30 Dec

I was trying to write a post about things not to say to a special needs parent, realizing it was based off of things said to me.  I haven’t finished it because it was turning into one of those ugly therapy moments where you get it all out, but now you’re depressed and want to shove a cookie in your face.

In thinking about it more, I wonder – is this a phenomenon that happens to those still looking for a diagnosis?  Is this one of those “fun” unique things that happens to only us?

Like being told we’re lucky our child doesn’t have autism?

Like being told to stop complaining so much about my child, she’ll be fine, but it’s rude to complain about our piddly problems in front of So and So, whose child has real issues?

Like being told “Well I could have told you she didn’t have that!  You were worrying for nothing!”

Like being told “You shouldn’t shortchange your child, you should be striving for independence!”

Like being told “It can’t be that bad!  She’s so happy!”

It’s like, somehow, not having a label people can relate to, it opens up the door for all sorts of weird criticism.

“Don’t worry.”

“I could have told you…”

“It’s not that bad…”

All things I heard more than once the first three years of dealing with Maura’s issues.  So much “helpful” advice – no wonder I ended up in therapy.  There I was, dealing with one of the  most stressful things you can deal with in life (plus a house move!) and I was being doubted.

I get it.  It’s human to wonder these things.  Even I’ve wondered once in a while, “Gee, maybe that person is just seeing things that aren’t there.”

But the difference is, I keep my big yap shut.  Because telling a worried mother to not whine so much, there are others with bigger issues – well, that just doesn’t help things. Especially when doctors don’t know.

The thing is, these people didn’t see what I was truly dealing with.  I kept a lot of it to myself.  I still do.  If you met me on the street today, you wouldn’t realize I was a big ball of anxiety ready to hurl itself into a vat of chocolate.  No, I’m really damned good at keeping a presentable front.  I smile my way through problems, cracking jokes about our situation, with my smiling child in tow.  Because I also know when I do let some things loose, it comes out in an incoherent heap of babble which is hard to take seriously.  And yet, it’s the most serious I’m being.

A friend of mine just had a child diagnosed with an issue after several months of trying to figure out what was going on.  She admitted to me she felt bad about saying they “finally” know, knowing that their journey has been a few months, while I’m at 9 years of not knowing.  Me?  I’m thrilled they know what’s going on, that it’s manageable, that they can move forward.

But it made me wonder…how different would our lives have been if Maura was born differently?

People new to us ask if Maura was born this way.  They’re usually fall-out-of-their-chair shocked to hear that no one noticed anything for the first 15 months.  For fifteen months, I had a normal child.  Or I was told that.  When she was six months, worry started creeping in.  At 13 months, they noticed she had “some” low muscle tone.  But nothing screamed “Holy crap, there is something wrong with this kid!”.   Even after that, for a couple more years, we still heard “Well, she could catch up by…”

I’ve seen others go through the process of diagnosis, or read about the beginnings of their journey.  There was always “And then we joined this group” and “Therapists coming to the house” and “by two months, he was receiving therapy”.

Fifteen months.

And we got jack all.

We had the generic “delay” label, which got my non-walking, non-talking, non-pincer grasping 16 month old 30 minutes of PT and 30 minutes of OT per week.  At 20 months, after doing all the evaluations, they realized that she was really far behind in speech, so added 30 minutes of that as well.  And then, while everyone else got home visits, I got the crappy 8:30 am Monday morning slot b/c Maura needed “so much” that it was the only time they could fit me in.

Hindsight has made me realized we were shafted.  Not on purpose.  We were just dealing with a “delay”, not something “serious” like autism or a syndrome.  I didn’t know any better, and there wasn’t a support group I could join to help me navigate through all this.  No one called my child disabled – not a doctor, not a therapist.  No one went there.  Instead, I got backlashed – She’ll be fine.  She doesn’t have a real issue like So and So’s child.  You’re making too much of it.  She’ll catch up.  Time and time again, I was undermined by people doubting that what I was going through was, in fact, a pretty big freaking deal. And they were vocal about it.

Funny enough, when Maura was diagnosed with epilepsy, people started taking things seriously.

Funny how a label can make a difference.

This is why people call hindsight a bitch.  The first four years of Maura’s life, I worried, and people patted my head and told me it would be okay.  It wasn’t okay.  I wasn’t okay.  They told me about those who had it worse, until one day, I was the one who had it worse.  They were certain that my good attitude and Maura’s happy personae somehow negated any seriousness to our situation.  It didn’t.

I spent three years in a haze of doubt and uncertainty. While I tried to figure out what my daughter needed, I was being told there was nothing wrong, that what was wrong wasn’t a big deal, that I shouldn’t complain, that I should just buck up like a good cupcake.

Would they have said that if that first test for Down’s Syndrome came back positive?

I doubt it.

Instead, after two weeks of worrying, when I revealed that we had Maura tested, I got “Well I could have told you that!”  the “DUH!” was implied.  It was my first “Geez, you’re making too much out of it, she’s FINE!”

To be honest – I wanted her to be fine.  I wanted that more than anything in the world.

But I already knew it wasn’t fine.  My blinders were off, thank God.  Because if I had listened to everyone else, it would have been even longer before Maura got into therapies.

I knew in my heart when Maura was six months that something wasn’t quite right, but wasn’t ready to admit it, and was willing to embrace the idea of the “late bloomer” with her.  Looking back now, at pictures and videos, I see all she couldn’t do, how she really couldn’t sit up well, even at a year old, how that time when we thought she might have had a seizure and were told was a delayed startle reflex (at like age two) – that was probably a seizure. I was told one day that I was the expert on my child, and the next, told I was blowing things out of proportion.

That she’d be fine.

And then people caught up.  It only took a grand mal seizure on horseback and a diagnosis of epilepsy to get everyone on board.

It took a label people could understand and embrace.

How different would our lives have been if we had a label early on?  If I didn’t have to spend so much energy defending my daughter’s special needs to people?  If I could have stated “Yes, my daughter has special needs!” early on.  If I had a disability group to show support?  If I didn’t feel like a fraud at times with my happy toddler who *might* catch up in the world of special needs families?  Or in the world in general?  It took me years to be able to call Maura special needs, to use the term disabled with her – not because I was in denial over her issues – but because no one else seemed to believe it.  No one else considered it, no one else accepted it.  I had people shaming me when I did try to put my child in that category.  We weren’t as deserving of it as others.

It’s a wonder I didn’t crack under all the pressure sooner.

Nine years after that first “there’s something not right here” mention, I’m in a different space.  Literally and figuratively.  I’ve gone from being doubted to being called a bit of an expert.  Now I’m the one telling people Maura will be fine – though my definition of “fine” has changed.  I’ve learned to share better what we’ve been through, if only to help those who are in a boat similar to the one we found ourselves in nine years ago.

But I’ve learned it’s all an evolving process, this journey we’re on.  I spend so much time just taking it day by day, getting through this week or that appointment, losing two days to anxiety and sleeplessness when Maura does get sick, that one day, I stop and look back and go “Wow.”

Which is why I’m here, today, talking about how we were treated 7, 8, 9 years ago.

Hindsight.  She’s a right bitch she is.


22 Responses to “Hindsight”

  1. Gretchen December 30, 2013 at 5:16 pm #

    Such a familiar experience. After knowing something was not right, but being told ‘he’s a boy–they do things differently’ and ‘he’s your third child, you don’t spend the time with him that you did on your first’ and many other useless things, he finally got an autism diagnosis at nearly three. I thought it would be the end of it, but I still got a lot of, ‘well, in my day, we didn’t have such things’ and ‘he’s not anything like Rain Man’ for the next couple of years. Even though that’s finally died down, I still catch flack about the girls being in theatre, gymnastics, scouts and dance while his after school activities are PT, OT and speech.

    People’s board range of uninformed opinions never fail to irritate me. You have my empathy.

  2. Deborah the Closet Monster December 30, 2013 at 5:32 pm #

    Man, but this makes my heart ache to read . . .

    I don’t think I realized how callous some of my own words sounded until my mom passed away and people started saying things like, “Oh, at least it was just your mom! It could have been your son.” The shock of hearing such things made me start paying close attention to all the horrible things people say in an effort to be kind or uplifting, trying to heal (or give not necessarily great perspective) in ways that ultimately end up healing nothing and actually hurting.

    I’ve caught myself saying inadvertently horrid things many times in the years since, but I try to catch myself and say, “I’m sorry.” Sometimes–often–it’s much better to say a few words than say many words that just add to agony.

    I’m sorry.

  3. catalina December 30, 2013 at 6:18 pm #

    this is beautifully written and heartbreaking. you already know it, but you and Maura deserve and deserved much better from your health care professionals and from the people quoted with whom you shared your story. also the ‘buck up’ attitude makes me pretty mad – i don’t think your job as a mom includes anything about making everyone feel warm and fuzzy about your struggles. grrrrr. For what it’s worth, i think you are all the more amazing a mom for keeping your ‘blinders off’ and seeking help even when it was so difficult. ❤

    • catalina December 30, 2013 at 6:19 pm #

      * to clarify, i meant the attitude people gave you about you needing to ‘buck up’ – not your own amazing positive yet realist attitude.

  4. teresamcnally December 30, 2013 at 6:39 pm #

    Such honesty, thank you



    • phoebz4 January 2, 2014 at 12:43 am #

      Teresa – the first time I felt like a label truly didn’t matter with Maura was at Grosvenor. It was very refreshing!

      • teresamcnally January 6, 2014 at 4:54 pm #

        I think about this often. Your blog is truly inspiring . It gives a very very clear picture from a parent’s perspective . Keep going. Love to all . Back to school today. All Christmas trees down!

      • phoebz4 January 6, 2014 at 6:30 pm #

        I need the boys to get the boxes out for me so I can start putting Christmas away. But it was back to school as well! Happy day!

  5. Siobhan December 30, 2013 at 6:52 pm #

    Oh gosh Phoebe, words fail me at this moment after reading your blog;dentifying with early memories and experiences. The feeling of isolation, not belonging to any support group intensifies all of the above undermining comments. If only we’d known what each of us were going through at the time the support would have help massively. Not wishing to insult or take away from any person with Down Syndrome but because there seems to be a strong group support associated with DS I have found myself quite envious, often declaring that i would title my first book ‘I wish my child had DS’ 🙂

    • phoebz4 January 2, 2014 at 12:42 am #

      That’s hilarious! But with Pierce Brosnan helping out Down Syndrome Ireland, well, I wouldn’t mind Maura having DS either 😉

  6. saracvt December 30, 2013 at 10:39 pm #

    The part about thinking you had a neurotypical (like me, you’d probably never heard that word before) child for fifteen months really hit me. We thought the same with ours until about eight months when we noticed Olivia was developing a bit slower than Maddy. At a year, she still couldn’t sit u

  7. saracvt December 30, 2013 at 10:54 pm #

    (Hey!) up by herself, so we knew it wasn’t just us and took her in to be evaluated. On a whim, because we were almost 100% certain Maddy was developing normally, we had her tested too, on the theory that she was here, and wouldn’t we look silly if a problem started later and we hadn’t done it.

    Well, Olivia, as expected, tested massively developmentally delayed but to our giant surprise Maddy was a bit too. They both qualified for weekly therapy and at age two and some change started early intervention schooling. But at that point, we all thought they’d eventually catch up to their peers with therapy. No one had any idea of the storm that was coming.

    And I remember at an infant dedication at my church, much like Maura’s Confirmation, but Protestant; where the parents introduce their newborns to the congregation and pledge to raise them in a godly house–I suddenly broke down. Cried a waterfall. Sara wept.

    Because we had done the same thing, and when we stood on that stage with two sweet little baby girls, one in pink and one in green, we had imagined their futures. But we didn’t imagine these futures.

    So I looked at those parents standing there beaming and thought, Oh, I hope those children are what you think they are going to be. And I hope you are strong enough for what they will be.

    And I cried.

  8. Joy M. Newcom December 30, 2013 at 11:49 pm #

    As an “old” mom (not really old, but been at it as a mom of a special needs son who is now 22), I can relate to much of what you have written. But I am reading it from the fog of the future. So much of what we lived through – which you have articulated from your own life story in such a beautiful way – is soooo distant. All those stupid things people said and all the disconnect to what we were living at that time. Brace for post-age 18 life. It’s a bizarre land of … well, I don’t have words for it yet. I just know it’s different. More lonely without teachers and teams of people who love to see children mature. There are new teams of people, sure. But they think differently about life.

    Anyway, we had a 50/50 situation: some things that COULD be seen (i.e., physical anomalies that often are stand-alone like spina bifida and an imperforate anus) but something else that could not be determined (i.e., the classic “developmental delay likely caused by a chromosomal abnormality”). When Mayo Clinic went looking (blood sent off the day of our son’s birth), they couldn’t find anything. When they sent skin cells to study months later, still nothing. Then, more than a decade later, when Mayo genetics docs, were motivated to look again (Them: “Would you mind?” We: “Sure, knock yourselves out.”), they went three rounds before finding something in a molecular study. It was like finding the proverbial needle in a haystack simply because someone had a “hunch” to look in the right spot (i.e., spot = molecular pattern in a chromosome pairing?). But here’s the kicker: They found something that had never been documented before. Not in their database nor in any database for which they share information. So, we were able to be told the clinical reason but without name or causation or explanation. It just was/is. Something they could point to it as our “See, we knew it.” Now, an extremely large file has been sitting on the very messy desk of some annoyingly absentminded genetics doc (i.e., gets our son’s name WRONG) who said he was going to write some big deal article about what that team of docs found all those years ago, the year our son was beginning the social hell that is middle school.

    What does it mean now? The same thing it did then: nothing. We, my husband and I, remain the authorities on him. We always will. This “knowing aloneness” is a bit better, I guess. We can point to our “See, we knew it” when we need to. We have a tangible report that validates what we knew in our hearts. The authority of it does help shut people up, I guess. But maybe we could have shut them up before too. Maybe we could have claimed it – a chromosomal abnormality – and just pointed to it anyway. After all, we ALL knew. The paper report is the only difference. But practically speaking, it changed NOTHING about our son’s medical care, social opportunities, emotional well being, etc. But, yes, we can point to a day when when “knew.” That day where we got another one of those air knocked out of us moments that special needs parents know well. The kind that comes with the revelation of something we already knew to be true, yet the news acts as a sucker punch making certain that hope gets kicked to the pavement. In that sense, the knowing becomes a hope killer. But it is a necessary death.

    Hope has a half-life. Fortunately, there is more than one brand of hope.

    I guess I just wanted you to know that I am living your converse experience in a way but, like you, I will never really know the difference our knowing has made. I can’t offer a name for non-physical “stuff” he has. There is a long string of words that point to a chromosomal “address” in his 22nd chromosome where there is a deletion of an interstitial portion of space between his DNA coding. He is missing space in that microscopic portion of chromosome coding. Who knew you can miss space or have alignment “off”? My version of not knowing has allowed me to court a brand of hope that makes it easier to tell the rest of the world to shut the h8!! up. I wish that hope for you. Thanks for continuing to share your journey. I need to be reminded to walk back into our foggy past every once-in-a-while. It helps me measure the density of the haze we continue to walk through.

    Sorry this lengthy … apparently, it was a long walk.

  9. Siobhan December 31, 2013 at 3:08 am #

    What fantastic reading everyone. Great insight!

  10. franhunne4u December 31, 2013 at 6:37 am #

    May I offer a label? Name it Maura’s disease. There seems to be no other case like Maura around which your “experts” have heard of.

    Maybe it is just a single case of chromosomal difference, one that occurs now and then – if you do not “believe” in Evolution – well hard to explain.

    There are diseases so rare in this world that companies never try to develop a cure for those – as the rarity would not pay off for the research let alone make big profits. Maybe it is so seldom a disease so your experts are excused for not knowing.

    YOU do not need a label to deal with your child, you just do it. I understand that the world outside your family might have that need – but would you really profit? I doubt it Even a diagnosis would not be fully comprehended by those who have never known a case and do not connect a meaning with the name.

    • phoebz4 January 2, 2014 at 12:41 am #

      We call it Sherlock Syndrome, lol!

      But while I’m not as hung up about labels, lots of places are. Like Early Intervention programs, and support groups. Maybe this is more of an American thing though, b/c when I got to Ireland, I didn’t find the “label” as necessary.

  11. Sparrowgrass December 31, 2013 at 10:06 am #

    I’ve nominated you for theSunshine award:) for details see my blog

  12. Darcy Pennington Arnold December 31, 2013 at 11:56 am #

    It’s amazing to me to realize that parents ALWAYS know before anyone else that something is “wrong”! My granddaughter (who is 8) was diagnosed with DS at the moment of her birth. Okay, that was easy. Two years later when my grandson was born, I spent a month with my daughter helping take care of my granddaughter.

    After the first 48 hours, I started saying “something’s not right”. He cried non-stop, could not be comforted, no matter that my daughter had read ‘The Happiest Child On the Block’. This continued until the point where my granddaughter’s OT suggested my grandson also have it because he was not learning to crawl. I was told “you’re looking for something because of your granddaughter”. NO! I see because I am a mother & grandmother!!

    Today, at 6 he’s finally being tested for ADHD. Don’t tell a parent or grandparent they don’t know what they’re talking about. We spend more time with our darlings than anyone else, so of course we know!

    God Bless You! It is so amazing how strong families are of children with special needs. The ability to “act as if” things are not falling apart inside our heads. When I was in therapy, after falling totally apart, my therapist gave me some of the most helpful information I have been given to date. She explained that people who “fall completely apart” have just been too strong for too long. That God gives our brain the ability to “fall apart” in order to protect us from something more drastic. So……be gentle with yourself, remember, it’s okay to fall apart, it’s a gift from the heavens.

    Have a blessed New Year……………..we’re all here with you!!!!

  13. bizigal December 31, 2013 at 1:42 pm #

    Good grief! I hear you! Unless you walk the walk or talk the talk you can’t really give an opinion. That is why I try to ignore those people. In fact, I don’t even talk about my teenage kidlet unless I am talking to another parent of a child who learns differently. People are rude in this sense. It is just human nature. They have to overcompensate. It is a nervous reaction. Take care!

  14. Lori-Anne January 2, 2014 at 2:38 am #

    This is why I read your blog, Phoebe. Thank-you for this post. It really touched me. My DS is 5 but about 1.5 years behind in various delayment areas. (gross motor…he couldn’t walk even holding onto furniture until he was 2…and problem solving and speech) I’ve known something wasn’t “right” for 2 years now, but no one would listen to me until last year. And It’s been only one whole year since a pediatrician took interest in him, but since none of her tests are showing anything she has now stopped looking and is passing us off to others. (we’re on a wait list for genetic testing) so it hasn’t been as bad as some moms. But I get comments like those a lot too.

    Actually, at the school Christmas concert, I happened to be seated beside a Special Education teacher at our high school. I pointed out my son, who was performing with his preschool class, and she said to me, “well, he doesn’t look delayed!” I just smiled and bit my tongue from saying, “thanks…but you don’t know his issues…” *sigh*

    Sometimes we say dumb things because we don’t understand, or because we honestly think we’re being helpful.

    I worry about hindsight, and about us getting the help my DS needs before it becomes a “why didn’t you come see us two years ago?” or “he really should’ve started therapy before he turned five, now he doesn’t qualify.” ARGH! It makes me angry!

    Maybe he WILL be “fine” and one day catch up…but maybe he won’t…and maybe we won’t know why either. I’m so glad that I have found your blog (and your FB group) and can feel less alone. (even though our journeys are different)

  15. Cair January 6, 2014 at 5:05 pm #

    I’m sorry for those early years you shared with Maura. I remember when I talked with a friend who had 6-month old twins, and she told me that one of them met all the milestones later than the other, and I flippantly said I guessed somebody had to be last. She knew, even then, that something wasn’t right with her baby and I was flippant. We all so want all those babies to be fine, and I guess we hope that our wishing it will make it so. This year I will try to listen more and support more.

    “Now I’m the one telling people Maura will be fine – though my definition of “fine” has changed.” This made me happy. I know that Maura is a challenge and you are often concerned about one thing or another with her. Yet at the same time she really does sound like a pretty darn delightful child. I think you’re right. She will be fine. Fine in her own way.

  16. Rosanne c Romero January 12, 2014 at 7:07 am #

    People say the most inane things. I have MS and have had it for 27 years and people say all sorts of stupid things like “you’re not feeling well AGAIN?” or “There’s no cure. But it’s not fatal so you should be ok”. Or “God heals those who belong to Him”. Which means I’m out?

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