Category Archives: empathy

What happens…

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.

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.

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?

Dear Abby

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Dear Abby,

When I had you I was terrified. The hospital nurses actually wrote, failure to bond in our chart. I was so sure I was going to fail you. Or worse, hurt you. You were an emergency c-section because (and I quote a doctor here) my body wasn’t meant to survive childbirth. I thought that meant I wasn’t supposed to be a mom.

In all honesty you were all I needed. You taught me how to be a mom. Not a perfect mom by any means. I did not think I had the love, patience or endurance for another child. You wanted a little sister so badly. You even had an imaginary friend whose name was simply “imaginary baby sister”.

Then there was Boo. From the beginning you at just five years old were my rock. You, my dear sweet child, showed me that I was strong enough to handle two daughters. You, my sarcastic truth-teller were there to keep things in perspective. You, my great educator taught others how to care for Boo.

The time you told Dawn that Boo couldn’t have peanut butter because she was allergic to dairy. The time you told a teacher that Boo was perfect, she was just in the hospital. When you taught a friend that being having a sister with a “funny pattern in her brain” just means that your sister takes a little longer to learn things. The countless times you practiced “I LOVE YOU” with Boo never knowing that is my secret desire for her to tell us she loves us.

You, Abby, are my hero. I wish I had your grace, your patience and your sense of self. You are confident in ways I can only strive to be at 40+ years. Your imagination astounds me. You are so brave, trying things that would normally terrify me. You are your father in the ways that make me love him. And in the ways that make me want to strangle him. You have an old-world soul mixed with a new-world outlook on life. You are me in the ways you are picky about eating food and in the way your sense of humor aligns with my own. You are so beautiful in your smile, your laughter and yes, your sarcasm.

On Saturday morning, I awoke exhausted. I lay in bed and listened to Boo over the monitor at 6:30 am. She was gleefully calling your name. As I ~~got out~~ pretended to get out of bed to get her I heard another voice. Yours. You entered her room and quietly said, “I’m here”. You then proceeded to take her out to the living room. You got her IPAD and gave me another hour of semi-rest. You got her muffins and only called to me when her diaper exploded.

Mom I’ll do a lot of things but I won’t take care of that!

That afternoon you received your first phone call from a classmate. You went on your first ever sleep over where I did not know the parent. I didn’t sleep that night for another reason. I was worried of course. But also marveling over how quickly a decade has gone by. How the little baby I was terrified of now completes my heart in a way I never imagined. The house is empty without your presence. I am astounded by how you have grown into such a sweet young girl soon to be tween. The excitement in your voice when you called to say good night. This is the girl you would be, maybe, if you didn’t have to tailor your life to your sister. Not that you complain, ever. But I promise you, I know the sacrifices you make for Boo. That you cannot join girl scouts, after school activities or miss birthday parties because we have Boo-centered appointments.

So thank you, my sweet Abigail. For being you. For giving me an extra hour of dozing. For giving me peace. For sharing your dreams. For giving Boo your unquestioning love. For just being your awesome self.

Keep living the dream, my Abby. When you obtain world domination this world will be a better place. I simply cannot wait to see the woman you will become.

Love,
Mom

PS you are still not getting a pony

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.

My best dream ever….

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When I was little I had a very active imagination. My parents would put me to bed and I would spend hours imagining a life other than the one I was currently living. Sometimes I was a princess, sometimes I was a warrior and sometimes I was just a girl living a different life.

Each night it was the same. I would wait until Mom put out the light and close the door and I would line up my stuffed animals all around me. I would begin to imagine this fabulous life where everyone was equal and no one was sad.

As a child I did not know that prejudice existed. That children were born with different needs and talents. That adults would look at a child and judge. The parent and the child would be judged and found lacking. That you would be judged for who you loved, your gender or your skin color.

As an adult I wore blinders. I saw those who were disabled but did not see past their disability. I saw children who appeared disobedient and thought not like mine. I admit to not seeing a person’s color but not standing up to those who did. I lived my life on my terms, never seeing how we are all intertwined.

Then I had Bridget and my ideals evolved. A person who was a wallflower became an advocate. It took Kristi’s Our Land to put my dreams in perspective. She dreamed of a world of empathy and wonder. One where we looked at others with the imagination of a child. Not with the jaundiced vision of adulthood. A land where it would matter that our children had a disability only to make people stop and see the wonder that is this life we live.

My best dream ever? It is a dream where Abby & Boo’s story show the world what wonder and empathy look like. A dream where we judge others like we did back in the sandbox. Not by color, race, creed or gender. But with the opening line:

Do you want to be my friend?

My best dream ever is the one where our children never lose their empathy. That they continue to look at the rain with wonder. That our children make friends first and judgments last. A world where we shared the joys, the heartache and the triumphs of living a life full of blessings.

The cool thing is? My dream is coming true. I was astounded this week when not once or twice I was stopped on the street and told that this blog affected them. In a positive way. When someone sees Boo and looks with kindness and not judgement. That some parent knows they are not alone. A world when we are allowed to break and heal with someone there to help and not to judge. A life where others view Boo through Abby’s eyes.

My best dream ever is the one that never ends. A life where Boo shows others how to live in a world of empathy and wonder. Thanks for being with me on my journey to make my dream come true.

Oh and if you haven’t checked out Kristi’s Our Land yet I recommend the trip. It’s not about living with a disabled child. It is about living your life to be better. There are posts about body image, friendships and not judging a person (or yourself) before you meet them. Kristi is the blogging equivalent of Oprah’s AHA moment.

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?