The Individual Education Plan or IEP Part 2: What services should I request? Thursday, Nov 12 2009

Okay, so you have your IEP meeting scheduled and the team is preparing to assemble. Now its time to get ready. Most school districts are not going to volunteer any services, so you need to be clear about what you need going in. If possible, include your spouse or partner, and talk about what supports your child will need.

Prior to the meeting you need to write a Present Level of Performance, or PLOP. This is your chance to say something good about your child. I was lucky enough to attend a wonderful class on writing a PLOP at our local Parent Resource Center. I learned a number of strategies for presenting my son’s challenges in a positive way. The real key, I have found, is to search for causes. For example, my son is very active. However, his activity level has 2 causes. One positive, his natural curiosity, and one negative, his sensory overload. So, in his PLOP, I characterize him as being curious but suggest support for his sensory overload. You can download my son’s PLOP if you need an example.

First you must establish goals. Typically goals will require some sort of baseline report showing a deficit. Most schools will offer to do an assessment. We have always shied away from this, as we feel that school personnel training is primarily geared toward educational deficits. Add to that the fact that they are not doctors, or at least not medical doctors and you can figure out why we have always tried to have evaluations and assessments done outside of the school system. Sometimes it has cost us extra money, as our insurance doesn’t cover everything. However, having documentation to back up your claims is often necessary to get the school system to do what is necessary for your child. The goals will be established at the table by the team. I mention it here because you will need to have any evaluations and assessments you want to share available for the IEP.

Goals will typically be centered around speech and language deficits, inabilities to function in the classroom or other issues specific to your child. Our IEP has 20 goals, and they range from simple language based goals to complex social goals. Try to have an idea going in of what goals you have for your child. Do you want him to speak appropriately at his current age? Do you want him to sit still in class for 30 minute increments without assistance? Do you want him to engage his peers in a typical fashion several times throughout the day? Goals are where you put that stuff into writing.

Let’s talk about supports. Asking for support is a very appropriate way to quantify your child’s needs. For example, saying “my son has autism” doesn’t mean anything to an IEP team. However, saying “My son needs support with his academics because he has difficulty understanding the teacher” gives the team a direction to go. I would actually recommend being even more specific. For example, our son has sensory needs, and when we asked for support we were very specific. His IEP reads “sensory breaks every 30-45 minutes.” The more specific you are the easier it will be to implement your child’s IEP, or, worst case, determine if it has not been implemented.

Common supports are:

Speech therapy
Occupational Therapy
Physical Therapy
Applied Behavioral Therapy
Assistive Technology

I have always felt that a kid with a speech delay needs speech therapy 5 days a week. We have 3 days of speech at the school and we had, until recently, 2 days of speech outside the school. Our son has sensory issues, so we do 1 day of OT in school and 2 outside of school. However, we also have OT consult time built in to his IEP so the OT can help make his environment more sensory friendly. We don’t do PT or ABA but know other families who do.

Assistive technology is tougher to get. Some kids who have severe language delays can qualify for an alphasmart, or other text based communication devices. Our son uses an FM device to help with his auditory processing delay. This is simply a pair of noise cancelling headphones plugged into a small receiver. His teacher wears the microphone, and it helps him isolate her voice from the rest of the background noise.

These are just some of the options available. Get out there and talk to other parents. Network and find out what is working for other kids, then incorporate what you think will work into your action plan. Next up: Sitting down at the table for the IEP.

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Take a minute today and vote. Tuesday, Nov 3 2009

Look, I don’t like to get on my soapbox (despite all evidence to the contrary!) but if you have a child with a disability you need to be heard. We with kids on the spectrum are reaping the benefits of those who came before us, paved the way and in many cases are still fighting for the rights of our kids. Help them by finding out about your local, state and national politicians and voting.

If you can help on a campaign or lobby for our kids, that is great. You can write letter too. Every little bit helps, because our kids will be forgotten if we don’t constantly remind those in power that they have rights too. However, our rights start with the vote. It is both our privilege and responsibility to vote, so do it!

At any rate, I’m not trying to get preachy. I just want to tell everyone that if we don’t put the right people in office to advocate for our kids they will be left out. Don’t let our kids get left behind. Vote.

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The Individual Education Plan or IEP part 1: The basics Monday, Nov 2 2009

Okay, let’s start with the basic elements of the Individual Education Plan or IEP. I’ll go over who needs one, why they need one, the legalities involved and some alternatives that are allowable by law but maybe not the best for your kid.

An IEP is a plan for your child’s education that will allow you and the school to make accomodations for your child’s special needs. The official legal definition is somewhat longer, but that is sufficient for what we are doing here. IEPs are governed by the Individuals with Disabilities Education Act, or IDEA 2004. 2004 is the most recent update to the act. You can search the act in full at the Wrightslaw law center. Also, if you are looking for a good legal guide of your rights and responsibilities, wrightslaw is the best advocacy resource out there for parents.

A quick note here: If your child is in a child find/early intervention program you will not have an IEP. You will have an IFSP, or Individual Family Services Plan. When you transition to your local school that will change to an IEP.

IEPs are put together by a team, which typically consists of the parents, the child’s teacher, a school system representative, the principal of the school, the child’s case manager and any specialists that may be involved in the child’s care. For example, our IEP meetings also have an autism specialist who works for the county, an occupational therapist and a speech therapist. Those services are critical to our sons education and as such we need their input when we plan his IEP.

IEP terms last a year, and by law must be renewed prior to then.The reason this is important is that the IEP is actually a contract, enforceable and actionable by law. As such, many schools are loathe to volunteer services because they know they have to provide them. This is where we as parents need to be experts. It helps if you can speak with other parents, do some research on the internet and consult with any specialists you see prior to attending an IEP meeting.

However, if you draft an IEP and are unhappy with it, as a member of the team you have the right to call another IEP meeting at any time. At the end of every meeting everyone on the team must sign off on the IEP. Again, if you are unhappy, you do not have to sign. You can also write “signed under protest” above your signature in order to show that you are not satisfied with the school’s solutions or supports for your child.

The key thing to take away from this article is that you are the expert on your child. Administrators and teachers always present themselves as experts on children, but nobody knows more about a child than his parents. Remember that and you will do just fine.

Next up: What will the school offer me?

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Biomedical and Supplements: Part 1 Sunday, Jun 7 2009

Okay, this is the first in a series of many articles on biomedical interventions. We credit a great deal of our success with Raymond’s increased functioning to our biomedical work. I had this grand idea that I would type up outlines and have some sort of cohesive master plan, but that is just not happening. Instead, I’m going to do most of this from memory.

The first thing we tried, and this was way before autism, was Transfer Factor. It is a 4Life product, and 4Life is a multilevel marketing company. Honestly, if I didn’t love the product so much I would never put up with the rah rah from the company as that sort of thing annoys me. At any rate, transfer factor is immune intelligence contained in a certain type of white blood cell. This immune intelligence is harvested from eggs and cow colostrum, so this is NOT a vegan product!  However, it works well for us, as when Raymond takes it he stays healthy and if he goes off of it he gets sick.

I found it interesting that in Dr. Bock’s book, Healing the New Childhood Epidemics, that he only found TF effective in about half of his patients.  I use it myself and it helps keep my allergies in check.  We use it in a liquid form as 4Life makes an antioxidant juice drink called Rio Vida which is much tastier than swallowing capsules.  It ain’t cheap, but its totally worth it for us.

The second thing we tried that really gave us a good burst of language was a probiotic.  For those who don’t know, probiotics are supplements of good bacteria that will help your intestine digest food and function more effectively.  You can get plant based, animal based or human based probiotics.  If you use plant or animal based probiotics you will need to swap them out every 2-3 months.  However, if you use an HMF, or Human Micro Flora, probiotic there is no need to switch them up.

Our first major experience with probiotics came a couple years back when Raymond became ill with a major rotavirus.  He was so sick he ended up in the hospital on an IV.  Naturally they slammed him with antibiotics, so our pediatrician had us take his probiotic intake from 1/4 tsp a day to a full tsp a day so we could reseed his gut with good bacteria.  (Antibiotics kill off gut bacteria FYI)  As soon as we did that we noticed increases in eye contact and language.  That’s when we knew he needed it.

The third thing we do religiously is cod liver oil.  We do 2 tsp per day, 1 tsp in the morning and one in the evening.  It really helps Raymond think and focus.  I notice on the days we miss it we have behavior issues and more temper tantrums.  Not that those are absent when he takes it, but it is better when he has it.

That’s all I’m going to do for now, as wordpress and firefox are fighting and I need to figure out why!

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Rock for Autism, or how I get motivated. Wednesday, Apr 8 2009

So I started thinking that different people are moved by different things. First off, my main motivation is to help my son, but sometimes I need “a little help from my friends.” My friends are songs that inspire me. Naturally my son is now a fan of some of these songs, so I’ll share a few with you.

Radio, Radio – Elvis Costello and the Attractions

I’m not a huge Elvis Costello fan, but this song really pushes me. It has a great beat and a good message. I find it telling that Raymond’s favorite line is “And the radio is in the hands of such a lot of fools trying to anesthetize the way that you feel.” He has trouble singing it, but he really loves it anyway!

Handlebars – Flobots

Okay, this is a newer addition, and I think Raymond only likes it because he is really into riding his bike right now, but it still helps get me going. A simple college alt-rock/rap anthem about power and ego. Good stuff.

One Toke Over The Line – Brewer & Shipley

I put this on a mix cd thinking Raymond might enjoy the vocal interplay and upbeat tempo. He didn’t cotton to it at first, but now he loves it. It really helps me smile and push on when things are tough.

Gnarls Barkley – Going On

Raymond likes a few Gnarls Barkley songs, but this is the one that really gets my blood pumping. “Connect the cause and effect, one foot in front of the next, this is the start of a journey.” Gets me every time.

Must Of Got Lost – J. Geils Band

Not sure why he loves this one so much, but he sure gets into it. I like it because it has a great vocal line and a driving beat. Perfect for in car listening, but I have to fast forward through Peter Wolf’s intro in the live version due to adult language.

Say Hey – Michael Franti & Spearhead

I can’t think of another song that gets me dancing in my seat like this one. Wonderful song, and you get to sing “I love you” a lot in it.

I’ll include one last song, but I will be coming back to this topic in the future. My wife has one song in particular that she dedicates to Raymond every time she hears it, and I think its pretty apropos so the lyrics are below. They’re worth a read.

When I Paint My Masterpiece – Bob Dylan

Oh, the streets of Rome are filled with rubble,
Ancient footprints are everywhere.
You can almost think that you’re seein’ double
On a cold, dark night on the Spanish Stairs.
Got to hurry on back to my hotel room,
Where I’ve got me a date with Botticelli’s niece.
She promised that she’d be right there with me
When I paint my masterpiece.

Oh, the hours I’ve spent inside the Coliseum,
Dodging lions and wastin’ time.
Oh, those mighty kings of the jungle, I could hardly stand to see ‘em,
Yes, it sure has been a long, hard climb.
Train wheels runnin’ through the back of my memory,
When I ran on the hilltop following a pack of wild geese.
Someday, everything is gonna be smooth like a rhapsody
When I paint my masterpiece.

Sailin’ ’round the world in a dirty gondola.
Oh, to be back in the land of Coca-Cola!

I left Rome and landed in Brussels,
On a plane ride so bumpy that I almost cried.
Clergymen in uniform and young girls pullin’ muscles,
Everyone was there to greet me when I stepped inside.
Newspapermen eating candy
Had to be held down by big police.
Someday, everything is gonna be diff’rent
When I paint my masterpiece.

Someday, everything is gonna be diff’rent…

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A day in the life of autism Sunday, Apr 5 2009

“What do you do all day?”

I get this question all the time, sometimes from my wife, but mostly from friends and family. I guess folks who don’t have a kid with special needs really don’t understand what we do. So, in hopes that I can direct people who ask me about my day here, I am going into detail about my day with Raymond.

We try to get up at 6am. If I get up at 6, I can do some exercise, eat my oatmeal and drink some tea prior to waking Raymond up at 7. My wife gets up around the same time and starts getting ready. Typically we will turn te tv on Noggin, and Raymond will wake up on his own. Perhaps not the best strategy for a kid who gets visually overstimulated, but it wakes him up while I shower, shave, etc. Also, it gives me time to measure his supplements and get him to take them. If we are doing vision therapy, we have to get that done too. Then I make his lunch while my wife helps Raymond get dressed. We get out the door around 8, and I drive Raymond to school.

School is a half hour away, so I get back home around 9. This is my chance to get stuff done. I blog, make my real estate calls, do research on properties or autism, pay some bills, schedule therapies, call the insurance company or any one of 30 other things that absolutely need my immediate attention. However, my workday goes on hiatus at noon, because I have to pick Raymond up from school at 12:30. So, after another half hour drive, I get to the school. There I talk with the teacher and her aide and ask about Raymond’s day, try to resove any issues, explain behavior they don’t understand and get a picture of how his education and social skills are progressing.

Then, depending on the day, we have either speech or OT. OT is at 2, so we grab a quick lunch out and head to OT. I will typically take Raymond’s supplement drink with me and he drinks it on the way. Speech is at 3, so we have time to go home and I make his supplement drink then. Then we head out to speech. OT days I drop Raymond off at his grandparents house at 3:30ish, and speech days its more like 4:30. Except Wednesdays, when Raymond has Therapeutic Riding, and we don’t get home until 5:30.

On the lucky days I get home between 3:30 and 4, I can actually get a little more work done. However, when I get home later than that, I have to start making dinner. I generally try to get Raymond’s vision therapy exercises done then too, and give him more supplements. Kelly gets home from work around 6:30 and we eat. Then we try to get some household stuff done, like laundry, take the trash out, etc. We also spend some time reading to Raymond, playing trains, games or whatever he wants to do. Some nights I work, either doing research for my real estate clients or doing data analysis as a subcontractor for my wife’s company. We watch a little TV generally starting around 9 and try to be in bed by 10.

That’s a perfect day. The rough days are when we wake up late and have to fit all that into a shorter time frame. Even better is when Raymond is uncooperative, so we are running late and have to figure out how to motivate him! Still, with our weekdays that full we must slow down a little on the weekends, right?

Wrong. Friday nights I either practice playing hand drums with a group called Bongo Buddhas or go to my Masonic Lodge meetings. Saturday mornings are devoted to either cranial sacral therapy with Raymond or counseling with our our therapist. Saturday afternoons are dedicated either to errands or showing homes to clients. We do get a break saturday night. Raymond’s grandparents are good enough to let him stay over once a week. This gives us a respite and lets us reconnect as a couple. Sundays are birthday parties, or day trips if we can find a fun place to go.

I’m not complaining. I love my life. I would be bored if I were less busy. However, I want people to understand that we do a lot for our son, but we also do a lot with him. I spend a great deal of time with Raymond, and it helps me stay connected to his needs. I think there is a perception among some folks that parents of kids with special needs are antisocial, or don’t want to be around, but the fact is that we are just super busy. Keep inviting us. Eventually we will show up, and I promise our company is worth the wait.

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World Autism Awareness Day Thursday, Apr 2 2009

Or World Autism Day, depending on who you ask. Today is a pretty good day to talk about all things related to autism, but the key is getting people to understand. I am committed to posting at least once a day on my blog during the month of April, which is National Autism Awareness Month, just to help educate and inform. So I think I’ll start today with the basics.

Autism Awareness Ribbon

What is autism? Well, according to the Diagnostic and Statistical Manual Volum IV (DSM-IV), you have autism if:

A. A total of six (or more) items from (1), (2), and (3), with at
least two from (1), and one each from (2) and (3)

(1) qualitative impairment in social interaction, as manifested by
at least two of the following:

a) marked impairments in the use of multiple nonverbal behaviors
such as eye-to-eye gaze, facial expression, body posture, and
gestures to regulate social interaction

b) failure to develop peer relationships appropriate to
developmental level

c) a lack of spontaneous seeking to share enjoyment, interests, or
achievements with other people, (e.g., by a lack of showing,
bringing, or pointing out objects of interest to other people)

d) lack of social or emotional reciprocity ( note: in the
description, it gives the following as examples: not actively
participating in simple social play or games, preferring solitary
activities, or involving others in activities only as tools or
“mechanical” aids )

(2) qualitative impairments in communication as manifested by at
least one of the following:

a) delay in, or total lack of, the development of spoken language
(not accompanied by an attempt to compensate through alternative
modes of communication such as gesture or mime)

b) in individuals with adequate speech, marked impairment in the
ability to initiate or sustain a conversation with others

c) stereotyped and repetitive use of language or idiosyncratic
language

d) lack of varied, spontaneous make-believe play or social
imitative play appropriate to developmental level

(3) restricted repetitive and stereotyped patterns of behavior,
interests and activities, as manifested by at least two of the
following:

a) encompassing preoccupation with one or more stereotyped and
restricted patterns of interest that is abnormal either in
intensity or focus

b) apparently inflexible adherence to specific, nonfunctional
routines or rituals

c) stereotyped and repetitive motor mannerisms (e.g hand or finger
flapping or twisting, or complex whole-body movements)

d) persistent preoccupation with parts of objects

B. Delays or abnormal functioning in at least one of the following
areas, with onset prior to age 3 years:

(1) social interaction

(2) language as used in social communication

(3) symbolic or imaginative play

C. The disturbance is not better accounted for by Rett’s Disorder
or Childhood Disintegrative Disorder

I understand that doesn’t really give you a definition, but may help you understand that autism is not a cut and dried diagnosis, like a sinus infection or even diabetes. The Autism Society of America defines autism as “a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a “spectrum disorder” that affects individuals differently and to varying degrees. There is no known single cause for autism, but increased awareness and funding can help families today.“

Awareness can help. Many people I have spoken with don’t really understand why awareness helps families with autism. Let me give you some examples from my life where awareness would have made life easier. First off, my son Raymond has High Functioning Autism. Much of the time he presents like a typical kid. However, when you begin to engage him you start to see his issues. One of his issues is auditory processing. He has acute hearing but has difficulty processing and making sense of sounds. Imagine how difficult simple things like shopping and riding in a car could be! Well, when I am in public and Raymond starts to melt down, I am typically very calm. I attempt to redirect him, offer him fidgets or whatever toys I have stuffed in my jacket pocket, but I keep on shopping or doing what I’m doing.
I can tell this frustrates some people. I get the looks. You know, the “why can’t you control your kid” looks that parents get from non-parents. I ignore them now, but when we were first discovering these things I actually had people come up to me and ask “what are you doing to that child.” Naturally I had some choice words for them, but on reflection I wish I could address them again and say the following:

“My son has autism, a severe developmental disorder. He has difficulty remaining calm in crowded or busy surroundings. Unfortunately, I still have to buy groceries and clothing or my family will walk around naked and starving. If this inconveniences you, I’m sorry, but understand it is only an inconvenience to you. It is much more than that to me. In the future, please try to be considerate of parents who are trying to handle their children. They might be going through something you cannot understand. Thank you.”

So awareness helps. Be kind, and understand that people who are not typical have the same rights to public places that you do. If you are not a tolerant person, give it a try. I promise you will get more than you give.

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April is Autism Awareness Month! Monday, Mar 30 2009

Okay, let me first say that I have never been a huge fan of dedicating “months” to something. My take has always been “If it is important, it is always important.” The first month dedication I remember is Black History Month, which is February for those folks who live under a rock. I remember thinking “This is kind of stupid. Shouldn’t we learn black history in history class, since it is, in fact, history?” What I didn’t realize then was that I was learning black history, but the month was designed to make me more aware of certain aspects that some teachers might not share.

Understand that I grew up in the south. Here in little old Spotsylvania they didn’t desegregate schools until a few years before I started kindergarten. Now I was in elementary school, so I didn’t really feel the tension, and by the time I was old enough to notice it had mostly gone away. I say mostly because there are always ignorant people who say stupid and hurtful things. The key is to help educate them about their ignorance.

So Black History Month was a big deal, because it helped get the facts to a generation in spite of the prejudices of previous generations. I didn’t really understand it at the time, but I realize now that many of my opinions and attitudes toward African American culture were changed by what I learned during those months. The great thing is that I wasn’t changed against my will. I chose to change because I was taught the truth.

So, in the spirit of truth and liberation, I welcome April as Autism Awareness month. I hope you can use this month to dispel some myths about autism, or figure out a way to understand it a little better. The most important thing that I can say about autism is this: My child has autism, but autism doesn’t have him. He is more than his disorder.

On a final note, April is also Fair Housing month. This resonates with me for a number of reasons, not least because there is a good chance my son may be discriminated against due to his disorder. Remember that there are laws to protect those who cannot protect themselves. Put them to use and educate those who think they can take advantage of the less fortunate.

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The Organic Acid Test, Yeast, and the end of the Feingold Diet. Tuesday, Mar 17 2009

Yeast!

Well, we got the results of our Organic Acid Test back a couple weeks ago, and have made some decisions based on the results. For those folks who don’t know, the Organic Acid Test is a urine test performed by a lab. We used Great Plains Labaratory, and they are great. The test gives you a “metabolic ’snapshot’ based on those products the body discarded during urination” according to their website. This snapshot gave us our first inkling that Feingold was not the right diet for us.

A few words about Feingold. I have been resistant to the stricter diets because I thought there was no way we could handle the additional stress and preparation. I was totally wrong. Once we decided to do it, it became possible. I won’t say it was easy, but it is manageable. That being said, Feingold is a good diet and works for many kids. We did see improvement, and I attribute a great deal of that to getting the crap out of Raymond’s diet. Without artificial preservatives and dyes, Raymond’s metabolism started getting back on track. However, it did not solve as many issues as we had hoped, so we were still searching.

So, we sent Raymond’s urine to Great Plains, and they sent us back a comprehensive report. Oh, and our insurance company did pay a good portion of this, so it was not as expensive as some tests. At any rate, the report shows that Raymond has increased 3-oxoglutaric acid, which indicates a possible yeast overgrowth. We knew he had yeast, but didn’t realize it was quite so high. Also, a number of the other test results were consistent with leaky gut and issues with oxalates.

So what are oxalates? Naturally occurring substances in foods, similar to salicylates. Vegetables produce them naturally, and they are present in a large number of foods. Some of the indicators that clued us in were high levels of oxalic acid and low ascorbic acid. Low ascorbic acid means you should supplement with vitamin C, right?

Wrong. The way Raymond’s gut is functioning, vitamin C supplements would aggravate the problem. He can’t absorb them, and the oxalate issue will be aggravated by supplementing with C. Other factors in his metabolism show low levels of pantothenic acid, or B-6, and elevated kynurenic acid, which requires B-6 for metabolism. However, we had him tested for B vitamins several months ago and found out he cannot metabolize them properly, so supplementation is not going to fix the problem.

Quite the impasse. Kelly and I have spent the last couple weeks wrangling with it and doing more research. Our pediatrician has been unavailable due to some unfortunate family matters, which has left us to our own devices. We watched his behavior get more “yeasty” and decided to do a yeast detoxification ourselves. We typically treat for yeast with homeopathics, but they were working too well. By that I mean that yeast was pouring out of Raymond, so badly that his skin was cracking open. That is just not sanitary. We almost kept him home from school some days because the tops of his hands were red and cracked open. We put aside the homeopathics and went for a more direct method of yeast killing.

Our choices were limited, especially since Raymond cannot tolerate any prescription antifungals, so we decided to use oil of oregano. Oil of oregano is a powerful antifungal and high in antioxidants. We have used it before with major success but also negative side effects, which I have determined to be my fault. The last time we used oregano oil, we started off with 1 drop per day. However, as it started killing off yeast, I kept increasing the dose. It got up to 2 drops twice a day. We did kill off a ton of yeast, and Raymond even passed what we believe to be a nest of parasites. It was a large clump of what looked like eggs, and it totally freaked his grandmother out. However, the down side is that Raymond began vomiting uncontrollably, and his vomit smelled like sour beer. It was the nastiest, yeastiest smell I have ever encountered. So, we stopped the oil and his behavior and attention improved dramatically. We know it works, but we have to take it slow.

First off, we made sure he was getting his probiotic regularly. That is key when killing yeast. If you don’t replace the yeast with good gut bacteria it will come right back. We gave the increased probiotic a few days to start working, and then we started his Vege Greens. Once you kill yeast, the body has to bind it with something to pass it. We used activated charcoal in the past, but upon further research we discovered we could use concentrated green veggies to bind and remove the die off. Naturally we went back to our old pal Vege Greens, as it has a ton of other benefits. In fact, I’ve posted the label below so you can see what’s in there.

Vege Greens Label

Finally, after a few days of reintroducing Vege Greens and checking for changes, we added the oregano oil. Just one drop every other day. It is pretty strong stuff, so I put it on half a bagel and then cover it with smart balance spread, and Raymond eats it no problem. Then, 45-60 minutes later I give him his Vege Greens. We have been on it for 5 days now, and die off started one day after the first dose. However, it is much gentler this time. We are not getting the crazy runny stools or vomiting, so I think we are handling it well. We may up it to one drop once a day after a couple weeks if he tolerates this, but only if we have no other die off issues.

Also, we are looking into the low oxalate diet, but I’ll have to write about that some other time. We think that might address a wide spectrum of issues, so we are definitely going to try it. We want to be prepared, however, like we were with Feingold, so we are still reading and researching. Hopefully by the weekend we will be ready to roll with it.

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Diagnosis: Our first visit to Georgetown Tuesday, Mar 10 2009

Our first visit to The Georgetown University Hospital’s Autism and Communication Disorders Clinic did not happen overnight, so I’ll start at the point when we began looking for a place to take Raymond for a diagnosis. Shortly after Raymond’s third birthday, my wife and I were 99% certain that Raymond had autism. We were so certain that we sat down with our pediatrician and asked her where we should take Raymond. She suggested several places, like Kluge at Charlottesville, MCV in Richmond and Georgetown. My wife put it best when she asked our pediatrician “If you had a child, where would you take him?” Our pediatrician answered without hesitation “Georgetown. I’ll write you a referral.”

However, like all good things, we had to wait. We found out they wouldn’t have any openings until the spring, so decided to try a different route. In February we went to see Dr. Mary Megson in Richmond, a DAN! doctor and wonderful woman, who I will be writing about in greater detail in a later blog post. She gave us a diagnosis of infantile autism. We were relieved! Now we could get our insurance company to pay for needed services, like speech and OT. Unfortunately that was not the case.

So, we called Georgetown again. They were booking appointments then, so we got 2 appointments in late May and one in early June. Let me explain why it takes 3 appointments so folks don’t think they are trying to get extra copayments out of their patients. The fact is that the Autism and Communication Disorders Clinic uses a multidisciplinary approach, so Raymond would go through 4 seperate evaluations. The team consists of:

Dr. Stephen Mott, developmental cognitive neurologist and chief of the division of child neurology
Dr. Diane Jacobstein, clinical psychologist with decades of experience
Rita Solórzano, speech language pathologist
M. Janet Thomas, occupational therapist.

During the first two appointments, the team evaluated Raymond. First up was Doctor Mott, who did a wonderful job asking questions and discovering more about the physical side of Raymond’s disorder. Next up was Rita, who managed to elicit some response although by that time of the day Raymond was not in the mood to sit still. Our second appointment started with Dr. Jacobstein, who did a wonderful job engaging Raymond. We finished with Janet, who did the best she could evaluating Raymond in spite of the fact that he was not cooperative.

Let me backtrack for a minute. When we first met the team, we laid it out pretty clearly that we thought our son had autism. My wife said “Don’t send us home with a diagnosis of PDD-NOS, because that doesn’t help us.” We knew this from fighting with our insurance company. PDD-NOS, or Pervasive Developmental Disorder, Not Otherwise Specified, had the potential to be denied by our insurance company. Our insurer, Guardian, who will be prominently featured in a later post, specifically excluded any sort of therapy for a developmental delay or disorder.

So, the third visit to Georgetown was for our diagnosis and recommendations. We were all seated in a conference room, and we were given our report. It was pretty large and indepth, clocking in at 23 pages. Although we knew in our hearts that Raymond had autism, that didn’t make it much easier hearing it said and seeing it in print. However, the team was very tactful and sensitive in the delivery of the news, which did help a great deal. All told, Raymond was diagnosed with 5 challenges. Autism, Dyspraxia, Hypotonia, Hyperlexia and Transient Alterations of Awareness.

The Autism diagnosis is familiar to most folks, but I do want to mention one thing. Raymond was diagnosed with autism despite the fact that he did not have many of the behaviors commonly associated with autism. However, Dr. Mott was very clear and specific when delivering the diagnosis. Per the DSM-IV, atypical autism is still diagnosed as autism, not PDD-NOS. PDD-NOS is specifically reserved for children who did not meet the criteria for autism, not kids who were atypical but still met the criteria. Dyspraxia, sometimes labeled Apraxia, is a motor planning and sequencing disorder. That was really the silver bullet we needed for our insurance company to start paying for OT. Hypotonia is low muscle tone, and is common in special needs world. Hyperlexia could be either a boon or a curse, as it means that Raymond could read before age 3. If he could decode the words and understand them, it was a boon. If not, it could be indicative of other issues. Finally, transient alterations of awareness related to Raymond’s tendency to stare off into space. There was a real concern that Raymond might be having “absentee seizures.” I’m pretty sure they aren’t called that any more, but I can’t quite remember what they are called. At any rate, that meant we had to do a 24 hour EGG with Raymond to see if he was seizing. I’ll go into details about that later.

The best was yet to come. The 23 page report contained a thorough evaluation of Raymond, but it also contained 6 and a half pages of recommendations! We were really blown away by the thoroughness of the teams’ suggestions. I’ve excerpted some of them below.

7. Raymond should continue with speech and language and expressive skills and pragmatic language skills and his oral communication intervention to maximize motor issues need further exploration and appropriate intelligibility his speech intelligibility.

8. Raymond will benefit from having a strong home component as part of his therapeutic approach. The links between the classroom, therapy sessions and his parents at home is critical for carryover of skills from one environment to another.

9. Model two and three word phrases for Raymond to help him understand how to combine words into novel combinations. At present,he is using single words and rote sentences or phrases but does not appear to be using phrasesthat he has constructed himself. Use combinationssuch as: object-action (monkeywalk), action-object(Fly plane), object preposition(ball in), object-function word (cookie,yes), action-pragmatic marker(open please), etc. Also, listen to two word combination that he produces and add an element such as descriptive concept (fly big plane) or noun (ball in bag).

That is just 3 of 20 recommendations we received, and all of them were of that caliber. We credit major parts of our action plan with Raymond to the help we received from Georgetown. Not just that, the report gave us the justification to begin speech therapy, physical therapy and occupational therapy, all of which have helped Raymond grow and thrive. In fact, he met his PT goals after just 14 weeks, and has since been released.

I guess what really struck me about the team at Georgetown is their willingness to help our son. We have seen many therapists and doctors, but the ones who exemplify their profession best are those who go the extra mile for their patients. I’m happy to say that the staff at the GUH Autism and Communication Disorders clinic are among the best professionals I’ve met in my life. If you have a kid on the autism spectrum, these are the people that will help you help your child.

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