The Bears in the Park: Anxiety and the Autism Parent

????????????????????“Worry is the thief of joy.” – Unknown

I read with interest the other day a post by psychiatrist Dr. Gail Saltz, “This Is You on Stress.”  Being stressed out all the time, I’m becoming increasingly aware of its effects.  Dr. Saltz says stress is an evolutionary thing, a fight or flight response triggered by a perceived danger.  In dangerous situations – such as the possibility of encountering bears in a park- it keeps us aware and can save our lives.  The problem, she says, is when you are removed from the danger but the fight or flight instinct is still going.  That kind of anxiety is harmful.  She goes on to suggest some strategies for breaking the cycle of unhelpful stress when danger isn’t nearby. I thought about that for a while and how to use those strategies to stop stressing and calm down.   I thought about those bears in the park.

And that’s when I realized.  It’s no wonder parents of severely autistic children are increasingly being diagnosed with anxiety disorders, PTSD, depression, etc.  It’s not because of their children.  No, our children give us just as much joy as any others.  It’s because there is rarely a time when you aren’t in the park looking around for all those bears.

What and who are these bears?  There are many.  Elopement, bullying, failure of school districts to provide an appropriate IEP, medical and dental appointments, unfamiliar situations, loud noises, lack of autism awareness, lack of autism acceptance, loved ones who don’t get it, judgmental stares and comments from strangers, inaccessibility from grocery store carts to Disney World, respite care, insurance battles, lack of appropriate housing for autistic adults –and on and on.

So we rarely leave that park.   And we stand – fight or flight response at the ready – clutching the hands of our children all the time.  While trying to live our lives in all the necessary ways.  Meeting the needs of other children.  Nurturing our marriages.  Paying bills.  Working.  Caring for older family members.  Taking care of ourselves – which, like this list, always comes last.  But we do all of these things while anxiously looking around, listening, and facing those bears when we encounter them.

I’d like to follow Dr. Saltz’s suggestions.  I’d like to try meditation, thinking myself calm, and reminding myself that I’m out the situation.  Except I’m not.  I don’t have the luxury of letting down my guard.  Because if I do, the bears are still there.  My child will not receive an appropriate education.  He may be traumatized by people not trained to work with autistic children.  Someone might forget to latch a door.  A door within minutes of busy intersections and bodies of water.  He might be treated as a disorder and not a child.  No, the only time I can relax is when he is safe in bed and the house alarm engaged.  Even then fears of my own mortality (who will take care of him?), his education, his health (feeding issues), and his future haunt me in those witching hours of worry.

The problem is these fears aren’t unjustified.  My anxiety isn’t occurring in the absence of danger.  These dangers are real.  Because this world is not ready to welcome my son.  A son who will one day outlive me.  A son whom I fear will not – if needed – be cared for by those with good hearts and a desire to allow him as much independence as he is able.  A child whom – in the wee hours of the night – I lie awake envisioning as an old man.  An old man – perhaps with no family of his own – lying in a bed and taking his last breaths with no one to hold his hand.

Yes, those bears are all around me.

I don’t want stress to win, but it’s ever present.  It steals from me sleep, laughter, and peace.  Joy?  It’s fleeting.  Found in bits and snatches – and always bestowed to me by my children.  Yes, it’s there.  But it’s often stolen by the thieves of anxiety and fear.

And in my darkest moments, I fear that lack of joy is turning me into a bear.  Someone who sometimes fails to appreciate the little things.  Someone who will fail to pass on joy to my children – who deserve that in their mother.

Some talk about a national autism plan.  Do we need one?  Yes.  Should it resemble any of the depressing and misleading suggestions we’ve heard so far?   No.  But we must begin to address the needs of children, adults, and families like mine.  We must begin to teach our citizens, our schools, our medical personnel, and our law enforcement how to interact with autistic persons.  We must learn new ways to teach, engage, employ, and live amongst those who experience the world differently.  And we must begin to plan for the futures of the most disabled on the spectrum.

Until then, I remain perpetually on watch for bears.

If you liked this post, you might also enjoy “It’s Not Personal: A Special Needs Parent’s Apology to Everyone She’s Going to Upset.”

 

 

Say the Word: On Delaying an Autism Diagnosis

autismwordSomewhere out there — right now — is a parent who just heard something she didn’t like. Someone who loves or works with her child suggested her precious, perfect baby may have a form of autism spectrum disorder.

There are signs. Her child is most likely developmentally delayed in significant ways. He may have walked late, often skipping crawling altogether. He may lack the fine motor skills other same-age peers have already mastered. Physically, he may lack the strength, balance, and coordination to do the typical things young children do, such as ride a tricycle, jump, run, or hold on tight when taken for a ride on daddy’s back. Perhaps most significant is a delay in speech. He may have developed a few words and lost them, or he may have never made any kind of vocalizations. In addition to not speaking, he may not understand the speech of others. And, if his name is called, he may not consistently respond — if he responds at all.

In addition to developmental delays, he probably has exhibited some quirky behaviors. He may not play with toys appropriately, preferring spinning, lining up items, or flicking strings or non-toy objects. He may not be able to tolerate certain textures, touches, sounds, or lighting. He may throw sudden tantrums that go far beyond any prior conceptions of the word. He may appear to be present physically — but live in a world of his own. Or he may not have many developmental needs at all, yet be unable to connect to others, read social situations, or tolerate change of any kind.

And though his mother probably already noticed these delays and odd behaviors, she is angered when the subject of autism inevitably comes up. She thinks she has good reason.  Continued on HuffPost Parents…

Flappiness Is on the Huffington Post!

I submitted this to Huffington Post — and then decided they must not have liked it, jumped the gun, and posted it here a few days later.  Today, HuffPostParents published it!  (Which was a real thrill.  It’s been on my Writer Bucket List.)  So -just  in case you missed/understandably ignored my email – here’s my latest.  ;)

 

Dear Friend Whom My Autistic Child Just Rebuffed

callumtackleI know.  I saw.  You, friendly person that you are, walked up to my autistic child in public and tried to say hello.  And he got really, really upset with you.  I saw your concern.  Felt your embarrassment.  Knew you never meant to upset him.

When I see you, you ask about him.  When you’ve met him before, you always make a point of speaking directly to him – even when it seems he’s not paying attention.  You’ve even had really positive interactions with him in the past.  You did everything right.  You didn’t go rushing up or speak too loud to him.  You didn’t put your hands on him without being welcomed to do so by him.  You follow me on Facebook, read about the cute things he does, and celebrate his successes.  You’re a good friend and a great cheerleader.  I appreciate you.

And because of that, I don’t want your apology for “upsetting” him.  That’s because you didn’t.  It’s likely several things did, but it wasn’t you.  He was just overwhelmed a bit by the world – new sounds, sights, and experiences.  He was busy trying to process all of those when you happened to innocently walk up and try to interact.  For whatever reason, that’s when his pot boiled over.

He wasn’t judging you, disliking you, or even declaring how he feels about you in the future.  He was simply over capacity and expressed it the only way he knows how to – with a big fat “no more right now.”  Only he doesn’t yet have those words.  He isn’t able to convey exactly what was too much.  He meant to say, “I have had enough.”  But it wasn’t you.  It just seemed like it.  And I could tell by your red face that it felt like it too.

So, I’m begging you.  Please don’t slink away and give up on getting to know him.  Please don’t feel that he just doesn’t like you.  Please don’t feel like you did anything wrong.  He may have been overwhelmed emotionally and sensory-wise, but his mind is quick.  He knows the difference between someone who is good to him and someone who is not.  If you continue to gently engage with him when you see him, he’ll learn that you’re not to be feared –and you’ll learn there is nothing to fear from reaching out to him.  Before you know it, you’ll have a little buddy who expands your world – just as you will expand his.

I want you to know that your efforts to engage with my child are beautiful to me.  Too many people are afraid to try – afraid to “upset” him.  Afraid to simply ask what’s the best way to get to know him.  But you?  You put yourself out there and sent a message to our family, to him, and everyone in the immediate area – that he is worth knowing.  Not everyone knows that.  But you do.

And that’s why I want so very badly for him to get to know you.  Because clearly you are worth knowing too.

 

 

 

 

 

 

Prayer for the IEP

praying-hands-in-close-view_2247878Lord, this day means so very much.  This is the day decisions are made that will impact this special needs child’s life.  Some of those decisions will be good.  We might fail in others.  We will keep trying.  We will keep believing. And we will continue advocating. Today, we ask for:

 Calm – so that we may hear one another and communicate effectively.

Truth – for, without it, we cannot set a correct course.

Focus – so that we may avoid distractions and meet our goal.

Compassion – to acknowledge the needs of others.

Wisdom – to recognize when we need help and/or more information.

Strength – so that we may speak up for what is right.

Flexibility – to seek solutions that will benefit – first and foremost – the child.

Resolve – to carry out the plan we make, even when it becomes inconvenient.

ieptableAnd most of all…

Faith – in this child and our belief that he can learn and that we will make a difference.

May our minds and hearts remain open today –and we remember to place this child’s needs ahead of our own.

In this we pray.  Amen.

Hear Me Roar: Inspirational Songs for IEPs (a Playlist)

noteThanks so much to my wonderful followers on Facebook for contributing to this playlist.  There are some great suggestions — including several I’d never heard before.  Play this in the days leading up to your child’s IEP, mediation, resolution, etc. — and go advocate for your child!

Let me know if you think of any songs I should add.  :)

It’s Not Personal: A Special Needs Parent’s Apology to Everyone She’s Going to Upset

I'msorryDear [             ]:

I’m sorry.

I’m sorry to have ruined your day, angered you, or caused your supervisor to watch you closely.  I know what bad days, frustration, and job pressures feel like.  It wasn’t my intention to cause you problems.  It may not feel like that to you, but it’s true.

I know that –when you aren’t busy being the person I had to get unpleasant with –you’re probably a very nice person.  I’m sure that your family loves you, friends think you’re wonderful, and you’re an active church member.  If circumstances were different, we might be friends.

But the great person whom I’m sure you are intersected with a road I’m traveling to meet the needs of my special needs child.  To put it simply – you got in my way.  In some way significant to my child, you failed to do your job.  Do I think that makes you evil?  No, I think that makes you human.  But the issue isn’t how I feel about you.  The issue is a vulnerable little boy who cannot speak for himself – my vulnerable little boy.

There are a lot of reasons why you might fail to do right by my special needs child.  You may be overworked.  You may not have enough resources.  Your boss may be a jerk—or clueless.  You might not have the knowledge or time to do what is being asked of you.  Most likely, you are simply a part of an educational system that has been broken for so long no one knows what it is supposed to look like when it works.  Most likely, you probably already know that – but fear of rocking the boat or drawing parental attention caused you to go along with what you knew to be wrong.  You may feel helpless about that and wish it were different.  I’ll let you in on a secret – I feel the same way.

But feelings and wishes – over truth and action- are luxuries I don’t have.  I can’t blame it on the system, lack of money, or others and go about my day.  You see, this child is mine.  And you and I know all too well who will step forward to advocate for my child if I don’t – no one.  Not really.  They’ll think he’s adorable, sign him up for an hour of therapy or so a week, and set goals for him low enough for him to achieve in a year. They’ll finish his IEP in 15 minutes and tell themselves they’ve done their jobs.

But it won’t keep them up at night.  It won’t drive them to learn and do more.  They won’t feel a sense of panic as precious time is lost.  It won’t incite their indignation.  It won’t be their child, so…

It won’t be personal.

But his well-being is my purpose for being here.  Having made the decision to have and raise a child, he shot straight to the top of my priority list – even if he isn’t at the top of yours or the system you work for.  If you fail to make a call, provide a service, determine and meet his needs, allow him to be under-challenged, ignore his IEP, traumatize him in some way, or do him any kind of educational or moral injustice – then it’s my job to be there, draw attention to it, and make it right.

So, unfortunately, that’s where your path and my path have crossed.  I’m sympathetic to whatever caused you to be here.  But my job is incompatible with looking the other way while you don’t do yours.   No matter what the reason.  It’s just that black and white – even if it isn’t completely your fault.

This isn’t going to change anything.  I’m still going to be there.  I’ll still be watching closely.  I’ll be polite, but I will be that parent.  The parent who writes the letters, makes the phone calls, requests the records, researches the issue, analyzes the data, knows the law, and makes it her mission to know more about my child’s disability and issues than you or anyone you work with.  Which means there may come a time when his needs and rights are in conflict with your convenience, budget, or the status quo.  Again, I’m sorry about that.

But I want you to know– it’s not personal.

Update:  This post has touched a nerve with some folks who may not be familiar with my writing or blog.  This post is not anti-teacher.  Teachers aren’t usually the problem.  I know.  I AM a teacher.  Most are wonderful, including my son’s.  I’m talking today about the folks who make the real decisions that affect special needs students and their classrooms.  And, while I would never be rude with anyone, I can and will do whatever is necessary-within the law – to ensure my son receives what he has a right to under federal law. 

Losing My Convictions

buttingheadsNot so very long ago, I knew what I thought about things. I could debate them point by point with relative ease and felt comfortable with the conclusions I reached. I identified myself as a libertarian-leaning Republican – conservative both fiscally and in terms of defense, but socially liberal. Central to my thinking is the sincere belief that most things the government undertakes turn out to be disasters. I am suspicious of decisions made by committees and generally believe the fewer cooks in the kitchen the better. And – raised by a lawyer – I’m equally suspicious of new laws and constitutional amendments, believing them to often be the result of emotional reactions rather than well-considered policy.

 But convictions are a funny thing. Sometimes all it takes to shake up your belief system is a personal experience with what you didn’t know before. The fundamentalist Christian mother who finds herself loving a gay child. The pro-life couple whose amniocentesis shows a baby whose genetics are incompatible with life. The anti-marijuana legalization police officer who is racked with pain from bone cancer and nausea from chemo. The fiscally liberal woman who finds taxes and regulations strangling her small business. Life is like that sometimes, and irony mocks us.

 Five years ago, I had many convictions. One of them was a sincere belief that the Department of Education was the worst thing to ever happen to U.S. Education. My belief in that wasn’t based merely on my party’s stance. Unlike a lot a politicians, I actually graduated from a college of education. I have been trained in ridiculous theories, participated in wastes of expenditure, and seen firsthand the effects of an educational culture that values test scores over knowledge. I still believe that U.S. educational policy is absurd and that each new generation is just a bit more ignorant than their parents. It’s why I send my daughter to a private school, and I won’t apologize for that. But now I find myself unsure of my prior held convictions – and that’s because of Callum.

 You see, I now know that I’m a hypocrite. I’m a hypocrite because I am now depending upon the Department of Education and federal law to protect my child from a substandard education. If it were not for the IDEA, my son would not have any of what he has now nor would he have anything I am fighting for him to receive. If it were not for state oversight, school districts would not provide for his special needs. IDEA safeguards are the only big sticks available for me to carry as I walk softly through the IEP battleground. Now I find myself dependent upon the very agency I generally abhor. So, I’m a walking, talking hypocrite. And that has a lot of implications for many of my core beliefs.

 What else do I hold to be true – until I have walked in the shoes of one directly affected by it? What other political philosophies are incompatible with the needs of other human beings just like me? How can I gratefully accept that which I have decried – or voted against?

 Becoming the mother of a special needs child didn’t just shake up my world; it shook up my mind. I am not lost so much as I am now aware of everything I don’t know. Suspicious of every viewpoint I hear. And for a very simple reason – most people know not of what they speak. Not really know. They’ve heard about it. They’ve read about it. They imagine how they would feel if it were them. They compare it to something they know that isn’t entirely (or at all) related. And they espouse – and vote –from the comfort of their unaffected lives.

 That realization has left me without many convictions, cast adrift in a sea of political parties who don’t represent me at all. Reading social media commentary from friends and family who don’t yet realize the ease of becoming a hypocrite as well – when life runs up and knocks them over on the playground. People who haven’t yet had to fight for the well being of another. Who haven’t been desperate, shunned, violated, sick, divorced, disabled, broke, or any of the myriad occurrences that can shake up one’s world. People who weed their friends list based upon political parties or religious views. People who don’t know – or yet know – what they would really think if it happened to them.

 I see very little of the world in black and white these days. It’s all a bunch of varying shades of gray. Which makes it hard to wholly embrace any viewpoints at all or cheer any platform. Instead my mind immediately goes to “What if it was Bronwyn? What if it was Callum?” And then I have my answer., at least for me. The problem is that no political party exists whose mission statement is to do unto others as they would have done unto them. And none of them will admit “Clearly, what we thought would work didn’t. Let’s start over.” Which is exactly what we need with regard to education, health care, taxes, drugs, and so much more. Until that happens, color me unimpressed and label me an independent.

 In the meantime, World, please just…be kind to one another in how we define our problems. It’s rough out there.

“I don’t believe in superstars
Organic food and foreign cars
I don’t believe the price of gold
The certainty of growing old
That right is right and left is wrong
That north and south can’t get along
That east is east and west is west
And bein’ first is always best
But I believe in love
I believe in babies
I believe in mom and dad
And I believe in you.”

-Don Williams, “I Believe in Love

 

 

Why Autism Families Are So Angry with Disney

walt-disney-castle-20299809Life for an autistic child is full of no’s.

No, those children don’t want to play with you.

No, you won’t be able to tolerate this restaurant, theater, store, etc.

No, we can’t/won’t/don’t service kids like you.

No. No. No.

As parents of severely autistic children, we hear a lot of no’s as well. You get so used to all the no’s that they cease to surprise you anymore. You expect them. You are prepared to fight them, but lose a lot. And you steel your heart for many disappointments.

Like, for example, the disappointment you feel when your child’s school pictures arrive — and it’s evident the photographer made no effort to spend the extra time necessary to get a good one. The expression is awkward, sad, or simply…vacant. Every year. Every time.

Or the disappointment you feel when your child cannot tolerate the sensory assault of participating in scouting, youth sports, children’s gyms, or art classes. And you have to carry him out the door screaming, suffering, and worse — brokenhearted.

The disappointment you feel in your fellow man when they stare, become annoyed, or make comments about your child’s autistic behaviors. Behaviors your child cannot control. Behaviors that still don’t prevent your family from needing to run errands, go out in public, and have fun on occasion.

And so you grow thicker skin, and you try to help your child to do so as well. You tell yourself that the no’s don’t matter. You try to smile when well-intentioned people tell you that you “must be a special person” to be given this child. But you don’t feel very special. You feel helpless. You see your child trying so hard to navigate a world that he cannot fully access. You see the future — and all the no’s that will certainly be coming. All the normal expectations of college, marriage, children — that aren’t necessarily in the cards for your beloved child. You try so hard to make every moment as beautiful and wonderful as you can.

Because — in the dark hours of worry — you sense the need to fill your child’s memories with as much joy and love as you are able. Because you know there will come a day when you are gone. And there might not be anyone left who will care if your child receives more than just shelter and food. There will come a time when there are no more special days just because.

Knowing this is coming, you seek out people, organizations, and opportunities so that your child can have as many iconic childhood experiences and joys as he is able. You learn to embrace the yes’s and those rare days in which your child gets his heart’s desire. You learn to savor present joy when you can — while simultaneously mourning the joys that may never be. Your entire family becomes skilled in adapting. Because the world adapts little — even for little boys and girls besieged and overwhelmed by it.

Recently, special needs families have been disappointed again.  Continued at What to Expect…

On the Failures of Triage: When Mom’s in Short Supply

I found this in Bronwyn's room one day after school.

I found this in Bronwyn’s room one day after school.

Triage tri·age (tr -äzh , tr äzh ) n. 1. A process for sorting injured people into groups based on their need for or likely benefit from immediate medical treatment. Triage is used in hospital emergency rooms, on battlefields, and at disaster sites when limited medical resources must be allocated. 2. A system used to allocate a scarce commodity, such as food, only to those capable of deriving the greatest benefit from it. 3. A process in which things are ranked in terms of importance or priority. -thefreedictionary.com

When it comes to loving, nurturing, and meeting the needs of one’s children, the term “triage” doesn’t come to mind. No mother holds a sleeping baby in the wee hours of the night and ever imagines a reality in which that child’s needs rank below another’s. I certainly didn’t.

I know differently now.

On the battlefield, triage is a necessity. It’s a cruel necessity, but it saves the greatest number of lives. When there aren’t enough medical personnel and beds, you simply have to determine who needs care the soonest. But, like all the hard decisions in life, the truth is that triage – being subjective – sometimes fails. Sometimes, the fellow you thought could hold off for a couple of hours has a heart attack in the waiting room while you are tending to a trauma victim.

When you have a special needs child and typical children, triage becomes your new reality. No, it isn’t triage in the life-saving sense, but it is in every other way that matters. If you must choose between gymnastics lessons for one and speech therapy for the other, you pick speech. And, if your typical child is having problems organizing her room, that problem gets trumped by the autistic child’s penchant for throwing household objects. No, it isn’t fair. It just is. In the ER, the limited resources are beds, imaging, and experts. In the special needs family, they are mom, dad, time, money, and energy. You’d like to think that – as a mother – you are limitless. But that’s a lie we tell ourselves. The only thing a mother has without limitation is love. Unfortunately, children do need more than love.

My little girl is six years-old. Bright, enthusiastic, silly, and sweet. And, because she loves playing with other children and left kindergarten reading at a third grade level, I thought she was okay. Yes, I knew that her father has ADHD. I knew that it is statistically more likely in siblings of autistic children. I knew that she is described by so many as “high energy”. But – compared to our autistic child’s global developmental delays, meltdowns, and busy therapy schedule – her issues didn’t seem like problems.

But they were.

This past summer, it started to become obvious something wasn’t right with her. Removed from her structured school schedule and cooped up in the house most of the time, she became a child who was very difficult to live with. She began to throw tantrums that were off the scale. Our household became a very stressful place to be. It was as if she had a motor attached to her that never needed recharging. When she spoke, she shouted. When she sang, she screamed. Her play was frenzied. She demanded constant attention – to the point of deliberately annoying us to get it. And she couldn’t attend to even the smallest task by herself. What began to really worry me, however, was that she seemed oblivious to the reactions of her same-age friends. She was annoying them with her outbursts, and she didn’t even realize it.

At first, I thought she was just feeling neglected and acting out. I made a concerted effort during the summer to take her on mommy-daughter days out, trips to the library without her brother, extra time spending the night at her grandmother’s, and anything I thought would make her feel extra-special. I even had her tested for gifted, knowing that some gifted characteristics can seem like hyperactivity. But the days out became unpleasant memories of pulling her off of store displays, repeated pleas to lower her voice or stop kicking someone’s chair, and more tantrums. Her grandmother began to voice concerns about Bronwyn wearing her out. She couldn’t sit still for the gifted screening. And the library? [Insert hysterical laughter here.]

I waited until school started to see if it would help. It didn’t. And then the notes started coming home. Red cards pulled. Trips to the principal’s office. Sitting out at recess to finish assignments. She was coming home sad, angry, and confused. And, as soon as she walked in the door, she bounced off the walls – almost literally. One day, she came home upset. She said that two of her friends now didn’t like her. Apparently, her jumping around knocked over one little boy and made him angry. Her constant kicking of her friend’s desk lead to “I’m not your friend anymore.” She didn’t want to go to school in the mornings.

The rule of thumb with regard to medication and ADHD is usually, “When it begins to affect a child academically and/or socially, it’s time to intervene.” Academically, she was fine. But I realized that she was hurting socially. It was time to have the ADHD talk with her doctor.

That talk went really well. I was worried that Bronwyn would behave like a complete angel during the visit. (You know –in the same way one’s car stops making that sound when you take it to the mechanic.) Yet, bless her little heart, she sang loudly, ran around the room, and even displayed her tendency to talk so fast she has to stop to take a deep breath before continuing. The doctor saw it, and she gave us the required questionnaires for her teachers and us to fill out. (I was so happy that she showed all her ADHD tendencies in one visit that I took her to Baskin-Robbins afterward. Yes, I did.) It was interesting to compare the teachers’ perspectives to ours. I was pretty relieved to see that – when you held the forms up to one another – the ratings were almost identical in every area. I confess that part of me is still suspicious about ADHD diagnoses. As a teacher, I’ve often felt that too many kids are diagnosed and on meds. Yes, it was a relief that others saw what we were seeing.

She began ADHD meds three weeks ago. I didn’t expect to see results very quickly. But she came home that day – and every day that week – with a green (good) card. She finished all her work. She told me it was easier for her “to be good”. (Which I’ll admit broke my heart a little. In truth, there is no such thing as a bad 6 year-old.) And, when we took her to speech and occupational therapy, the therapists came out and reported that she “was a different child.” Later that day, she came home and sat at the dining room table working on a marker masterpiece – for three hours without moving. It’s kind of surreal. When she is on that medicine, she has good days. She comes home happy and proud of herself.

Things still aren’t perfect. Right now, she takes just one dose per day that seems to wear off. When it wears off, it’s just as bad – if not a little worse. She spent a few nights waking way too early, but that seems to have eased a bit. She has afternoons when she is quite emotional and unreasonable. And she has become more finicky about food. We have already adjusted the medication once. I’m hoping we can tweak things a bit to help with those issues. But, overall, I’m amazed. I’ve had a couple of folks tell me that you can tell it’s a genuine case of ADHD sometimes by how instantaneous the response is to the meds. I hope that’s true. I hope we are doing the right thing. It feels right. But self-doubt still wakes me in the middle of the night and haunts me during the witching hours of anxiety.

It isn’t the only thing that haunts me. I’m haunted by the knowledge that my baby girl sat too long in the waiting room. That – while we have been obsessed trying to meet the needs of our son – we delayed meeting her needs as well. I wonder why it all wasn’t completely obvious to me. I know how to love them equally – and endlessly. But I’m not at all sure there is enough of me to go around.

Last night, while snuggling, she asked me how much I love her. Before I got to the part about “all the way to the moon and back”, she said, “I know you love me a lot. But you love Callum just a little bit more don’t you? Because he’s special, right?” A little part of me died inside. I quickly corrected her. Tried to find the right words. Prayed she’d never forget them. It was a great many more words I can’t and would not quote verbatim. But their essence was, “Before you were born, I dreamed of you. Just you.”

I hope she believes me. I hope that one day they know I did the best I could. I hope they will forget all the ways I could have done it better and will remember all the ways I loved them instead.

And I hope they know that while triage is a necessity of the world – it has never been recognized in the heart of a mother.

“A mother’s love for her child is like nothing else in the world. It knows no law, no pity. It dares all things and crushes down remorselessly all that stands in its path.”

- Agatha Christie