Category Archives: inclusion

Throw Back Thursday-Turning Right

Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts. Posts from before anyone read my blog. I hope you enjoy the trip back in time.

Throw back Thursday-Blog style

(Originally posted 15-JUL-2012)

Although Boo is not autistic, she exhibits a lot of similar behavior. This weekend I read an article in Outside magazine titled “Little Boy Lost” by Dan King (http://www.outsideonline.com/outdoor-adventure/outdoor-skills/survival/Catch-Me-If-You-Can-20120801.html?page=all) . It is about an 8YO autistic boy that was lost for five days in the forest. In the article they state that it is estimated that “40 percent of children with autism will go missing at some point in their lives” (page 75 section 4 of the article).

It happened to Boo this week. She not only escaped from her classroom, she wandered quite far from the class into the hallways of the school.

For a little back-story, when Boo first started this program I repeatedly warned them that she needed a one-to-one dedicated aide. I also warned them of her tendency to wander. She would not be misbehaving, just something may catch her attention and the next thing you know she is down the street.

Fast-forward six-months and Boo’s teacher not only requests an assigned aide, an updated IEP and a transition to a dedicated special needs class for half the day. This new program began this summer. Again, we expressed to the teachers & aides of Boo’s tendency to wander. It was agreed that all doors would be shut and that Boo would have a person assigned to her well-being.

Thursday it happened. One teacher thought the other was working with Boo, when they notice the door was opened (handicapped, so much easier to open for Boo!) and no Boo to be found. They were unsure how much time had elapsed, quickly got coverage for the other children in the class and went to on a Boo hunt.

This is when I know that Boo has a guardian angel looking out for her well-being. As this is the summer, the school is not locked to the public and the front doors were wide open. Had Boo taken a left out of the classroom she would have been a short walk to the great outdoors. Had this been during the traditional school year, there would have been students milling around and she might have been tripped or run down by an energetic child.

But she took a right turn and ended up in the middle of the school. Quite a distance away from her class, but still a right turn. One that led her into the relative safety of the indoors. Thankfully her teachers found her in short-order, thankfully she is fine and this was a lesson learned for all of us.

Her daddy, rightfully so, went nuclear when I told him. He didn’t understand why I was calm about the incident.

First, I have been waiting for this to happen for six months and was just thankful that it happened in a somewhat controlled manner. Secondly, we are not saints and it has happened to us! In the front yard, blink for a moment and she is gone. Sure the teachers were warned but until it happened they would not believe us. Lastly, I do not want to ever think the teachers cannot tell us something. I want them to know I not only will I not ‘overreact’ I will work with them to figure out a solution that will work in the school and home too.

I wasn’t going to post about what happened on Thursday. But after reading the Outside magazine article, I felt compelled to share the story. Boo was missing for, at most, 10 minutes and I was completely unaware. Because Boo is virtually non-verbal, had her teachers not told me, I would have never known. Had Boo taken a left-turn and been found by a stranger she would not have been able to give them any information. Even scarier, had she taken a left and gone unnoticed she very easily could have run into the busy street. She is so petite, a driver may not have noticed until too late. The what-if scenarios are endless and nightmarish.

If 40% of autistic children ‘elope’ how can they not figure out why? With all the money in medical research, they can figure out how to keep a man happy but not our children safe.

Personally, I am going to see if they can get a door alarm for Boo’s class. I am going to look into a medical alert bracelet for her to wear with her name and number (the trick will be making her wear it). I may even go the extreme and start labeling the inside of her clothes!

I would be very thankful for any other ideas. What do you do to make sure your child is safe if they wander?

40% of autistic children go missing. Thank God Boo took a right-turn.

The joy of language

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Boo gives me a lot of atypical milestones, moments, frustrations and joys. Every once in a while, though Boo gives me that typical parent moment when I realize even special children are typical in ways never imagined.

Boo has worked so very hard to obtain language. She has been in speech therapy since she was in two years old. Her therapists have never given up on her. They have persevered, coming up with new techniques, scaling things back or pushing her forward as warranted.

Like most parents the first time you hear your child babble on the baby monitor you lay there and smile, rejoice and wonder what the heck they are saying.

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When you go to their room in the morning and they greet you like you just missed the best dream ever your heart warms.

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And if you are a normal parent by 7 pm you just wish they would stop talking. When you tire of trying to decipher what they are trying to tell you. Even as they crack you up.

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I live for these typical moments. The moments that most parents, to some extent, gets to witness. The babble, the random words and the expressions. Things five years ago I never imagined.

Even as my ears ring.

A special thank you to Boo’s numerous therapists for giving me these moments.

And yes, Boo is still wearing her Halloween pajamas. And yes, I know it is May. Don’t judge.

Mom in the elevator

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Dear Mom in the Elevator,

I’m sorry. I apologize for leaving so quickly. I saw you and your husband in the elevator at Children’s. You were wearing the badge of the NICU. You had hit the elevator for the respite floor. You looked so spent. So wiped. So scared.

As I left with Boo for her cardiology appointment I turned and said, It gets easier.

Then I left.

I’m sorry. I should have said something sooner. I should explained that it gets easier but not better. That today you are worried about your newborn and tomorrow you will be worried about you toddler.

But I swear it gets easier. You will be hit in the gut many times over the next few ~~years~~ decades. Right now, believe it or not, is the easiest time of your life with a sick newborn. You have the support of awesome nurses and physicians who allow you to nap, to eat, to cry and to ask questions.

Soon, hopefully, you will be discharged. You will be scared. No, you will be terrified. As much as you looked forward to the moment of taking your baby home you are scared to your core. Because at this moment you realize you are parenting without a net. You are taking a child home that just 8 hours earlier was on a cardiac (or other) monitor. The doctors and nurses assure you that they are healthy enough to go home. As much as you (and everyone you know) prayed for this moment in time you are terrified that you are not ready.

But you are. There are just somethings you have to do to make sure you and your child stay whole.

You need to create a village. That friend that says call me, what can I do, I’m here for you. Hold them to it. Call them and say HELP ME I’M SCARED. More scared than you ever imagined. Unless you have been in the NICU you cannot describe the level of terror. They won’t get it, but they will hurt for you. They will be there for you. But only if you let them.

But I get it. I understand the moment you thought your child was going to die. The moment when you realized they would live. The moment you were told they were coming home.

It scared the crap out of me. I mean, like almost threw up I was so scared.

There will be moments in the future when you will worry, when you will cry, when you will say this is not what I signed up for…but they pale in comparison to the moment.

The moment when you go from being a parent in the NICU to a parent without a net.

Here is what you need:

Your partner. You are in this together. Remember that and hold them to it.
Your best friend. They promised to be there forever. Hold them to it.
Your mom. She loves you, no matter what. She might not understand what you are going through, but let her be there.
Your pediatrician. If you do not have one that is willing to be answer your call at 2AM find a new one. Their job is to be there for you and your child. Hold them to it.
Your friends. Here’s the thing. They want to be there for you. But they don’t know how. They are afraid to call and bother you, they don’t want to burden you, they are ashamed that they complain about their child talking nonstop when yours is nonverbal, they don’t know how they can help. So tell them. Tell them what you need. Be it a pizza delivered, a bathroom cleaned, a shoulder to break on or a text fest where you just spew. But let them be there. Don’t hide what you are going through because then they cannot help. You need them, it’s your job to let them know it.

Lastly, and this is the most important, listen to your inner warrior mom. You know your child better than any doctor, nurse or provider. If they smell funny to you then something is going on. I once had a nurse tell me that mother’s instinct trumps doctors order any day of the week. Remember that.

When you gave birth to a child with a medical issue and/or special need, you didn’t just become a mom (sorry to tell you). You became a warrior mom. One who advocates, medicates, does therapy, uses Google to the ends of the research and who loves their child beyond all measure.

It does get easier. Not better, but easier. The caveat to being easier is to have your village. Go find them. Embrace them. Lean on them. I should have done it earlier. I am one of the lucky ones. My village found me.

Dear Mom in the elevator, you are not alone. You are scared. You are terrified. You feel overwhelmed and heartsick. But you are not alone. Create your village. Embrace them. That is what makes the NICU experience bearable. I remember just 5 years ago keeping people away. I missed out on the support I needed. It took years for me to get it. That my village was there waiting to be tapped. Once I understood this journey became easier.

Not better, but easier.

Don’t make that mistake, Dear Mom In the Elevator. Let your support system be there for you now and forever.

Love,
A parent who has been there and has the t-shirt.

A parent that is there for you, if you need.

A mom who wishes she spoke up sooner. That she said HELP. That she allowed those who love her and her child to help them.

PS–I had a different post almost ready for this Finish This Sentence Friday, Dear Mom…but then the elevator happened.

Holy crap I’m a cohost and really hope I didn’t screw this up 🙂 Please link up below!

What happens…

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What happens when you begin to lose faith? In perspective we haven’t been on this journey long. Five years is nothing when compared to other children’s battles. Having a child undiagnosed with unexplained ailments compared being a parent whose child is fighting a life threatening illness is insignificant in comparison.
I apologize to all who read the Dr. House post and the Poor Me post. I promise I am not just regurgitating, or wallowing. I was just hit, yet again, by the bat that is a doctor who passed the buck.

I feel foolish and selfish for even getting upset. Let alone discussing losing faith. I try to keep this blog upbeat and fresh. I hate wallowing, repeating myself. But I am struggling. I am second guessing myself. I am wondering if I am the mom who cried wolf.

Why am I upset if not one of the five doctors I have contacted do not think it is significant or alarming that Boo is having swelling in her arms, hands, feet and legs?

So what do I do when I begin to lose faith? I get pissed. Seriously pissed. In all honesty I also had a healthy cry, a text-fest with Tia and a glass of wine. Maybe two.

But I got pissed and I decided that it’s not okay. I’m okay with Boo being undiagnosed but I am no longer okay with cardiology telling me to call rheumatology who tells me to call the cardiology who tell us to have our Pedi order a test.

Which she does and then that test is cancelled by radiology who doesn’t think it is necessary.

Because really, why should we investigate why a child is having intermittent swelling in their extremities for no reason?

So I got pissed. I did some more research (cause I have spare time) and found another specialist to contact. I am making cardiology see her next week and not leaving until he refers us some where. Any where.

I have reached out to two different “Dr. House” type doctors that are not local but I don’t care. I have e-mailed yet another doctor whose blog I read to ask for a recommendation. I found through my own searching of Children’s Hospital a center that deals with disorders of the vascular system.

I am not giving up. I am not crying wolf. I am not waving the white flag.

Some day. Some how. My child will have a doctor look at her as a whole child and not say call another doctor who will then cancel a test.

Just because her various ailments are not deadly doesn’t make them any less significant. They just make it easy to put into perspective. I know what Boo is experiencing isn’t life threatening. But it is impacting her life.

And that’s enough for me to get my big girl pants on.

Some people lose faith and curl up in a ball. There is nothing wrong with regrouping. Me?

I get pissed.

Thank you to everyone who reached out last week. Who gave me ideas, support and were just there being my village. I am using all of the tools you give me to stop wallowing and instead remembering the warrior mom creed:

You will not dismiss my child. She is too important.

Okay, if it’s not our creed it should be.

No interest

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I have no interest in being a person who wallows. I do not want to be a blog that focuses on one theme. I think of this blog as my therapy. If I am lucky it is your therapy too because you realize you are not alone.

Whether your child is healthy and ornery like Abby or challenging like Boo or your house has a crazy puppy who is equal parts loving and destroying your house. I want all to feel welcome and to feel a connection.
Then there are days like today. The day that started out promising, too rainy to run. Waking up early to realize that the morning goes smoothly without incident. You knew it was too good to last.

It started innocently enough. With your daughter telling you that her pants had a whole in the, well, crotch yesterday. A boy on the bus noticed and it ended up into a discussion about who had an elephant trunk and who was flat.

Yeah. I went there.

You tell the boys mom. Because you want to make sure that 1. she knows your child typically does not go into school with a hole in her crotch (unless she is Kristi) and 2. that you made sure there was no inappropriate show & tell on the bus that would get either kid suspended from elementary school. The other mom kind of reacted differently than you, had ‘the talk’ with her child. You felt bad because you saw and admitted to the inappropriate humor to the situation. The fact that Kristi saw the humor and said HEY RIGHT A BLOG POST ABOUT IT made you feel better.

You think that is the most you would have to deal with in a day. You think hey I handled this maturely. I answered my daughter’s questions in a way that she understood and didn’t feel embarrassed about. I promised not to tell her dad. Thank GOD he doesn’t read the blog since I never promised her I wouldn’t tell the world.

Then the other shoe drops. Boo happens. She has a meltdown at school and at home. Abby tries to compensate by being the good girl. She tries to placate Boo but I stop her because I do not want to reward Boo’s behavior.

I realize that I am wallowing. I am stuck in this mantra that Boo is sucking the life out of us. That as awesome as she is, she is draining. That I suck at this. That I cannot stop wondering where Spring is. When life will get easier.

When Boo will not demand so much energy (probably not going to happen). That I will not have to demand a doctor pay attention.

That I will not think life would be easier with the Abby issues.

I never intended to resent Boo. But sometimes I do. Sometimes I suck at this whole “special” parenting thing.

Something else I never expected to do. I never had an interest in being a parent, let alone a parent of a child with challenges. Sometimes it is great. Sometimes it sucks. Most times it is not the life I intended.

But it is my life and I am doing the best I can, even when it seems I’m not.

The Challenge Wall

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A few weeks ago I wrote about a new program at Abby’s school that celebrated Special Needs Awareness Month. I had to take down the children’s challenges as the program had ended (I did save a few) but thought you might like to see how incredible this project turned out.

We incorporated celebrities who are outspoken about their difficulties and placed the students (and others) challenges above, below, next and over them.

Each week the poster of the celebrity changed, but the children’s never did. To show that you might always have a disability, but you will always be you.

Then the kindergarten teachers took our idea and blew us away, having the students draw their challenges.

I am overwhelmed by how honest and forthcoming the students were. There were so many honest conversations at home, at school and on the playground.

This video was shown on World Down Syndrome Day. The one response from the kids? They wished it showed all disabilities not just Down Syndrome. But they understood the message: your friend is your friend. It’s as simple as that.

https://youtube.googleapis.com/v/5M–xOyGUX4&source=uds

I would like to thank Abby’s school for taking on this month long program and simply rocking it. The Challenge will be back next year and in more schools. I cannot wait to see how the kids evolve.

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.

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.

Thanks but I’d rather have a glass of wine….

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It was difficult to find the thanks this week. But I’m going to try because Lizzi is ~~hounding~~ encouraging me. But this week was full of floods.

The first flood was quite literal.

1. I am thankful that if a frozen pipe is going to burst in the walk-in closet on the second floor that my husband was there to go all handy and run around the basement for the shut-off valve.

2. I am thankful that the plumber who came over on a Saturday morning did not make us take out a 2nd mortgage to pay his bill.

3. I am thankful that Abby was there to feed Boo breakfast, snack and lunch while her dad and I contended with the flood.

4. I am trying to be thankful that although Abby wouldn’t change Boo into clothes or hey a clean pull-up. I am thankful nothing escaped the close to exploding diaper.

5. I am thankful that although I hadn’t showered before the flood there was still hot water left to take one after it was under control.

The second flood hurt more as this time I had a flood of emotions.

6. I am thankful for restraint when I didn’t smack the psychologist who said that saying Boo was autistic wouldn’t change how I would feel about my child. Although I did scream really loudly in my head NO SHIT HARVARD.

7. I am thankful for Boo’s PT not only babysat Boo & Abby so I could decompress but then stayed up until 1 am with me as we talked about Boo being labeled autistic meant to me, to Boo and more importantly to those responsible for her care.

8. I am thankful for Jenn who always knows what to say and for Tia who thinks she doesn’t always know what to say but is the first one there to lift me up. For Becky taking Abby on the best play date of her life so Boo could attend a birthday party.

9. I am thankful that when Boo attended a birthday party (her FOURTH!!!) and when the party host asked if Boo was “a little autistic” I could reply, yes but that is like saying someone is a little pregnant. And I said it with a smile not with gritted teeth.

10. I am thankful that while I spent another birthday at CHB this time it was with Boo’s cardiologist who told me that while Boo still had a hole in her heart it would not require surgery. Just observation. She doesn’t have to go back to Cardiology for FIVE YEARS. Can I get a WOO HOO and a FREAKING THANK YOU!!!! for the best birthday present ever?

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.