulant medication to help with ADD/ADHD symptoms? If I go in and tell the doctor my child is having sinus problems and they want to put a cast on her arm I know something is amiss. It's the same if I say my child seems to have or has been diagnosed with ADD/ADHD and they want to give her an anti-psychotic medication.

Autism is not a psychotic disorder. There are no medications that have been studied and found useful for autism - although there are medications that are used for different symptoms of autism. Now, kids with autism can have all types of psychiatric problems and many do, but we can't give them a pill and have the autism get all better. Many kids with autism also have ADD/ADHD. Another problem that is often concurrent with autism is anxiety. OCD (Obsessive-Compulsive disorder) is highly correlated, and kids with autism are more likely to get Tourette's Syndrome than in the typical crowd. So our kids may benefit from medications for some or many of these issues. Heck, we even fostered one beautiful child who had both autism and schizophrenia. This is very rare, but once she was given anti-psychotic medication she started sleeping because she didn't have the voices in her head keeping her awake all night. For her, anti-psychotic medication was beneficial, in fact it was nearly a miracle to watch her come out of her psychosis and begin to enjoy life, but then her father had been diagnosed with schizophrenia so she came by it genetically and she wasn't being medicated inappropriately. Occasionally kids who are very aggressive can benefit from anti-psychotic medication, even then I would want to try other medications first, medications that have less side effects and less possibility of long term effects. We need to know why a doctor is giving our children the medications they are suggesting. We need to know they aren't living in the dark ages of calling autism "childhood schizophrenia" and medicating for a condition that does not exist.

I always ask questions like what classification of medication is that? Why do you think that particular medication would be better than another for my child? What side effects should I look for? Which symptoms is that particular medication supposed to help with? The answers give me an idea of what the doctor is thinking. Are they thinking my child has an attention problem or do they think my child is not based in reality? I know which it is, do they? I also ask my pharmacist a lot of questions, but then I have a great pharmacist, not everyone is so lucky, but it's great if you can find one who will answer your questions and go over side effects with you.

I hope I'm not being too "preachy" here. I just had not realized how blessed I am to have the information I have and how unfortunate it is that some doctors will just make so many bad decisions for parents who aren't in the know. If you aren't sure about a medication that is prescribed for your child, ask the doctor about it, if they get defensive, find another doctor. Look on the internet and find out what kind of medication your child is prescribed, get to know what side effects to look for, if you don't get a list of them with the medication, go online and Google (or Bing or Ping or whatever) the name of the medication and side effects (i.e. Prozac side effects). Ask therapists since they are trained in medications even though they don't prescribe. Ask your child's other doctors, their pediatrician or immunologist if you are unsure about what to do. Get multiple intelligences going. Being nosy could be the very best thing when it comes to medications for our kids with autism.

Finally: If you are interested in looking at more information about medications I have included a medication gadget to your right. I'm sure I will add additional links as time permits but this are some of the best links I could find right off the bat.

Who Among Us is Really Sure We Couldn't Be Next?

Autistic Teen Clings To Life After Stabbing
Boy Moved To A Different Hospital

Reporting
Andrea Menniti
MODESTO (CBS13) ―

Neighbors of the mother accused of repeatedly stabbing her autistic son say they had only known the suspect as a devoted mother and autism activist who loved her son more than anything.

Anitra Hankins, 36, is under suicide watch in Stanislaus County custody on charges of torturing, tying up and viciously attacking 13-year-old Miles Hankins on Sunday night.

"He had stab wounds all over him," said next-door neighbor Christopher Tooze. "A big stab wound in the head."

Acquaintances were at a loss to describe how the incident could have happened. Anitra Hankins was regarded as a great mother who once served on the state Council on Developmental Disabilities.

In her 2004 resignation letter to the board, Anitra stated, "My health and that of my special needs child will not permit me to continue fulfilling my responsibilities as I would prefer."

The single mother passed out fliers and held prayer vigils for Miles in May while the boy underwent dangerous but lifesaving surgery, neighbors said.

"For her to do that, it seems like Dr. Jekyll [and] Mr. Hyde, you know," said neighbor Gordon Jameson.

Miles is still listed in critical condition at the hospital. He has was transported to a different, unnamed hospital where he remains under the care of child protective services.

A memorial supporting Miles is growing outside the Modesto apartment complex where the attack took place.


There isn't a lot to say here except that the people who are charged with helping our kids to learn to live with some meaning need to get a handle on actually doing that job. I am so grateful that I have friends and a husband I can talk about my frustrations, fears, and anger with. Though the friends are few these days since most people don't understand what we go through and want to avoid it like the plague. I completely understand how parents can go over the edge when it is a struggle every day and on top of it we have to fight-fight-fight for just the basics for our kids. All I ever used to ask for was teach my kid to talk/understand/communicate. Now I want more, but not much more, I want her to get enough services and educational benefit to live a safe and happy life. I'm sure there are a lot of other parents who feel the same, yet we meet confrontation at nearly every turn. It's no wonder people suffer psychotic breaks, most of the time it seems impossible to help our kids and that kind of stress can overwhelm, especially if one does not have a good support system. If we think we could never be in this woman's shoes then we are the most vulnerable. Realizing that any of us given the right (or is that wrong?) set of circumstances could suffer a moment or more of insanity is vital. It is in the preparation for such an event through the building of support and personal transparency that will keep us from this type of tragedy.

Assessments: Fool Me Once - Shame On You!

My daughter who has Down syndrome and Autism and is primarily non-verbal at this time was recently given a psycho-educational evaluation by one of the school district psychologists. He gave her a few tests, one is the WASI which is for verbal kids, she had a lot of trouble with it. In his defense, he also gave her a non-verbal test, the NNAT. Their website, which the school psych could have read, says that the NNAT “is frequently used as a screening test for gifted program entry.” Also, “The NNAT® is commonly considered to be a difficult test.” Maybe that's why she seems to have made no gains, perhaps even regressed since her last testing, when in fact anyone who knows her has seen real improvement in her functioning, in her speech, and in her behaviors. The use of this very inappropriate test makes it appear that she is not getting any benefit from the services the district is providing. This then becomes their excuse for offering no more services or at least severely limiting what services they will offer.

In addition, the "very qualified professional" they used to evaluate our child called her "mentally deficient", deficient for what? Deficient for doing brain surgery I would agree, but too deficient to gain in a special education program? Early on we believed what we were told by the people at the schools, we believed all the people in the schools who told us that she couldn't have Down syndrome and autism together when in fact they were mistaken, or wrong, or I don’t know, possibly even intentionally keeping her from getting the help she needed. Mentally deficient is not a term used by any professionals for diagnosing children with learning disorders or other pervasive developmental disorders. It is NOT in the Diagnostic and Statistical manual of Mental Disorders or in the ICD-9 used by physicians. It is also insulting and inappropriate.

We as parents must be vigilant in areas we never expected in order to make sure that our children receive the fair and appropriate public education they are to be given by law. Luckily, thanks to our attorney I have learned to check every test on the internet that is given to my children. The people who sell the tests want to make sure that the districts and the evaluators who purchase them know what the tests are for so they give pretty good descriptions. We can’t always know why someone might give our child a test that seems inappropriate without asking because there may be information in the test that isn’t advertised, but this kind of testing can’t really be justified! It seems to me that every time we have an IEP it is another opportunity for me to learn, they may fool me twice, but never with the same bag of tricks.

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.