For the uninitiated, this is what it looks like

I’m going to feel all lapsed-Catholic guilt for admitting this, but I sometimes despise this life. I hate that I don’t understand my own child. I despair that by my own actions I am the trigger to her crisis. I freaking loathe that this behavior doesn’t happen at school but only at home (see trigger comment).  I despise that I cannot calm her, I cannot reason with her, I cannot even give in to her because if I do this will not be a daily occurrence but an hourly one.

For the uninitiated, this is what a meltdown looks like.

How did it start? I made a coffee cake. I made a coffee cake because Bridget loves them. I made a coffee cake for tomorrow’s breakfast. Bridget doesn’t understand tomorrow. She doesn’t understand waiting. She does not understand the difference between breakfast and dinner.

I made a coffee cake.

I just read this book, “M in the Middle” by middle school girls of the Limpsfield Grange School in the UK. It is a book written by girls with autism, but in a narrative of a fictional character. When I made the coffee cake, I disrupted Bridget’s afternoon. I did not know that making the coffee cake during the afternoon would confuse her. I would inadvertently change the timetable of her day.   Reading this book, I realized how often I misunderstand Bridget’s meltdowns. I fall into the trap of M’s mother and I lead Bridget into…

“Time does not hold me warmly in his arms….the little timetable squares help me traverse the noises and smells and people.”  “Without them I am truly lost” (from M in the Middle location 463)

I disrupted not only the time of Bridget’s day, I disrupted her “smells”. She smelt the coffee cake, but could not correlate the time of day (almost dinner) with the smell. Why can she not have it? She even used her words.  She said please. She said I want. She said, she said, she said….and I gave her the answer. The correct answer but not the answer to make it right.

I made a coffee cake because Bridget loves cake. Like really loves cake.

In the book there is a scene where the mom just doesn’t get it. She doesn’t understand that it’s not about M (or Bridget) trying. They are trying, it’s just their trying does not fit into our definition of effort. I am this mom, especially tonight when I hate this life.

“Can you not, just for once stop this?”

I have uttered that phrase more times then I have had a handful of M&Ms.

M in the Middle thinks to herself (because she cannot possibly verbalize), “And I want to scream at her….I am trying to fight it but I’ve slipped into the control of the Beast (anxiety) and I am so full of frustration and fear”. (Location 476 of M in the Middle)

Holy freaking crap. How often have I done this with her typical sister? Why are you acting this way and never waiting for the answer. Bridget cannot verbalize the answer. She cannot tell me why not having coffee cake in this moment is so important. She cannot understand that I cannot give into the moment because I refuse to set a precedent that if she throws a tantrum she will get her way.

Where is the common ground? Where do I find the bridge to holding Bridget accountable for her actions while not sending her into a volcano of anxiety and fear?

I do not know the answer. I wish I did. I wish I could hold Bridget to the same standard I hold her sister. I sadly dream of the day when I no longer have to avoid situations because Bridget cannot handle them. She cannot trick or treat, I will never have the same milestone as her sister stressing over a costume. I will not be able to take her to a playground without her sister to show her the way to play on the structure. I will continue to make mistakes and to damage her spirits and to try to do something right for her only for it to go horribly wrong.

Bridget, most probably, will live with me for the rest of my life. I will unintentionally damage her. She will unintentionally hurt my heart. We will make one another cry.

I hope, I believe, we will heal one another more. I am luckier than most, I have a child who will allow me to hold her down for testing and then curl into my arms for comfort.

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I have a child who laughs more than she cries. Who is the worlds best hugger. A child who lights my world up with her smile more than she devastates it with her frustration.

Sometimes I hate this life, like seriously hate. I blame the God who is supposed to be loving and kind for letting my beautiful child suffer. I despise Him for making mothers have to hold their child down for painful testing.

Yet I am so very thankful. Thankful that I have a child who wants nothing more than to be in my arms, to light up my life with her smile.

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I’m not sure what she was thinking but I am thinking World Domination

There are some days that I despise this life with Bridget. I am very grateful that those days are far outnumbered by those that bring me joy.

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Lately Bridget’s meltdowns are a daily occurrence in our home. It, quite frankly, sucks. Reading M in the Middle allowed me to get a glimpse of what she is experiencing. The silver lining is that the smiles outnumber the meltdowns. I don’t know how I would survive otherwise.

***I read the book “M in the Middle” by The Students of Limpsfield Grange School in two days. That is how powerful this book was for me.  If you have a child with an intellectual/developmental disability or with autism or with a syndrome of unknown origin you need to read this book. If you are an educator or therapist or anyone who works with someone who is non-verbal, semi-verbal or who suffers with anxiety you need to read this book. This book needs to be on the best seller’s list, on Oprah’s list, and required reading for anyone who has a friend, a child, a patient, a co-worker or knows someone who has anxiety and/or autism and/or any communication issues. 

I was not asked or paid to read and review “M in the Middle” I just know it is the most powerful book you will read this year. 

 

 

 

3 thoughts on “For the uninitiated, this is what it looks like

  1. Michelle

    I wish I had some answers too 😦 just know you are doing everything you can with what you know 1st this moment. I know it’s hard, on both of you, and I’m sorry. Thanks for the book recommendation, I’m going to see if our library has is. Hang in there!

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  2. Pingback: When this week is better than last | (Un)Diagnosed and still okay

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