Category Archives: undiagnosed

Paging Dr. House!

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Recently I took Boo for a follow-up with neurology. The best part of the visit was when Boo hit the ALARM button in the hospital elevator. In a crowded hospital elevator. The day would have to get better, yes? We were only going for a routine follow-up.

Maybe with other children. But nothing with Boo is as easy as it appears.


I adore her neurologist. I trust her more than any other physician Boo sees. We had a long talk about the autism diagnosis and what it means for Boo. She asked about Boo’s chronic low blood pressure and is surprised that no one is too concerned about it. She asked about Boo’s chronic color changes and again showed surprise that no one is too concerned. That although her Raynaud’s is manageable it is odd that it presents so young and without any rhyme or reason.

I told her about Boo’s newest development: intermittent swelling. That her wrists and hands would swell for no reason. I had taken her to the general pediatrician but by the time I had made it his office she was no longer swelling. As the neuro examined Boo she agreed that one of her hands appeared swollen and asked about her legs. Um…she is always in jeans and sneakers. Honestly (my bad) I never checked. I did say that her legs do get “tight” but we have been stretching them.

Disrobing Boo her neuro said: She isn’t tight she is swollen. Very swollen. But it doesn’t seem to bother her. (That should be Boo’s theme song)

So a parent would think okay what do we do about this?

Her response: call some one else. Okay, not really. But she told me to follow-up with two of Boo’s other specialists. That this wasn’t really her field.

Deep breath. I called Boo’s rheumatologist and was told it (based on a phone conversation) that this swelling does not appear to be rheumatological (is that a word? If not I just made it up like undiagnosed) in nature to “give it a couple of weeks” and then go back to our general pediatrician.

I called Boo’s cardiologist and left a message. No return call yet, they must not think it is anything to be concerned about.

But I am. And I am frustrated. How can one little girl have so many abnormalities. Isn’t one enough? Does she really need 15? I’m thinking she is getting greedy. 

So here is what I am looking for Dr. House. I am looking for someone with a medical degree to give a crap. I want them to look over Boo’s entire history. I want her examined from head to toe and not say they don’t know. We are okay with being undiagnosed. We are not okay with no one exploring why.

3.5 I took the pledge. Will you?

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Is she going to be retarded? I asked the neurologist. Boo was 11 months old. She had two EEG’s and an MRI of her brain. They told us she had a “slow” brain pattern. That her development was delayed. That Boo would possibly need care for the rest of her life. That they don’t use the word retarded any more. They use intellectually delayed.

I had moved from wondering if Boo would live past her first week of life to would she be retarded in 11 short months. It took another year for me to evolve from retarded to delayed. To understand and feel that a word is not just a word. That it matters what you call people. Here is why that revolution matters.


The Merriam-Webster Dictionary defines retarded as “sometimes offensive : slow or limited in intellectual or emotional development”

Why is this “sometimes offensive”? After all the definition simply states that Boo is limited in intellectual or emotional development. That is true. That is not offensive. She is limited. What is also true is she is gaining. Limited does not mean stopped. 

Here is why the caveat of “sometimes offensive” the dictionary also defines retarded as: stupid, obtuse or ineffective.

My daughter is not any of these. She is not slow, anyone who has had to chase her down a hallway in her attempt to escape knows that fact. She is not stupid. The moment you meet her you see the spark in her eyes. Boo is not obtuse. She is sensitive and caring. Boo is not ineffective. The change she has made in my life, her classmates lives and some of yours disproves that definition. 

Words have power. Would you say nigger or faggot? No. Because you know in uttering those words you are hurting someone. So why is retard exempt? Because it is part of your vernacular, because you have always said it, insert an excuse here.

Last year during this campaign people told me that the word isn’t used often anymore. That this is an older terms those of us from the 80’s use. But that is untrue. It was used last Thursday in Abby’s school. The administration used a video depicting dyslexia. Overheard in the assembly of middle schoolers: they are just retarded and dumb. Whispered, of course. They knew the word was wrong. They knew the word was insulting. 

They used it anyway. 

When I asked the neurologist 5 years ago if my daughter would be retarded, I wasn’t being insensitive. I was not being derogatory or insulting Boo. I was uninformed. I was ignorant of the harm and tears this word can cause.

Maybe you can use that excuse too. You were uninformed. You didn’t know that a word could hurt. Then you met Boo. Now you are not uniformed. Now you know that a word can cause pain. I ask you, the next time you utter the word retarded picture this face:



And ask, would you say that word in front of her? In front of me? In front of her family? If the answer is no, then you have your answer to the question is the word retard is just a word.

When I first put this picture in this post I had the word RETARD stamped over her face. But the image made me gag. I cannot imagine my daughter as a retard (stupid, obtuse, ineffective). I hope the thought of RETARD over her face makes you shudder as well. I took the pledge, will you?


Will my child cause your favorite teacher to be laid off?

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Last week there was an article in our local paper titled, “Special Education costs blamed for (school) layoffs“. Lucky for Boo this is not her school we are talking about. However it struck a chord. Why must we pit one against another?

Our town is small. We do not have many businesses therefore the tax burden rests on the property owners. Frequently we see battles pitting the school department against the municipal side of the budget. This is the first time, to my recollection that we are putting students (and their needs) against one another.

I am extraordinarily grateful that this article was not about our town. Yet I live with a fear that it will be soon and we should explore ways to avoid it at all costs.  


Probably because this is the first time I have had a child in the “special education” cohort of the school system.

Which is not quite true. My older daughter goes three mornings a week for extra help in math. She has gone to summer school for math assistance. This is the only subject she struggles in and the school (and tax payers) have supported her needs. I am sure it is for the care they show all students and also to increase the MCAS standing of the school. A quid pro quo, if you will.

Boo on the other hand is a different situation. Boo brings tremendous value to her classroom. Her classmates will grow to be more empathetic, understanding of another’s needs and more accepting of their peers. Inclusion means that while Boo is exposed to peers for advancement while she advances their sense of community. 

But she is a drain on the school system. Boo receives physical, occupational and speech therapy from the school system (which in my opinion should be the responsibility of our insurance company to pay). She has a dedicated 1:1 therapist that is with her during the school day. This is for Boo’s safety (she wanders) and to make sure she can participate in class activities. That is, after all, the purpose of inclusion: to have Boo participate. Without the aide she simply cannot. 

Due to the layoffs, that other school system has modified some 1:1 care. Now a therapist will have 2 (or more) children under their responsibility. Let me explain why that is an impossible task to give that staff member. Logistically it is difficult. If you take your two children to the playground you know they will not leave. If a therapist takes Boo and her other charge, she cannot have Boo on the slide and the other child on the swing. How can she make sure both are safe? What if one has to use the bathroom? 

Education-wise it is still ill-advised. The therapist sits at a table with Boo and reviews counting. If she has another charge, how can the children and the therapist concentrate and make sure the program is run correctly and with consistency? Just as a teacher with 30 students in a class cannot make sure every child understands the Vietnam War, a special needs therapist cannot split their attention equally with more than one child and be confident they are getting the most out of the child. Having another child is a distraction for all.

But who should pay? That is really the question and you are probably not going to like my answer.

I believe the parent should pay for some of the care and education. It is our child and our responsibility. However we cannot. We simply do not have the money to pay. Just as the town budget is stretched a parent of a special needs child is under a financial burden unlike no other.  Our medical bills are higher, we pay out of pocket for supplemental insurance and at age 5 we are still purchasing diapers, wipes and pull-ups. Due to the amount of physician and therapy appointments we also cannot work 40 hour work-weeks. A family with a special needs child budgets in ways you never imagined. It is constricting and inventive.

Here is where I will again anger many. I also think that the tax payers should not have to pay for music, sports, clubs or electives. English, foreign language, history, math, science? Yes. That is education. But electives, including music and art, should be the responsibility of the parent to pay. Those electives are also a drain on the school system. There are pensions, salaries and healthcare costs associated with those staff members just as the special education staff. 

There are a lot more students taking electives than using the special education department. 

I am not sure of the answer. I do believe that we should pay a portion of Boo’s care. I firmly believe that our insurance company should have to pay for her therapies that happen in school, including her ABA therapies. I think some sliding scale should be in place to take some portion of the expense off the community.

However, if I am going to pay privately for Boo’s public education than I believe I should also have to pay for my older daughter’s music instruction.  


It’s okay she is turning colors…

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Add another diagnosis to Boo’s repertoire. Okay, not another one but “color changes” has officially been updated to Raynaud’s Disease. With this polar vortex happening, her color changes have become more pronounced and she is for the first time telling me, “hands hurt”.

Which is good.


Because, first, she is aware of the pain. Second, she is telling us and third…okay no third upside. Before seeing the doctor we asked Boo’s teachers and therapists to have her skip recess. I know that seems unfair, because the girl likes her slide. However being the mean mom that I am I thought frostbite trumps love of slides.

We finally got an appointment to see her rheumatologist this week. We left at 6:30 in the morning for a 9:30 appointment and made it on time (yeah me!).  This is typical for an early morning appointment. There have been days when we are an hour early and others when, well…when you wait three months for an appointment you better be an early bird and not the late worm.

Into the appointment walks Boo’s previous rheumatologist, the one that left us for Singapore was back. I did a happy dance. Seriously a happy dance. She told us that Boo Reynaurd’s. She further explained that typically they don’t diagnose it this young but obviously she has had it since birth. I honestly breathed a sigh of relief, we were not imagining it. Then the other shoe drops as she told me: However, due to her very low blood pressure we cannot treat her as we typically would medicate. The risk of bottoming out her pressure is not acceptable to the benefit of providing her relief.

Um, low blood pressure? We were just seen by cardiology. Remember, we don’t have to go back for five years! They never mentioned anything about a blood pressure issue. We immediately place a call into cardiology and in typical fashion hear back two days later. 

It seems Boo has always had significantly low blood pressure. We were not told as it does not seem to impact her. Because she isn’t complaining that she is dizzy (would she know how to?) or passing out (obvious clue thank goodness) there is no reason at this time to worry about it.

But if she passes out be sure to call them ASAP. Dude, I’m not calling you I’m calling 911 if that starts to happen. Of course we are not going to medicate the Raynaurd’s if giving her medication will potentially bottom out her blood pressure and kill her. We will keep her warm and try to limit her exposure to the polar vortex.

I am struggling with the faith that some day, some freaking day, instead of being told: well, it isn’t normal but it doesn’t seem to bother her (or my new favorite: just keep doing what you are doing because it is working) a physician is going to say to me:
  

This is what Boo has and this is how we are going to treat it.







Got humor?

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How to survive life as a parent with special needs. Okay that is a lofty goal! It is hard enough navigating parenting with a child who is typical. Add in a few diagnoses and life can get overwhelming. But here is my go-to list for surviving the life I never expected.

1. Keep your sense of humor. If you have lost your sense of humor because it was drowned by vomit, poop, tantrums or tears Google comedian Steven Wright. How can you not chuckle at thinking: “Is it weird in here or is it just me?” (Steven Wright)

2. Make a daily goal. For me it used to be brushing my teeth at least once a day. Now it is making sure I get to work without evidence of Boo’s breakfast on my shoulder.

3. If you feel all alone in this life as a parent with special needs, you probably are. But it is your job to find support. To scream at the top of your lungs I NEED HELP. If no one hears you, let me know and I will add my voice to yours.

4. Make your child’s teacher/therapist/doctor your friend. Find out about their lives. Interact with those who your child spends most of their time. It will enrich your life in ways you cannot imagine and make issue #3 far less likely to happen.

5. Have a glass of wine. Not the bottle a glass. 

6. Allow yourself to cry, laugh, grieve and rejoice all in the same minute. It doesn’t mean you’ve lost your mind but that you may have found it.

7. Find “ME” time. I know, I hardly ever do. But when I can run for just 30 minutes I come back a much nicer wife, mother and person. It doesn’t have to be every day (oh how I wish I could find me time every day) but make time for you.

8. You hopefully have a partner. The child’s mother or father. Guess what, they are your partner in this and they too are parents with special needs. So lean on them. Consult them. Do not do this all on your own and remember that partner is there. Make them take your child to therapy, a doctor’s appointment or do drop-off at school. For too long of a time I tried to be super mom, handling everything for Boo. Once I let David in our lives were much easier. If you don’t have a partner look at rule #3.

9. It’s okay to wear your sweat pants with a hole in the crotch for a few days in a row. Just try to remember to wear underwear so you are not arrested for pulling a Miley Cyrus at school drop-off.

10. Mix-up your friends. Try to anyway. Keep a healthy mix of parents with special needs and those with that normal kid who just talked back to them. It will make you appreciate your own little wonder. It will also help to make sure you feel alone.

11. It’s okay to get pissed off. Seriously pissy at this life you didn’t expect or prepare. And once you think you’ve got it handled someone will take the rug out from under you. Consider yourself warned. It is okay to question yourself, your God and your child’s doctor. It is not okay for any freaking one to tell you that you are not allowed to feel anger, grief or whatever emotion you may be going through.

12.  Your house doesn’t have to be Martha Stewart Spotless. I will say the state of our life is directly reflected in the mess state of the kitchen. But I have stopped saying to people, sorry for the mess. Instead I say, This is how it always looks and today is actually better.

13. Remember you are more than a parent. You are more than a parent of a child with special needs. You are you and may I say you are doing a fine job of navigating this life the best you can.

Lastly, and this is important: Five years into this life as a parent with special needs I will say this is our life. What we make of it. A glass of wine helps. But what really makes me survive?

The friends who have stood by to hold, comfort and more importantly laugh with me. So find some of those and keep them close. They will help you keep your sense of humor and your sense of self.

A funny thing

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A funny thing happened on the way to becoming Boo’s mom. I knew Boo was not going to be the same from Abby right from the start. In a way that does not diminish my love and adoration for her sister, but in a way that makes me a better mom to both.  However her being Boo turned me into mom that celebrates moments that shouldn’t happen.
Those who know this story are probably bored by now, but with Boo I am reminded every moment is precious. Even when she shits down my leg I can think “EW” and “wow she said poop” at the exact same moment. The thought that follows close after is thank the Good Lord and all that is Holy I had pants on. 

There have been times when I have been in shorts.

When Boo runs to her sister to get her off the bus I think this is the child who Early Intervention told me might never walk.  I rejoice because I can think of not one other person who gets to see their children race towards one another every afternoon at 4pm. Trust me on this, I never raced to get my brother off the bus.

https://www.youtube.com/v/WHgntYWuEW0?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata

 
When Boo says “mum” over and over again I never get tired of hearing her voice. I may wish for an indoor voice at 6am but I never shut the monitor off. I lay in bed and think wow she is up to her 20th word in a row. This is the child I worried would never speak and had her entire family learning sign language to help her communicate.

When I walk into the kitchen and find that Boo has relocated the furniture, managed to climb up the chair and is laughing like a loon I think to myself this is the girl they say has poor motor planning skills.

https://www.youtube.com/v/gFeOIM37YLU?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata

A funny thing happened on the way to becoming a mom…I became a mom of a child with special needs. Not only special but unique. One who five years later science still does not have a true diagnosis, other than unknown genetic syndrome. With a lot of other issues.

 A funny thing happened on the way to becoming a mom with a child who has special needs I discovered what really matters in life.

https://www.youtube.com/v/D0n9DKpf8b8?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata

 

Finish the Sentence Friday

I don’t know if I’m ready….

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I don’t know if I am ready for this post. To write it. To understand it. To mean it. To be comfortable with myself to say here I am folks and it may not be pretty. You have been warned. This post is long and rambling but while writing it I had an epiphany.

Regular readers know that Boo has an undiagnosed genetic disorder, probably neurological in nature. A month ago she had to undergo neurological-psychological testing to have a better excuse than we don’t know what the freak is wrong with your daughter to satisfy the State and Insurance Gods.

Last week we received the results of the neuro-psych testing. Most of it was unsurprising. Boo has an intellectual disability (no kidding), she has a sensory processing disorder (um, yes but did you see her video at the beach?), delayed language and….autism.

I’ll get back to that last one in a moment. For the Intellectual Disability we were thankful that her skills are scattered, so she shows not only growth but potential. The majority of her skills is in the “very low” (disabled) IQ but she did have a smattering of “low” IQ in some areas. 

They asked me if I believed the testing and I said I did with the caveat that had Boo’s known therapists had performed the tests she would have had stronger results. I do not believe the Psychologist put the tests in a context where Boo understood what was being asked of her. But they are standardized tests and the tests have to be done the same way. Let’s just agree to disagree on that one. Right, Boo’s therapists who are reading this rant?

I asked why, when for all this time we were repeatedly told our daughter did not have autism this decision was made. I am not adverse to the label, but I want the reasoning. According to the “standardized” testing Boo qualifies as Autistic due to her hand flapping (although this is only with excitement and not a stim), her sensory issues, her toe-walking and her social skills. Plus some other fancy words but I had kind of stopped listening.

Um, what? You had me until social skills. I agree with everything above when except social. I did not think I could have a child more social than Abby. Boo loves people. She loves to please, she loves to be around her friends. 

What I learned is that social interest/motivation is different from social ability. The Psychologist also expressed worry that Boo will interact only on her own agenda. But when prompted to look at the Psychologist she wouldn’t. Again I said, had her therapists she sees everyday had conducted the testing I believe the results would have been different.

But they are standardized tests and the tests have to be done the same way. Yeah, I heard you the first time.

I asked if where Boo is developmentally may have some impact on her social “ability”. Unfortunately as delayed as Boo is, developmentally her social development is even more hindered. Had the delays been closer together they would not have been so concerned.

But here is the kicker…when asked how this changes what we do for Boo. Now that she is autistic what therapies do we add, what do we take away, do we try play therapy, try yoga again, anything that I haven’t thought of….I was told:

“Keep doing whatever you are doing”.


Yeah, thanks for that.

I’m not upset by the autism label. Okay I was at first. I was worried that I am in denial. However in truth, my fear of the label is that doctors, teachers and therapists will stop looking to see what is at the root of Boo’s issues. I called her neurologist, whom I not only adore but respect and trust. 

Am I in denial?, I asked. Has Boo had autism all along and I just didn’t want to know?

No, she replied. With the standardized testing Boo qualifies for the autism diagnosis. We have never tested her before with ADOS due to her intellectual disability. Once you get down to the testing, where her strengths and weakness are clearly shown you get a better picture.  But (and this is an important but she stressed) autism is not only what is wrong with Boo. What is wrong with Boo is she has an unknown genetic disorder, an intellectual disability and other medical concerns that now include autism. 

Our Boo, she said, is something unknown and also all these things we can name. Our goal now is to make sure no one ever stops looking at the whole child.  

I struggled with this post, for some time. I struggled with understanding what autism means to me. I have plenty of friends whose children have autism. I know it doesn’t make them less. I know that they are just like Boo, unique and lovely and precious. But after all this time this was one diagnosis I never considered. Or been told to consider by her team.

I just thought Boo had an intellectual delay. I think, honestly that was easier to deal with because delay just meant she hadn’t caught up yet. Flights are delayed all the time but eventually you get to your destination. 

Epiphany time! There was a hope that was buried deep in my heart that I never knew was lingering: that she would, someday, catch up and plateau. Did I think she would be a Harvard grad? Not so much. But then I am not too impressed with Harvard grads lately. 

You don’t recover from autism. Boo will always be intellectually disabled. The hope I didn’t know existed kind of broke my heart for a day or two. I struggled with this added diagnosis and the realization Boo may never catch up. My love never wavered that she will always be my Boo. That we will always do what we have been doing and continue to defy those who say she will not do….

It wasn’t until someone asked me if Boo was “a little autistic” and I could realize with a smile, that being a little autistic was like being a little pregnant.

“Yes, Boo is autistic but she is also something so much more”, I replied.



I owe an apology

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Like many, I have fallen trap to a Facebook hoax. I reshared a link that stated Jenny McCarthy informed the world that her son did not have autism. Thankfully she was quick to rebuke the misleading information. By misinformation I am speaking to the fact that she has never said her son does not have autism.

I rarely reshare celebrity stories or thoughts because I usually do not believe (or care about) the hype.  But in this case it hit a nerve.

 

I admire Ms. McCarthy for being a proponent of autism education. I admire her dedication to her son and her willingness to say this is what autism looks like. I do wish more people would say MAY look like.  As any friend of mine with a child who has autism will tell you, they are unique from the color of their hair to their behavior to their abilities.

However her strong campaign against vaccination is something I cannot agree. It worries me when people use a celebrity endorsement to justify their own actions or non-actions. It is one thing to decide to go gluten-free to do your own investigation on how your child will react. It is another not to vaccinate your child (and potentially expose other children) to a life-threatening disease. In the only published study linking vaccinations to autism the lead researcher lost his medical license due to his irresponsibility in the conduction of the study and the study was revoked from medical publication. 

I understand that you can interpret a study to suit your purpose. Pro- or anti- vaccine link. I am not speaking to that as I am completely inept at that discussion.To paraphrase the Vice President of Clinical Innovation at Cedars-Sinai stated to the National Geographic: you can have an opinion but you cannot state that opinion as fact.

I have two different views on this subject, from two ladies I both respect and admire.

The first is a mom who decided not to vaccinate her children. However she did this after reading medical journals, doing her own research and consultation with her children’s pediatricians.

The second is a mom who vaccinated her children, but to her it was a deep seeded belief to vaccinate. Her mom was a polio survivor. But survivor is probably a poor term. Her mother was a polio warrior. One who suffered in the time before vaccination. She fought polio until her death at age 70. Her children watched her suffer and live with grace.

Myself? I honestly didn’t think of it with either child. I automatically vaccinated them. However with Boo I spoke with her pediatrician and they modified the schedule due to her health issues. Our Pedi is great. She is very conservative when it comes to vaccinations–even the flu shot–and will minimize the quantity of vaccinations given at one visit. And if you have a runny nose? She will reschedule your appointment and not six months from now. Just call and stop by. She is quite awesome, in addition to saving Boo’s life five years ago.

I am on my soapbox here, and I admit it. I also have no problem telling you and everyone else my opinion on something. But you should never use a “Jenn said” as your reason for choosing a course of action with your child.  

As far as autism and the decision not to vaccinate, research has proven that there is no correlation. In most cases this would be a non-issue. The studies have proven time and again that there is no link. However celebrity causes will continue to advocate for more research. Which is great, that is what you should advocate: more research not telling a scared mom that a vaccine gave her child autism.

The decision not to vaccinate your child should be based on your own research, consultation with your physician and a heck of a lot of soul-searching.

But never on the basis of a celebrity. 

A year of thankful

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I haven’t played with Lizzi in a while. Not that I haven’t been thankful, just been to busy to give Thanks. I am sure I’m not the only one! To suck up show how thankful I am here I am breaking the rules (go figure) and doing 12 things of thankful. One for every month of 2013 I survived. 

January, I was thankful for the Liebster award.

February, I was thankful for Abby’s sense of humor and honest about who her favorite person is (hint, not me).

March, I was thankful for people understanding that the word Retard means something different to me now and joining me in abolishing the word.

April made me thankful for Jimmy Buffett as I realize he gives us the soundtrack for a laid back life. The sound track, not the manual.

May I was thankful to be able to tell people what drives me crazy.

June I was not thankful for yard work but happy to know I am not alone.

July I was thankful for all the ways my girls make me smile.

August I was thankful for husbands.

September I was thankful the girls were back in school. Also that boys are gross.

October I was thankful for Boo’s therapists and friends that let me take the easy way out.

November I was just thankful for Boo.

December I am thankful that I have come a long way since January.




Ten Things of Thankful

We are still okay…

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Boo has had to undergo neurological/psychiatric testing over the past two weeks. There hasn’t been any issues, other than her turning five. In our state (for insurance purposes, I believe) once you turn the ripe old age of five you are no longer allowed to be undiagnosed and/or globally delayed.

Boo had to go twice, for two hours each day, to meet with a psychologist for a battery of tests. (I think battery is a strong word, she didn’t hurt Boo). The tests varied from intelligence/cognitive testing to behavioral/autism to play skills. Part of me wanted Boo to bomb the testing, securing her services. The good mom in me wanted her to excel.

Typical Boo she did a little of both and managed to frustrate the doctor. I wish I could have Kristi’s artistic talent to demonstrate the following (I tried, I failed, I didn’t want to hurt your eyes):

Doctor: Boo stack the blocks like this (imagine, two next to each other and one on top)
Boo: (hands the doctor the blocks after banging them for a minute)

Doctor: Can Boo climb onto and out of an adult chair?
Boo: Moves said chair next to exam table, proceeds to climb on top of chair, to table, to window sill in an attempt to get out of the room. We happen to be on the 10th floor and very thankful the windows don’t open.

I’m impressed that Boo realized she had to do something with both the blocks and the chair. The doctor is distressed that she cannot follow direction.

At the end of the two days the doctor asked us if we had any questions. I ask her how she feels Boo did. She had previously thrown out words: autism, PPD-NOS, mentally disabled, intellectually disabled, ADHD and a bunch of other terms. Her response:

I have to score the tests.

Hm…now those that know me know that I tend not to be brushed off. I (politely, I swear) reminded the woman that she was an experienced professional who must have some instinct to how Boo had tested.

After a moment or two she told us that she honestly didn’t know. That she wanted to show the test results and video to not only Boo’s neurologist (whom I adore and trust) along with other colleagues. How Boo performed was baffling:

She shows signs of Autism: Will not look the doctor in the eye.

She shows signs that a child with Autism wont: She told the doctor to “look” and sought her attention.

Autism: Hand flapping, quickly distracted, would not follow directions, toe walking
Not: Social, engaging with materials, attempts to please, would put heals down when prompted by cue

Autism: lack of safety awareness
Not: asked for help when trying to get down off the exam table

Intellectually disabled: Cannot copy a “t” on the paper
Not intellectually disabled: can hold a pencil in the correct grasp

ID: Cannot follow a two-step direction
Not: Knew she needed a pencil to draw on paper

ID: Poor motor planning
Not: Pushed chair to get to top of exam table

The examples go on and on. In the end the doctor said at this point Boo is a Medical Enigma.

Where have I heard that before?

She will convene a team (about damn time) to look over everything. She agrees (as do neurology and genetics) that whatever is going on is neurological in origin. In the end it doesn’t really matter what “term” they give Boo. I think Bridgetitis is a lovely term. We will continue to advocate, get therapies that work and love her the same with or without a medical diagnosis.

At five years old, she remains undiagnosed and we are still okay with that.