Yes, I did it...

.....I took Alex to a DAN! doctor (holds arms over head and ducks).

What is a DAN! doctor? Basically, a doctor who believes autism has a biological cause and can be treated biomedically - with special diets (usually the GF/CF diet), supplements, detoxification, and sometimes even chelation. This is the protocol endorsed by Jenny McCarthy. More info can be found here.

However, I didn't just go to "any" DAN! doctor. (And there are many questionable ones out there; some aren't even real doctors - they are nutritionists, chiropractors, etc.) I went to a developmental pediatrician who went to a real medical school (and a good one at that). She is familiar with autism from her background apart from the DAN! protocol. I had to wait 9 months for the appointment. I was impressed with her answers to my questions and by the questions she asked ME. I am a nurse and told her point blank I was skeptical of the "whole DAN! thing". She said she appreciated that and told me she had once been skeptical of it too and that there are some parts she is still skeptical about. She told me to "have an open mind mind but not so open your brain falls out." Perfect way to put it as far as I am concerened!

I have generally followed sites like this and this because the fact that autism can be treated or even reversed using special diets and supplements is just crazy, right?? I did decide to try the GF/CF diet with Alex last year and honestly didn't see much difference after 9 months. He seemed less out of it but the changes were not worth all the effort this diet requires. So I took him off it and he immediately started drinking tons of milk, specifically Carnation Instant Breakfast. My son turned into a zombie, I am not kidding. I couldn't get his attention, couldn't "reach" him unless I was yelling or tapping him. I took him off just casein (dairy) and he has been more alert ever since. And funny thing...his frequent diarrhea stopped. So we have been casein-free for about a year now. Did it "cure" him? No, but he is more alert and less apt to be in the bathroom with diarrhea and those are GOOD things even if it was achieved in a "wacky" way. I will take it! So, I thought, what if there IS something to this DAN! bullshit?? What if I went to a REAL doctor, a doctor who specializes in pediatrics who just so happens to practice this protocol? What could it hurt other than my wallet? (And God knows we have spent plenty on more conventional therapies like speech, OT, and RDI). I decided to make an appointment figuring I could always cancel it (and sort of assuming I would). Then I read this post by Goodfountain, a blog I have followed for some time. I admire her positive, yet realistic (and often funny) way of describing living with a child on the spectrum and her daughter seems a lot like Alex. Her point that there can be a "Middle Ground" hit home with me immediately. Because that's where I am. I will never consider chelating (in my opinion, that's some crazy shit) and my kids are fully vaccinated although I do forgo any vaccine with Thimerisol and most "optional" vaccines. However, I am willing to keep an open mind with some of this "stuff". Why not? It just may help. And it's not like ANYONE has all the answers, quite the opposite. It is becoming more and more apparent, in fact, that autism, like cancer, may manifest due to many factors. Who's to say nutritional deficiencies and/or difficulties with detoxification have no part in it? Kind of like 2 people who smoke for 30 years - one gets lung cancer at age 40 and one lives to be 90. Every BODY is different.

She did examine Alex in pretty much the same way all the other doctors have examined him but asked me additional questions about diet, rashes, GI symptoms, etc. We talked a while about Alex's propensity to lick metal things like bleachers, railings, etc and the fact that he has swallowed 3 coins. When I went back for the follow-up appointment, she told me she doesn't think Alex has autism or is even on the spectrum. She said she sees him sitting right at the edge of it (could I have picked a better title for my blog!!???) However, if he were to fall off the "fence", she feels he would fall off on the non-autistic side (meaning he does not have HFA, Asperger's or PDD-NOS).

She sees autistic-like symptoms but said he has too many strengths that kids on the spectrum simply do not have. Some examples were appropriate eye contact (although his is diminished, it was very socially appropriate), joint attention ("hey look at this!" said WITH eye contact), ability to transition with no difficulty, good pretend play skills (although generally diminished, he did play really well in her office and showed he is CAPABLE of good pretend play), took part in back and forth communication, displayed a sense of humor - basically she was thrilled to see he made appropriate 6-year-old boy jokes about "poop". She did see a lot of problems with language but felt the problems were not typical of autism, but rather another problem like an expressive language disorder. She saw a lot of sensory seeking and movement, decreased attention, etc.

Other doctors have told me this. The difference is they all diagnosed him with ADHD, which never seemed to fit. And I know many kids on the spectrum are first diagnosed with ADHD. This doctor said she doesn't think it is ADHD (I certainly don't). She thinks he has "significant" sensory processing disorder (sensory seeking), visual processing problems and an expressive/receptive language disorder. She admitted she has never seen a child with his language pattern/difficulty before. If you met Alex, you would notice immediately that his language is just "wrong". You are often left wondering "WHAT??!!" She told me his odd body movements are not true stimming, but are instead sensory seeking movement. I'm not sure of the difference, but whatever. She also noted his nasal stuffiness, dark circles under his eyes, and watery eyes, which quite frankly, he pretty much always has, not just during allergy season. I'm so used to it, I barely notice it anymore. Now I am wondering how I could be so blind!

So...got blood drawn this AM and need to send in some urine. From there, we decide on "treatment". I will never consider chelation, will always vaccinate, will not load him up with a million pills and supplements, but WILL keep an open mind and try what she suggests. I am a "middle-ground" mom.

Notes from DisneyWorld

Just got back from a weeklong trip to Disney World. We have been there several times, although Alex's meltdowns last time (before we really knew anything was "wrong" with him) had me doubting we would ever return.

They do a fantastic job with special needs, by the way. Alex is off milk; we did a trial of the GF/CF diet last year and noticed a difference with casein. At each meal the Chef came out and discussed what he could eat and even made some meals in a different way so he could eat them. They have Toffuti at every restraurant. I know they also have special passes for special needs kids to avoid long lines. Alex is not that severely affected and does not have trouble waiting in lines so we didn't pursue this. However, I have heard they do a really great job in that area.

My only complaint about Disney is some of the other "guests" (Disney's word for customers/visitors). My two youngest (Alex and Sarah) had a few difficult moments (AKA meltdowns). Alex for obvious reasons and Sarah for less obvious reasons although she definitely has some behavior issues that I think are related to her adoption or in this case the hunger she must have experienced in the orphanage. She is very concerned about where her next meal is coming from and gets positively frantic if she feels food is unavailable. Hence, she had a gigantic meltdown on the bus one day when she was hungry and I had no food. I mean, enormous. Screaming she hated me, hitting me, etc. Of course there were numerous gawkers on the bus who just couldn't refrain from staring and whispering behind their hands (like I don't know what they are saying). Looks of utter disgust and out and out staring apparently are completely appropriate. Alex got the same stares/whispers/disapproving glares when he had a meltdown after a long day in the park. (Alex did very well overall - he behaved pretty much typically for most of the trip, I am happy to say, except for a few incidents).

Here's my plea - don't stare or whisper when you see a child having a meltdown. And teach your kids not to stare, point, etc. Meltdowns look like tantrums but are different. You may not be able to tell the difference, but give the kid the benefit of the doubt if you see a child "tantruming". Tantrums are a way for a kid to get his way, a battle of wills. Meltdowns are the result of too much stimulation, or if the child is put into a position he/she is not equipped to deal with. Autism spectrum disorders, sensory processing disorder, ADHD, and adoption-related issues are not visible, but are just as real as cerebral palsy, Down's Syndrome or a broken leg. And it hurts just as much to have people gawking at your kid for something they really can't help. For the record, I am not perfect with this either. I sometimes get super-angry at my kids even when I know they are incapable of controlling themselves and I definitely get embarrassed. And sometimes I look at a kid I don't know and think "what a brat" But then I try to give them the benefit of the doubt. Because you just never know what the whole story may be. I would love to tell these parents with their "perfect" kids that I, too, could pat myself on the back and congratulate myself on how well-behaved my kids are if my kids were all typically-developing kids. My older two kids sometimes get embarrassed by the meltdowns and I don't blame them. But I hope they are also learning not to stare, point, whisper, or judge.

Some views on adoption

Adoption is something that I have really come to change my mind about as I have become more informed and have come to know my daughter's story. Over the years I have been asked many questions about my daughter's adoption, both online and in real life.

1. Why did you adopt?

Obviously, it was not due to infertility and there isn't one answer, but rather several reasons. One is that I grew up in a small family, with little extended family around. I always envied my friends who had big family get-togethers and holiday meals with cousins, aunts, uncles, etc. I have a wonderful family which may be why I always wished there were more of us! I wanted a large family. I figured there were kids who needed a family, lots of them. Adopting was always something I had in the back of my mind that I would like to do. After having 3 boys, I really liked the idea of adopting a girl. I first became interested in adopting from Russia after watching a Dateline show about the plight of a little girl in an orphanage in Russia and how many kids were in the same situation. From there I did research on Russian adoption and saw there were indeed many children in orphanages in Russia. I was interested in adopting a preschool age child but our agency would not allow us to adopt out of birth order and Alex was only 2. So we brought Sara home when she was 1.5.

2. Why did you adopt internationally? Why not adopt domestically or from foster care?

I had no desire to adopt a domestic newborn baby. I wanted to adopt a child from an orphanage or foster care. However, I was leary of foster care because of the kids eventually leaving. The goal of foster care is return children to their natural family when possible. That is as it should be and I am all for it. However, I was afraid having kids coming and going would be too disruptive to my kids. My first priority had to be them. (Note: My hesitancy with adopting from foster care was based on the experiences of a friend of mine who had kids coming and going even though she was hoping to adopt. If I had to do it again, I would probably look a little closer at this option.)

3. Why was your daughter relinquished?

While I have shared my daughter's story with close family and a few people online who don't know us in adoption discussions, this is HER story and I don't generally share it with others. Let's just say her mother really did not have much of a choice. When your options are survival or possible non-survival, you do what you have to do. The idea that natural mothers always have a choice is false. My daughter's mother didn't really have a true choice and that is the case far more often than most people would like to think.

4. How do you know for sure why your daughter was relinquished? How do you know she was not kidnapped?

We hired a searcher who made face to face contact with my daughter's Russian family. Her mother verified and expanded upon the sketchy information we were given by the adoption agency. We have pictures and video tape of my daughter's family as well as her story as told by her mother (translated, of course, by the searcher).

5. Will you take your daughter back to Russia?

Yes, this is something we plan to do. We can't do it right now and although I know some people don't agree with this, it is our decision when it is the right time to go back to Russia. For better or worse, we have 3 other children and limited resources.

6. Did you know about your son's difficulties when you adopted?

NO! This question has been asked of me by people both IRL and online. I'll be honest, it kind of irks me. I'm not even sure I can articulate why. It feels invasive for some reason. But again, the answer is no. In fact, during our homestudy, the social worker needed to have the pediatrician make a statement on the boys' health and development. There were no huge red flags. Those of you with kids on the spectrum know the difficulties are not always obvious in infancy or even the toddler years. In fact, a recent study done by IAN (Interactive Autism Network affiliated with Kennedy Krieger) found that the average age of diagnosis for PDD-NOS is 3.7 and for Asperger's Syndrome is 7.2. At age 2 we knew that Alex wasn't yet talking, but we weren't overly concerned because our oldest son was a "late talker". Obviously, the fact that we were clueless when Alex was 2 is not unusual.

7. Would you recommend adoption to others?

When we adopted I was unaware of some of the things I know now. I honestly thought we were doing a good thing by adopting a child who was in an orphanage. I also erroneously thought my daughter would not "miss" her family since she had never lived with them. I always assumed she would be curious and want to find them someday but I didn't think she would feel "incomplete" or like she didn't fit in. Of course she is only 5 so I don't really know what her feelings about her adoption will be but I am aware they may be more negative than positive. She is likely to feel a great sense of loss for her family, her culture, her language, etc. This has nothing to do with us "giving her enough love". It would really have nothing to do with us. It is what it is. We cannot replace her original family no matter how good she has it with us. This is what prospective adoptive parents need to understand and it is something I didn't understand before adopting. Now I am not saying she would be better off in an orphanage, I don't believe that. However, there are many loss issues to consider. Adoption, of course, begins with loss. Without the loss of her original family, her adoption would not have taken place. She will need us to be supportive of her feelings, whatever they may be, and to acknowledge them. So...I would say to others thinking of adoption, please do some research. Read "The Primal Wound" by Nancy Verrier. Read some blogs by adoptees and first moms. It can truly be eye-opening. There is a definite negative side to adoption that the agencies will not tell you about.

8. How has your daughter "adjusted"?

For the most part, very well. She has some lingering issues. She is a food hoarder which is not uncommon in post-institutionalized children. She is also hyper-vigilant. This is also common. I have to be extra careful that I am never late picking her up from school and other places and that if I say I am going to be somewhere, that I am there! This is more important for her than for my other kids. Aside from that, she is also a bit delayed academically. I don't know the cause of this except to say that there is nothing "wrong" with her cognitively. She is bright and curious.

9. If you had to do it all over, would you adopt again?

Hmmm....that is a toughie. Knowing what I know now about Alex, probably not. But that is really the same thing as saying, if you knew the challenges Alex would have, would you have had any more kids? The fact is, I can't change the fact that we adopted and can't imagine my life without Sara any more than I can imagine my life without one of the boys. I feel guilt a lot - guilt that I participated in something that may one day cause her real pain (her adoption). And also that I participated in the "industry" of adoption. Because I have come to believe that the industry is corrupt. As long as there is demand for children, agencies will find children, one way or another. And charge high fees for their "services". I think profit should be taken out of adoption altogther. I think more effort should be put into keeping children with their families whenever possible. I also feel guilt similar to what I imagine a family feels when their loved one has received an organ from someone who has died. I imagine they feel tremendous joy for their loved one but a kind of guilt that their good fortune had to come from another family's terrible loss. I know my joy at having my daughter has come from a terrible loss suffered by her Russian family. It was easy for this loss to be kind of vague before we searched for her family. However, the tears in her mother's eyes and the sadness on her face were very real. I know that as the adoptive family, we have all the joy while my daughter and her Russian family experience great loss. That is hard for me to think about. I DON'T KNOW if I would have adopted if I knew then what I know now (even if Alex was NT). I need to take responsibility for our decsion to adopt and find a way to help change the industry for the better.

IEP Success

Alex has met ALL his IEP goals before the school year is over. According to his special ed teacher, he is able to stay on task, sit up appropriately at his table (without slumping or fidgeting), complete his work, retell a story, and have on-topic communication with peers and adults with at least 3 back and forth exchanges. In other words, he is doing great!

When I am in his classroom volunteering, which I do once a month, I see him having good days and bad days. On good days, I have gotten to watch him play appropriately with 2 girls at the play kitchen, talk with his table-mates at snack time, contribute appropriately to classroom discussions, and join in with other kids' play durning free time.

Bad days - I have seen him isolate himself by "hiding" behind the giant whiteboard and look at a book while all the other kids are playing together, not be able to keep up with multiple instructions during art projects, stare out the window and at the calendar, and fail to greet peers in line in the morning. The thing I notice most about him that is "different" is that he takes a lot of interest in his surroundings, but not as much in the the other kids as is normal. He seems constantly distracted by "things". First thing in the morning, he goes through his routine, walks around and looks at everything, but doesn't seem all that interested in the other kids. He will respond appropriately if someone speaks to him, but he doesn't usually initiate conversation. He sometimes seems out of it.

He is making progress - he is doing well academically, he loves school, his behavior is good, his teachers really like him. However, he still has some work to do!

Kindergarten is only 3 hours and we do a lot of sensory input in the AM before he goes: OT, gymnastics, therapeutic listening, swinging, trampoline, jump rope, etc. I don't know how he will do next year when he is there all day. I think he will need sensory breaks.

But back to the good news!! He met all his goals!! He only has one goal for the rest of the year. It is that he will stay on task and complete work, with no reminders, 9 out of 10 times. That, to me, sounds like what any "normal" kid would be expected to accomplish. We will be adding social goals regarding lunch and recess next year when it is relevant. My fear is he will spend recess by himself getting his sensory input. I need to ensure they are providing that so he can play with the other kids at recess. I am also a little concerned with the smells in the cafeteria. It can be a little overwhelming to my nose at times and he has no tolerance for smells. I don't know how or even if they can address that in an IEP but it is definitely going to make socializing at lunchtime a challenge if he is gagging and dry heaving. I hope his class sits at the table furthest from the food...

Autism Acceptance

There is a lot out there on the subject of "autism acceptance". There is even something called the Autism Acceptance Project. And NPR did this story on autism acceptance. I think these types of sites and initiatives are great. I am all for autism acceptance, although maybe not in the way some people mean. What does autism acceptance mean? That is the tricky question.


When I first heard the term, I thought it referred to accepting the fact that your child (or you) have autism or are on the autism spectrum. There are certainly a lot of people in denial, as is common with potentially devastating information. It is a form of self-preservation. For me, personally, this has been quite tricky since Alex is one of those kids who gets a different diagnosis every time we go somewhere for an opinion or evaluation. He has had 3 formal evals by qualified professionals. One diagnosed high functioning autism (possibly Asperger's), one diagnosed ADHD with possible Sensory Processing Disorder (confirmed by an OT) and one diagnosed ADHD with Expressive Language Disorder and sensory seeking behaviors noted. So...clearly "something" going on but not so clear exactly "what". So....I don't want to go around saying my child is autistic if he is not but I also recognize he has many "spectrummy" qualities - he is on the edge of the spectrum somewhere, no doubt. I accept that and even go so far to say he is "on the spectrum" because I think he is. Autism acceptance, right?





Actually, autism acceptance usually refers to accepting autism as a "difference", often referred to as "neurodiversity". Many people think autism (especially Asperger's) should not be thought of as a disorder. Temple Grandin, a prominent person with autism has said she thinks autism is a gift. She thinks she would not have accomplished what she has without it. She is very likely right. I think she is incredible and I'm glad young people with ASDs have her to look up to. No doubt she has postively influenced many parents and children affected by autism spectrum disorders. However, I just don't know how I feel about autism being a gift. I am glad she feels that way and she may even be right. I will admit I wish my son didn't have this "gift". It is one I wish we could return.



What does autism acceptance mean to me? To me, personally, it means accepting my son's limitations and gifts, the same as I would with my 3 NT children. We all have our strengths and weaknesses. One of my most important jobs as a mother is to nurture their gifts and strengths, help them develop areas that need work, and accept that they are not perfect. So, while I accept that Alex has limitations that my other kids don't have, I also believe that some of these limitations are due to a DISORDER. Because I do believe that autism, Asperger's, etc are disorders. Hence the term autism spectrum DISORDER. I don't think it is merely a different way of thinking or being. I really believe there is something "wrong". And if I had the opportunity to take it away, I would. I think Alex would still be Alex without the ASD. I don't think it defines who he is. I respect parents who claim they would not change a thing and believe that the ASD makes their child who they are. It is valid point of view. I just am not there. If I could take away my son's difficulties with making friends, complex motor skills, language, and sensory integration, believe me I would in a second. Because I think life is going to be harder for him than it is for my other kids - heck, it already is. Who wants that for their kid? Who wants to watch their kid struggle? My son is a very happy boy. I hope and pray that he continues to be.



Parents of children with other disorders don't go around talking about acceptance. As far as I know there isn't discussion of acceptance of other disorders as simply a variation of normal. Why is it the case with autism? I know most of the discussion centers around high functioning individuals and not children who are severely affected, but even mildly affected kids can have serious problems functioning in the world. And most kids with ASD are mildly/moderately affected. The reason these discussions bother me is if HFA/Asperger's are accepted as variations of normal, there is no incentive for research into a cure or REAL treatment for autism. And this research is woefully underfunded now.



Then, of course, there is the other end of the spectrum (pun intended) - those parents who literally risk their children's life trying to "cure" autism. I will leave that discussion for another post.

New Blog

I've started a new blog (obviously). This one will be anonymous and comments monitored. It's a shame I have to do this, but I learned my lesson!! As you can see from the title, this one will be much like the last, focusing on my son who has an alphabet soup of diagnoses. One of my biggest frustrations is the fact that we have NO clear-cut diagnosis, but as I read other blogs and forums, I realize my son is not the only one who does not "fit" neatly into any diagnostic box. The diagnoses he has been given, by different evaluators and therapists are as follows: ADHD, "possible" Asperger's, HFA, PDD-NOS, Sensory Processing Disorder, dyspraxia, Expressive Language Disorder, and "possible" dyslexia. Of course he doesn't have ALL of these, but he does have symptoms of all of them. The problem is so many symptoms overlap it is hard to weed out what the core problem is. Some days I think it doesn't matter, as long as I am treating the symptoms. Other days, I think it does because I wonder if we should be pursuing a more targeted treatment plan. Right now my son receives OT and Speech Therapy, and that's it. He has an IEP at school that focuses on communication and paying attention/staying on task/completing work. We follow a sensory diet at home which includes lots of jumping, brushing, and Therapeutic Listening. I have come to believe most of my son's issues are sensory in nature - he is both sensory seeking and dyspraxic. Therefore, for now, most of our interventions focus on sensory integration.

For the record, I have 4 children. My oldest is Ben (for the purposes of this blog anyway since names are now anonymous). He is 11 and has ADHD but no other diagnoses and has managed fairly well. He is very creative and intelligent. He likes music (guitar specifically) and sports (football specifically). He is hilarious and sarcastic - love that!!!!
Next is Isaac who is 10. He is completely NT, a great athlete and a "leader". He is my "easy" kid.
Next is Alex, he of the many diagnoses. He is 6. He is exceptionally sweet (don't believe for one second that kids on the spectrum do not show or express love. This boy tells me he loves me and gives me kisses every day, several times a day.) He is a smart kid who has a lot of trouble expressing himself, getting himself "together" and entertaining himself constructively. I love him the way he is more than life itself but that doesn't mean I wouldn't take away his problems if I could.
And last but certainly not least is Sara, age 5. She is also very sweet and loving. She is outgoing and friendly and always a bright spot in my day. She is adopted from Russia and there will be some blogging about adoption here as well. She is smart as a whip but struggles with language-based academics.

I have followed many blogs for quite a while, both about the autism spectrum/SPD and adoption. I have learned a LOT from them. I want to put my thoughts and ideas down for myself mostly but also for others to read if they are so inclined. Cheers!