When Rain Hurts by Mary Evelyn Greene

June 11, 2010


Peter During One of his Many 24-Hr Ambulatory EEGs (2008)

June 11, 2010.  Week One of our Due Process Hearing is complete with no end in sight.  This morning I call the Center for Spectrum Services to investigate possible appropriate programs for Peter.  The name of the school is self-explanatory, so suffice it to say it’s the only game in town that has a self-contained program for high-functioning autistics.  Within a 90-mile radius of where we live, however, there are no special education schools that accept private pay students; all students must be referred through their local school district.  This puts us in a definite pinch.  If the school agreed to refer Peter, and if the autism school had an opening and agreed to accept him, its possible that he could attend and actually receive some neurocognitive rehabilitation for his deteriorating brain.  I shouldn’t and won’t talk about the details of the hearing right now, but I will share something interesting I learned on the phone.  The woman from the autism school tells me there are kids in the high-functioning program with average and above average IQs, some are working above or at grade level, at least in certain subjects, and that their social skills run the gambit.  Peter would have higher functioning peers there, which certainly is preferable though not a necessity given the scarcity of options.  But when I ask whether any of the children have toileting issues, the woman emphatically replies no.  When I relay the fact that Peter is incontinent, she explains that he absolutely would have to be placed in a lower functioning classroom with staff trained and certified to address fundamental life skills.  Despite the fact that Peter cannot be enrolled in a program for high-functioning autistic children because he’s not toilet trained, his school nonetheless continues to insist he’s perfectly suited for and is thriving in the inclusion classroom that consists of 16 regular education students and 6 special education students.  Never mind that the teacher cannot be present in the bathroom to ascertain whether he toilets (as opposed to stares at the ceiling), cleans himself, or washes his hands.  Never mind that she or anyone else in the school cannot physically check to see whether he’s wet.  How can he be high-functioning enough for a regular public school classroom but not a self-contained program for autistic children?  I feel like I’m in warp world, trapped in one of Peter’s confused mindsets where nothing that’s heard, seen, or experienced makes a lick of sense.  The saddest part about the way I’ve been feeling lately is that its exactly the way Peter feels every day, this particular day being no exception.  Lindy comes upstairs this afternoon after her session with Peter to report that she found him in the bathroom pouring water and liquid soap on the cat’s back.  He perseverates over liquid soap bottles to such an extent that I’ve removed them from our bathrooms, though I obviously forgot to check the basement.  At dinner I try to coax Peter into biting his room-temperature strawberries with his front teeth instead of his back molars so that he doesn’t spread strawberry juice all over his face, nose, and chin.  On the cusp of success, I suppress a smile as I watch him bite into a strawberry in a normal fashion, for the first time, to my knowledge, in his life.  But then he yelps, squints his eyes, and covers his mouth with both hands.  “It hurts!” he cries.  “Why you make me do that, Mom?”  He can’t bear the sensation so I praise him for trying and quickly try to distract him.  The last but not least noteworthy event in Peter’s confused day has to do with Sophie complaining about the sudden disappearance of her Lego creation, which she thought she left on her bed.  Several weeks ago Peter had some Legos taken away for bad behavior.  When Sophie asks about her missing Legos, he immediately launches into a diatribe about how I took them away because of his behavior.  The long past memory assaults his presently firing synapses with the unrelenting ferocity of a B-52 bomber jet.  Rocking and covering both ears with his hands, he begins his increasingly familiar high-pitched humming and then switches to mumbling about Legos and washing machines and hating Sophie.   At one point Pat and I thought we calmed him down enough to understand that he wasn’t in trouble, that he misheard what Sophie said, and that he was confusing what happened weeks ago with his sister’s question tonight.  “My head gets confused, Mom,” he says, as I walk him gently upstairs.  When we reach his room, Sophie pops out to say that the missing Legos have been found and all is well.  Simply hearing the word Lego sends Peter into a tailspin again and the entire ordeal begins anew.  Last weekend we learned our son’s IQ dropped 10 points in the last 2 years and his previously unorganized thought processes have transformed into profoundly unorganized thought processes.  At this rate he’ll be a babbling, terrified idiot in diapers by the time he’s 12.  We brought him from Russia to give him a better life and a more hopeful future.  There was a time, after we discovered at least some of his disabilities, when Pat and I consoled ourselves with the knowledge that he still would benefit from our love and the resources available in our country.  But sometimes I think we were just fooling ourselves, looking for a silver lining that existed only in our dreams.  It seems we hauled this poor boy half way around the world to dangle relief and rehabilitation in front of him like a colorful lollipop held just beyond reach.  He’s been victimized by institutions in this country to the same extent, and arguably more, than he ever was in Russia.  The only difference is that here, in Red Hook, New York, USA, there are beautiful flowers and well-tended playgrounds adorning the institution known as our local public school, and the bureaucrats that are exercising their unilateral will over our son’s future don’t get drunk every night on Vodka to escape their unfulfilled existences.  They drive Volvos and coach Little League on the weekends.

12 Comments »

  1. My heart hurts for you and your entire family. There is no way I can ever imangine the nightmare you are living. I will keep you and your family in my prayers. God is the only source of peace in such a situation as you have been thrown into. Peter is so blessed to have you and Pat in his life. This is no accident. There is something wonderful somewhere in this journey you are on.

    Comment by Sherrie — June 11, 2010 @ 11:27 pm | Reply

  2. I no advice other than what you already know; that you have to keep fighting. That you know you will keep fighting.

    My reading has been sporadic so forgive me if you have already done this. Have you contacted a local representative or senator? The media? Anyone that can get your story out there and create outrage and perhaps apply some pressure?

    Sadly I see over and over again how school districts misrepresent the truth to parents so they don’t have to be financially responsible for a more costly placement.

    Just parenting our kids is exhausting. Add in everything we have to do to fight to get them the help they need and its a miracle that we don’t go completely insane ourselves.

    Comment by Kristine — June 11, 2010 @ 11:34 pm | Reply

  3. I have been following your journey which is not unlike ours…we are just further along. Please try not to think too much about IQ scores….they are a moment in time and the tests themselves are geared to a “normal” brain…not one that has been
    damaged in any way let alone one that is on the autistic spectrum. Everyone gets way into the “what’s the diagnosis” issue
    when I have found in the world of mental issues is just useless, since unlike an infection where it is easy to run a test
    and figure out which antibiotic will be effective, mental issues are by observation and treatment is trial and error….unfortunately error seems to trump success. The other issue which NO ONE…regardless of their training..in my
    opinion..can be sure of is what is behavior and what is mental illness or brain disfunction? You are doing the best you
    can with a very tough situation. Our son,now almost 14 came from russia at 11 mos of age. Diagnosis…the alphabet soup,
    stuck between behaviorists, neuropsychs, psychaitrists and educators. Medication trials…too many to list here…School
    expulsions, hospitalizations ..numerous..including residential treatment at age 9. If there is anything I have learned that
    I would share it’s to look at the symptons that you are trying to control. Our son suffered from secondary ennurese (sp)
    at about age 8-10…had to use DDAVP which worked..I think the cause of his toileting accidents was medication and his
    not being stable. As I’ve read your postings I think that Peter is not doing it on purpose…he wants to please you it’s
    just that by the time he gets the urge/feeling it’s too late….and then he tries to hide it. Think about the Friendly’s
    episode when he ran to the bathroom and then didn’t want to come out…

    Our son is not that different from yours…we have been through “H” and back with him.
    He has been tried in many school settings and is now in a school that specializes in behavioral students. He has a one on
    on instructional aid and his academics are tailored to him. We finally have a “cocktail” that works
    which includes Tegretol (rage), tenex (impulse control), Topamax (rage), Risperdal (low dose…..has been higher but actually
    causes anxiety and rage…needs a little to keep thoughts in the moment), Celexa (low dose for anxiety). He still and will
    always be autistic(HF) but we can now enjoy time as a family,,,no walking on eggshells.

    You are doing a great job with Peter but you need more help….Have you tried the county mental health services? I know it’s
    different in every state. We are in California and here the autistic diagnosis helped the most with getting services including
    in home aba and respite.

    Will continue to follow your journey….feel free to contact me if I can provide any help or suggestions….
    and finally try to take some time for yourself..to recharge your engine.. so that your family can be the best it can
    be

    Comment by Cathy — June 12, 2010 @ 1:03 am | Reply

    • Cathy, thank you for your thoughtful reply. Its so nice to hear from other parents who are going through the same thing. To answer a few questions/observations: though I agree with you that IQ is not the only measure, he has dropped considerably in his neuropsychological functioning across all domains, which Dr. Federici interprets as significant, organic (meaning physical) brain deterioration. And yes, we do need more help. Services are not abundant in our area but we are trying. We’re in the process of getting Peter a medicaid waiver, which I understand will make us eligible for respite. Last, I think Peter’s wetting problems are a combination of things – there is definitely a behavioral component – all his doctors agree – but I also think he is at times so overstimulated, distracted, etc., that he’s not aware of his own signals.

      BTW, we have had similar episodes with Peter – increased rage – whenever we have tried to increase his Risperdal dose.

      Thanks again and take care – Mary

      Comment by whenrainhurts — June 12, 2010 @ 11:47 am | Reply

  4. Hello Mary,
    By way of schools – have you looked into the Pathway School? They are in Pennsylvania a little this side of Philadelphia. I visited there when considering options for Katie. They are wonderful as people and wonderful as a program. My school district Director of Special Education said that they are perhaps the best residential-therapeutic school in the country.
    Christopher Duncan

    Comment by hudsonvalleyeducationadvocates — June 12, 2010 @ 6:29 am | Reply

  5. Seems like you are in a bad position that the school has to make a recommendation for him to get into a school he needs. Have you considered moving to another location outside your current school district?

    I know I mentioned the FACE school before and see from your posts you have visited St. Petersburg FL but dont’ know your ties.

    Someone I know has a Russian adopted son similiar to your son condition and he was accepted into FACE and is making improvements there that he was not making in the public schools. http://www.faceprogram.org/ I read your blog and your stories and her stories are very very similiar.

    Comment by K — June 12, 2010 @ 9:55 am | Reply

    • I grew up in St. Pete and my brothers still live there (and in Tampa). We already moved once to get our son in another school, at incredible financial loss. We just can’t do it again, unfortunately. But thank you so much for thinking about us (and possible solutions!)

      Comment by whenrainhurts — June 12, 2010 @ 11:40 am | Reply

  6. I don’t have a ton of time to expound, but, the “quick” response to your posts is this… Mary, it is exactly what you write that brought us to the decision to homeschool. I am a nurse by education, my children had attended parochial schools– as did I my whole life. I absolutely did not dream, desire, (add verb here)to be a homeschool mom. I have an aversion to denim jumper dresses. (Just kidding…) I seriously cried when my husband suggested the idea. I said to my husband, “How dare you put THIS on me? How can you put Grayson’s future, his therapies, his education, his development on ME? I cannot be responsible for the success/failure of all that ails him. I need him to go to school that I may be “re-fueled” during the day and be ready to parent him again later in the day.” Not just “no” but “hell no.” Well, as often occurs, the thought began to creep in on me… I discerned in great prayer what God’s will was for Grayson. I became convicted that this was “one of those times” when I was being called to be self-less in his best interest. I removed him from school over the Christmas break of first grade. Here we are, four years later. Without a doubt, it was the absolute best decision we have EVER made for Grayson. 2 years after bringing Grayson home, we brought our older girls home for school, too. Now, my oldest will begin Bishop Lynch High School in the Fall– dual-enrolled in college as a high-school Freshman. Hilary (also FAS but not nearly as severely effected; although still in pull-ups 100% at night at 12 y/o) is now going into 7th grade (homeschooled), Grayson is going into 5th (home) and our youngest begins Kindergarten at St. Joseph’s in August. I am not saying/judging your decision to “fight” the school system. But observing all that you write and realizing the profound effects you say the system is having on him, maybe discerning removing him from said system is appropriate. 99% of people that hear I homeschool say to me, “I couldn’t do it.” Well, there are too many curriculums that make the education part a no-brainer. If you can set aside 2 hours a day to turn pages in books and turn on your computer, the education part will happen. Then, you can work on life skills, crafts, outside play, potty training, etc… Also, getting kids to therapy appts becomes a breeze b/c you’re not fighting the school schedule there, either.

    I pray that the needs of Peter and your entire family are met to your satisfaction in whatever venue Peter is cared for… I commend you for making Peter’s plight a fight you’re willing to take on. Hang in there, Mary. Bless you!
    Amy

    Comment by amy dorsey — June 13, 2010 @ 9:49 am | Reply

    • Thanks Amy – and I hear you, loud and clear! We may be there if there are no other options but we still need the school to pay for it. Peter has so many things going on besides just the FAS that we need serious rehabilitative help. He is going downhill in terms of his brain function and its not just academics – its everything. Hearing voices and seeing things (the Grinch crawling up the walls, tiptoeing down the stairs, robbers in the house, etc), is not a good sign and scares the living heck out of us. And yes, I do feel homeschooling would kill me, I’ve already exceeded the limit of what I thought I could endure, but if it doesn’t, I’ll have learned something more about myself, as you point out, and if it does, well, then at least I will have gone out trying . . .

      Nice to hear from you, as always. I admire your strength tremendously. Be well – Mary

      Comment by whenrainhurts — June 13, 2010 @ 10:01 am | Reply

  7. Mary,

    If the school doesn’t ‘decide’ to refer Peter, I am sure that the state department of education can help clarify that matter for the school district…lol

    Also, the timing of the interview today, and your upcoming book, should be quite the motivator for the school district to get with the program…lol I cannot imagine that the school district would actually want bad public relations.

    It’s just all such a shame it takes so much for some people such as at the school district to see the reality of the situation. It should be common sense to help a child. But then, I’ve always been called an Idealist. I call it compassion…and when it’s a kiddo, like mine, it’s simply love. :)

    Lori

    Comment by Lori — June 15, 2010 @ 10:03 pm | Reply

  8. I’ve not read the entire blog, but my wife, who knows Kim, here in Yucaipa encouraged me to write you a note.

    I am a public school teacher at an inner city low socio-economic middle school. Over the last ten years I have had several autistic, fetal alcohol syndrome students. It tears my heart when the school system refuses to deal with special needs children with the child’s best interest at heart.

    I also spent ten years studying Russian history. One can hardly fathom the catastrophic results of entrenched bureaucracy. School districts are microcosms of bureaucratism run amuck.

    Last year we went to battle for my son for the opposite reasons that you described (our school district wanted to place him in a restrictive environment, which was not what was right for him). My son is dyslexic. My wife and I went through every mine field the school district could place and finally won our war.

    I know the battle is hard, but keep fighting for Peter. I’ll be praying for all of you.

    Comment by David — June 17, 2010 @ 10:32 pm | Reply


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