Category Archives: alone

I’m Leaving a Light On for you

When you are the parent of a child who has a disability you can feel isolated. You begin to not go out, to not seek friends and scared of judgement. You don’t complain, because you fear people will think you are not a good mom. You try to promote your life as a Hallmark Channel movie and not a Halloween one. Then the holidays come and you are slapped with the face of reality. How to get through the season when you feel so alone and trapped in this unexpected life. Continue reading

Knowledge is just as important as inclusion

Boo is in an integrated preschool. A school where for every child that has a disability there is one typical child. The disabilities range from autism to ADHD to Down Syndrome to Cerebral Palsy to Boo. At a quick glance at the class you might not be able to tell which child is typical and which child is brilliant.

Which is the whole point of the program.

Okay maybe it isn’t the whole point. However the point could be made that by exposing our children to typical will allow them to grow social skills that come naturally to their peers. The peers learn empathy, patience and that not everyone is the same.

All good, right?

Except the other day when it wasn’t. 

My friend was walking into school with her child. Behind her another mother was walking in with their own. She heard from behind her, “who’s that”? 

The child replied, That is X. He doesn’t talk.

Instead of letting it go or saying something….ANYTHING positive the mother was heard shushing her and saying “that’s not nice”.

Here is the thing. What the girl said wasn’t wrong. It wasn’t mean. It wasn’t “not nice”. It was true. Kind of. X can talk. But he has autism so you have to be looking at him and engage him for him to talk back to you.

X’s mom left feeling like her son was weird. Like he is misunderstood. This one place in the universe (outside his home) was supposed to be the safe place for us. A place where our child is accepted for who they are.


I adore Boo’s program. I love each and every one of her teachers and therapists. But I worry they might be missing an important component. I understand privacy laws and all that crap. However the typical children should be made aware (in words they understand) why X doesn’t talk to them. Why Boo doesn’t play appropriately with them. Why oh why in words a young child understand all children are not the same.

That all children, typical and brilliant are all special in their own way.

I am sure they do teach it. But the other day the lesson was lost and a mom went home feeling her son was weird. I think there needs to be more done. More parent teaching. Yes, I know we cannot get parents to come to a PTA meeting who can we get them to an inclusion training? 

There is an answer somewhere. It starts with the letting the children teach the parents. It doesn’t stop at an integrated preschool but an integrated school environment. One where every day there is a brief moment of education of those with challenges.  Awareness helps but until you ask you do not know, so you guess. It’s perfectly normal. Being aware is knowing autism exists. Being knowledgeable is knowing what autism is. We need to let inclusion bring more than awareness but knowledge.

If we can not let a 5 year-old ask the question, how can the 18 year-old know? 

My Challenge — Lizzi

Today I would like to introduce Lizzi the author of Considerings where she actively tries to find the good in life. A blog that is sometimes fiction so good you think it is true, some days full of humor and some days despair. It’s a wonderful mix of writing and feelings. No matter what Lizzi faces each week she is determined to end on a high note with her Ten Things of Thankful post. A wrap up each Saturday where she sees the light in all of her clouds.


My Challenge: Despair



Several hours ago:

My challenge right this second, as I write this in an empty house steeped in melancholy and shattered expectations, is not to go to the cupboard in the kitchen and fetch down that shining bottle from the top shelf.

My challenge is to convince myself that it’s a sufficiently slippery path to prove deterrent – that taking the edge off with alcohol isn’t the answer. At the moment the only thing holding me back is the knowledge that I’ll regret the number of calories it contains. Ah serendipity, thou art disguised within even the soft and pudgy linings of low self-image.
My picture speaks for itself, but it doesn’t say how interconnected so many of those things are. It doesn’t tell of the (thus far) unbreakable bonds between an abusive childhood and my inability to disconnect and stop assuming responsibility (or blame) for aspects of my current situation. Or those between spousal illness and miscarriage. And infertility. And rejection, leading to further low self-esteem. And depression, which is riddling our relationship like woodworm, gnawing away at the things we thought we held dear, and now call into question, time and time again because “what if we hadn’t…”

It’s harder after the high of such a wonderful, fleeting day, where a bloggy friend and I met in person for the first time. We stood in glorious sunshine on the beach and let the warm ocean bathe our feet as we talked and talked. And later we went for cocktails and gelato and things were wonderful. And now she’s gone.

And it’s harder because the day before that (my fourth anniversary) I lay crying, once again rejected (because his illness allows him no other option), utterly desolate and we discussed whether or not our marriage would last. Because we ‘clinked’ our fries together in the restaurant in a desperate show of silliness and recognition of the occasion as tears bathed my cheeks and his eyes turned to pools of despair. Because we had cocktails and got buzzed and all that went away for a while, and with the corners of the situation tamed by tipsiness, we hugged and laughed and the shit went away for a while.
And it’s hard because I have to find a silver lining and even though the sun is up and Maslow would be convinced I should be content, at least, I really, really, really want that drink.

Now:

Writing is cathartic anyway, but particularly from a place of hurt and desperation, because it forces some of the challenges to come into stark clarity, their contrast perhaps shocking, as I lift them out of the tangled mire of mind, determined to examine them in the light of day and describe their form.

In writing this, I was able to trace those unbreakable strings which bind me so tight. And having traced them, I was able to explain them to Husby, who *listened* and cried with me as he realised the extent to which his illness and my smorgasboard of challenges crash headlong into one another, leaving us both trainwrecked and licking our wounds.
I reached out, not for a bottle in the end, but for a friend, who was in the right place at the right time to talk me down and just hear me, and make me feel less alone.
The aloneness is hardest, especially when part of what’s trapping you is your own mind, your own thought patterns and your destructive, determinedly negative perspectives. In point of fact, the (seemingly relentless) shitstorm of life is one of the main reasons I’m part of a new blogging initiative – the SisterWives (http://www.sisterwivesspeak.com) – a group of writer friends whose collective history reads like a manual for surviving almost every kind of crap that life can throw at a person. We are damaged goods, but determined to live life in Silver Linings, and *somehow* turn our hurts to helps. We don’t want others to feel alone. We want to find strength in being vulnerable and honest and sharing our truths in the hopes that they’ll somehow be useful to Someone Out There.

Our motto, (the former part I struggle with, but am trying to take on board): Alone we are enough; Together we are stronger.

Thank you, Lizzi for your honesty with your challenge. All of us find moments of despair. When it gets too much. When you wonder if that shiny bottle will dull the pain. Trust me, it just makes you puke if used for that purpose. There are so many challenges interlinked, as Lizzi has shown. But there is support out there for just about anything you are facing. This virtual world is sometimes all you need to realize you are not alone. I’m glad she still sees the hope in all the clouds.

What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com

A letter to myself

I’m semi-participating in a Summer Blog Hop Challenge meant to show others how the life with a disability, or with a child who has a disability, is a journey. A never ending one, for sure. But a journey filled with triumphs and some tears. Of course per my usual stickto-break-the-rules reputation instead of starting in week 1 it is now week 3. So today we are starting the journey half-way through with a letter to myself. Even though that was week 2’s prompt


Dear Younger Me,

I was going to write to the much younger us. The one who is upset because our first love left us. Or the one who just met David and thought um….not my type but sure let’s go to dinner. To the younger us who on the eve of her wedding and asked David to elope instead. Or to the new mom to Abby who was scared out of her mind at this thing that wouldn’t stop crying and tell you eventually she would no longer seem breakable. 

Instead I am writing this for you to receive after Boo’s birth. She is now four months old and you are thinking Holy Crap not only did I just get puked on from my neck to my toes I am getting a letter from the future. You are also thinking I’m writing to give you good news except you know us by now and realize maybe not.

First I want to tell you that Boo will survive. You can cry and breathe and rejoice. Now the other shoe dropping on your head is me telling you she will survive but it will not be easy. I am not writing to tell you what will happen. Because no matter what I write it either won’t change things or worse give you the magic answer you are looking form. Rather I write this to the mom of four-month old Boo to give you some advice.


Now you know it is really me, right?

Well here it is:

Never listen to a doctor, a nurse, therapist or school teacher that Boo cannot do something. There will be a doctor or two you will want to punch in the nose, but you will refrain from harming them.  

Pay no attention to someone who says that Boo is just like their daughter/son/grandchild and “will grow out of it”.

Never give up hope. In yourself or in Boo.

Do not ever, for one minute, stop searching for an answer. Do not listen to the doctor who says just accept Boo for who she is. It is too important. You and she need the answers and being an unknown neurological syndrome is not an answer.

Keep Early Intervention. As awful as it is you will need them when she is three. But do not listen to them when they say she does not need Spaulding Center for Children. You are right they are wrong and they will deal with being offended. 

As much as you have to fight to make Boo all she can be, you will spend more time loving her than fighting for her. She will impact not just your life but those around her. Boo is making a difference in this world one smile at a time.  You just have to get through the what seems to be unending puke phase. But I promise it does end.

You know all the friends that say “let me know if I can help”? Here’s the thing they WANT to help. You have to TELL them how. Instead of waiting for them to call you, call them. Say I just need someone to come over and sit with me. Call them and say David’s home do you want to go to the canal with me. Call them and say I’m drowning and just need a friend. Cry and laugh with them. You will be amazed at the support just waiting for you. Your future self knows she waited way too long to reach out. Once you do life will become so much easier and less lonely.

Remember that David is there and he is your partner in this unexpected life. Don’t wait so long to include him in Boo’s therapies (yes, there is more than one). You will be amazed at how well he does.

Lastly, give yourself a break. You are allowed to feel tired and overwhelmed. You are entitled to feel like this just isn’t fair. I promise you that this life becomes easier. You will one day brush your teeth before dinner time. You will one day wear a shirt without Boo’s remains on it. You will be amazed at her journey.

I won’t spoil the good parts for you. Be prepared to be amazed.

Love,
Older (but less tired) Me

PS–oh and don’t worry you will not cave and buy Abby a pony.