Monthly Archives: May 2012

Real Love

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Mother’s Day is tomorrow, and my sweet husband has planned to take us for a ride down the shore (we’re in Jersey… we like to go down the shore… but I wouldn’t say we are very ‘Jersey Shore’ if at all).  I can’t even express exactly how good it made me feel for him to rush around tonight packing things for our little morning joy ride and beach walk, but it made me feel very warm and loved.  What a good feeling that is.

And I wanted to take a second to reflect a little bit about love and motherhood with a child on the spectrum.  I find that it is a common misconception about people on the spectrum that they ‘do not feel love or show affection.’  This can be the case, but I find, especially as our family networks and meets other families with members on the spectrum, that this is not a very accurate idea.  I think a better way to look at it is that people on the spectrum might not show affection or communicate it the same way as others.  Some on the spectrum can’t show it physically because it hurts to do it.  Literally.  But I don’t think there is a lack of love.

Our son, for instance, is a very sweet and loving little guy.  Emotions are very hard for him to grasp, though.  Still, there is no question that he experiences emotions.  The issue for him comes in translating what he is feeling into some sort of cohesive message– obviously this is a likely factor in his aggressive behaviors– and that makes him frustrated.  Love is definitely an easier one for him.  Granted, when I say love is easy, I only have received one spontaneous “I love you” from him at this point, and his other “I love you”s have been in response to me saying “I love you, Gabe.”  Quite often, he repeats the phrase and says, “I love you, Gabe.”

BUT– and this is a big but– he gives kisses and hugs and cuddles spontaneously.  He tells me he wants to “go in Mommy’s nest and cuddle” (which means he wants me to lay or sit on the couch with my legs up so that he can squirm behind my legs and sit behind them like a bird in a nest).  And while he sits in my nest, he gently will rub my arm and lay his head down on me.

That is love.  The action of love between a mother and son.  Of course my heart would dance with joy if he were to start spontaneously saying “I love you” or expressing his emotions more clearly in general, but I know my son loves me.  He shows me every day in some way.  And sure, there are times when it is hard to tell, and the communication lines are so very mixed up and confusing for him and for me, but that loves is there.

Our love, mother and child, is what leads us through the dark… hand in hand.  This journey of parenting– heck, I’ll even say special needs parenting– is the hardest and most rewarding of my lifetime, and what a gift it is to be the mother of my children.  How grateful I am for them.  Because of them, how I grow.  And as I learn the balance of being a tiger and a lamb for my children, I hope I do them justice.  I hope I show them what it is to be … loved and loving.

Happy Mother’s Day to all mommies everywhere.  Cheers to you!

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Tips for the Bathtime Blues

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Got bathtime challenges?  Boy, do we know the rinsing roulette in our house!  Here is what we have learned in dealing with sensory issues in the tub with a toddler.

Giving  some predictability may help.  Bathtime was a huge struggle for us (and can still be) because of temperature sensitivity and rinsing of hair.   G has hypersensitive hearing and hates sensory experiences he is not expecting so rinsing at bathtime is rough on him.

If your child can count or understands numbers, use them to give some predictability to the # of times being rinsed.  “Okay, time for rinsing hair!  10 rinses with the big blue cup.  1…. 2…. good being brave….. 3….” I know it can sound cheesy, but it helps! We also have a cup that is rubbery and sort of sits/ molds to my son’s forehead so we can rinse without it going over his face and ears— mostly… he still moves a lot.  And if numbers aren’t any good, any sort of listing or talk about something reinforcing during rinsing can be grounding.

Also, you can do sort of ABA with this… perhaps a special activity after bathtime to look forward to?  a book? a preferred bedtime snack?– a small picture reminder of this reward at bathtime might help– you could refer to it as you go– “first rinsing, then x!”

If the temperature is an issue, try doing some water activities outside of the bath and teach temperature language.  Distinguish that warm is not hot, that cold is not cool, that ice is very cold, etc.  Let your child explore and play in water in a “safe” environment to get her more apt to accept bathtime.

These are all strategies we learned through our Early Intervention Occupational Therapist.  I hope they can help you, too!

What my name is worth.

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I am finding more and more that people (especially some who do not have children or some who do not have children with special needs) miss the intrinsic nature of special needs and medical-related conditions such as autism and how they regulate a family’s every day life.  It’s not a construct or a purposeful attention getter.  For families who handle the challenges of autism, autism as a word holds no stigma.  It is just a what-is sort of word.  It’s not a dirty word; it’s life.  It affects how you walk to the car, how you get dressed, how you plan for a family outing, how you plan for a holiday, how you do just about everything.  There’s not much fly by night unless you’re looking for a meltdown.

And within that everyday life, autism can affect so many larger pieces… the structure of a day, the schedule of a week, employment choices, lifestyle choices, location choices… everything.  I remember being younger and more ignorant when using that word “autism” would hold weight that could easily be flicked away as if to say– “so what?  autism?  that is not an entire life… why mention it?”

Of course it is not an entire life, but it is our life right now.  We have embraced that this word is the best word to describe what we do, what we think about, how we feel, where we go… and as much as it is on the minds of all in our home, I am the spearhead of all that deals with therapy and doctor appointments and research and daily activities.

I’m a singer, sure… I sing.  I sing for fun.  I’m a writer, sure… I get paid to do that, and I work to protect the environment.  What am I really?  I’m a MOM.  My children are my heart.  And what am I doing with them on a daily basis?  Here is our newly-revised schedule:

Monday

ABA 2 hrs

Tuesday

Transition to Preschool 2.5 hrs

(1X month– Baby Girl speech 1 hr)

ABA 2 hrs

Speech 1 hr

Wednesday

Baby Girl Developmental Intervention 1 hr

ABA 2 hrs

OT 1 hr

Thursday

Transition to Preschool 2 hrs

ABA 2 hrs

OT 1 hr

Friday

(1x month Physical Therapy)

ABA 2 hrs

And while I am driving to transition to preschool, I am singing or listening to music of my choice because my kids tend to like my voice (for now) and anything I choose to listen to.  And at night when they go to bed, I read and write and work like a crazy lady.  Whenever I get a chance during the day, I brush up on work, and I try to keep up on my house.  But what is my life really lately?  It’s me advocating for things related to this word autism.  It’s our lives right now.  It is the reason I do what I do how I do it.  It might not be US, but it is a part of us… a part that has still recently (I mean it has not even been six months since the diagnosis) become clear to us.  There are so many questions left unanswered and screenings left to be done.

So won’t you just say it?  That being an autism advocate is MY life, and that it is okay. It isn’t an over-dramaticized or a stigmatized or an ugly thing… autism isn’t a dirty word.  It’s a word worth mentioning.  If you mention me, spread awareness, because that is what my name is worth right now.

Where We Are Now.

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My son is 19 months older than my daughter.  Today I can truly say she has surpassed him in her ability to communicate her emotions and needs in her simple use of nonverbal communication (pointing, showing).  I am overjoyed that my daughter is meeting such crucial milestones in social-emotional growth.  I am grieving that my son is now falling behind his baby sister, albeit they are “close” in age, in a part of his development.  When I take this into consideration with his truly emerging sight reading skills, his math skills, his command of colors, shapes, amazing memory, impressive comprehension skills of concepts like butterfly life cycles, incredible language abilities (his USE is the problem) for his age… I have a child who is almost six years old in some ways and eight months old in other ways.  He’s pretty much daytime potty trained, but he freaks out when he has to put his pants back up- and he surely hasn’t the skill set yet to pull them up himself.  I guess it’s no wonder that he is having violent outbursts and meltdowns.  How frustrated he must be to be so beyond and so behind.  

And I just love him.  I love him so.  And I love my daughter, too… I feel for her right now.  She is walking all over the place now, and my son is not happy about her being all over the place… it is not easy to be the little sister right now, and I feel for her.  I feel for her big time.