A Single Moment

Sometimes, there is a single moment where you just want to freeze time.

That happened yesterday.

After a busy day of errands, yard work, house cleaning and playing, we  were all showered/bathed and in our pajama’s.

The kids were playing in the playroom, my husband was watching the Patriots and I was reading a book and having a glass of wine.

All of a sudden, my book was taken out of my hands and a sweet four year old boy crawled into my lap.

My husband and I just looked at each other stunned.

He took a picture.

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You see, my son didn’t let me hug him or kiss him until he was over three and a half.

He has progressed to seeking out a hug from me or sitting next to me with our arms touching (his version of cuddling).

This?

This was brand new behavior.

Like the day he held my hand rather than me holding his hand, I wanted to stop time and remain in this moment.

He stayed on my lap for about ten minutes then settled into the other end of the couch to play his puzzle game.

THEN, it got even better.

Miss ME sat between us and then she laid down, put her legs on my lap and her head on E’s feet…and he let her!

Could a Sunday end any better?

 

Small Zoo, Big Steps

We went to the zoo!

We have a  very small zoo near us, perfect for a first outing to the zoo.

E did not want to go in, but after 10 minutes of talking and soothing, he entered the zoo.

We stayed one hour, saw some animals (otters, goats and ducks were our favorites) and left to have a lunch in an air conditioned restaurant.

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Proud that both kids approached the goats.  E even “fed” one  by guiding my hand (which held the food) to the goats mouth.

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Proud that they moved through the zoo, I thought we’d be at the otters forever as it was the first things we saw.

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Proud to say Miss ME said her first independent sentence, “I see ducks!”.

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Of course, my husband did a little chasing too:

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A lovely hour spent!

 

A Bookstore Afternoon

Today I spent a lovely, lazy afternoon at my local bookstore-An Unlikely Story.

They were hosting an author event, hearing Elizabeth George (author of the Inspector Lynley series) discuss her process of writing English crime novels.

I met a friend and we sat and listened and laughed as Ms. George discussed why she sets her books in England, how she does research and how she comes up with her characters.

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It was a thoroughly pleasant few hours!

I had seen the Inspector Lynley series on PBS and had read a few of the novels.  However, I never read the first in the series.  So, I purchased the book.

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I also purchased another Nora Ephron book (well, just because I just love them!).

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Also, on Friday, I listened to On Point with Tom Ashbrook and I found the discussion interesting.  He was speaking to John Donvan and Caren Zucker, authors of In a Different Key, The Story of Autism. I had heard of the book before and had been wanting to purchase it.  There it was in the “Heard on NPR” section at the bookstore.  Into my pile it went.

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However, my poor baby girl Miss ME seemed to catch E’s sickness from earlier in the week.  So after a few bouts of vomiting, she is now napping next to me while I read.

The rest of the day will be spent watching my girl sleep.

 

 

Stolen Moments

My daughter’s therapy schedule is jam packed.

She has ABA Therapy and Speech therapy Monday through Thursday.

Lately, I have been working every Friday, so my free moments during the day with Miss ME are few and far between.

Today we had an hour between appointments.

Outside we went into the most beautiful summer day.  Breezy, cool temperature,  blue skies with fluffy white clouds.

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We took full advantage.

Slides, rolling down the front yard hill, looking at flowers and watching the leaves rustle in the wind.

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A lovely stolen hour.

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Hope you are having a lovely day.

Day to Day

With two small kids, every day is busy and full of wonder and learning.

We’ve discovered a new musical instrument-the piano!

Sincere apologies to my aunt and uncle for all the noise.

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We saw our niece graduate high school!

Apologies to other audience members, we tried to keep them corralled.  We really did.

Eamon and Daddy at Graduation

Eamon at Graduation

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Miss ME had her hearing check up.

Oh boy, so sorry to the staff and other patients for the unbelievable screaming, we only managed to get a quick look in the ears during all of that…no actual testing or measurements accomplished.   She did acquire a jaunty cap though…anything to at least get the ears looked at.  Next check up, one year-phew.

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Finally, some fun with legos and books.  No apologies here, she was very well behaved during this!

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More appointments coming up this week, but all is good!

Thank you to Kelly at Kellyn Loves Hair for teaching me how to synch my camera to my phone!

It is the little things…

It is the little things you need to think about.

For example-locks.

Today we had all new doorknob locks installed on our downstairs kitchen closets and our basement door.

Left: New outer knob, Right: New inner knob

We have two issues:

  1. Finding our son, aka “The Wanderer”, in the basement.  Not only the fear of him getting out of the basement and garage, but he managed to turn off our boiler during the winter.  No heat equals an emergency call to the heating company, which equals the embarrassment of hearing “do you have a little kid?”.  On the plus side, while the heating person was here, he did notice a problem, fixed it and has saved us a ton of money this winter…that was after he flicked the switch on the boiler that we had not noticed E had turned off….sigh.
  2. We have no safe place to put our food, medications and cleaning chemicals (he’s figured out cabinet locks).  Many times I find E with 3 open yogurts, open cookies or a loaf of bread half gone.  Anyone coming in our house would think we are nuts.  There is food kept in the microwave (because he can’t get at that) and on the top shelf of all the cabinets.  That worked for a bit, but now he has built up his upper body strength (in secret it seems) and is able to get up on the counters and into all the shelves in the cabinets.  I found him running around with the ibuprofen syringe (that had been in a closed bin on the top shelf).  The “out of reach items” have over taken most space and now we have no where to keep the simple things like glasses and bowls.

A call to a local locksmith was made.  Same day service and great advice on what to do (key locks instead of big deadbolts at the top off the doors).  Thank you Expert Locksmith of Foxboro!

As a bonus, a handy dandy tool to pop open the bathroom push locks if anyone locks themselves in.

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Peace of mind is a wonderful thing!

Now, to find a solution of locking the refrigerator.

Our current solution:

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World Autism Day

April 2nd is World Autism Day.

I am mom to two children who light up my life, make me laugh, try my patience and make me feel like the luckiest person in the world.  Oh, and they both are autistic.

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We had two very different experiences.

I started to question if my son was autistic when he was between 6 and 9 months old.  I could only give vague examples of what was concerning me and my concerns were brushed aside by many.  I heard: “boys develop slower”, “sounds normal to me”, etc.  Our pediatrician took me seriously, but things were so vague.  Finally, I said: “not only as a mom with a gut feeling, but as a nurse with a gut feeling, something is not right”.  The process began.  We had to wait many, many months for an appointment at MGH Laurie Center for Autism.  When the date finally arrived, to say we were disappointed in the process is an understatement.   A questionnaire and a doctor playing with our son for 15 minutes…that was it.  Three weeks later, we were in the office receiving the official diagnosis.  I asked what our next steps were (besides ABA therapy) and was told: “Nothing. We’ll see you in a year for a follow-up”.  We were pushed into this world blind, flying by the seat of our pants.

Our second diagnosis blindsided us.  We did not see it coming.  The early intervention team suggested the possibility that our daughter was autistic (she was being evaluated for speech delay/therapy).  I called our pediatrician and explained that we were not going back to MGH as we were very dissappointed (trust your instinct moms out there and stand firm in your decision).  Awesome decision on our part!  We were lucky enough to be sent to Integrated Center for Child Development and placed with Dr. Castro.  Our first appointment was hours long with Dr. Castro and a neurologist.  We left that appointment with not only a diagnosis, but appointments already made by the doctor for a neurological work up, a full medical work up, genetic testing appointments, a list of recommended ABA companies, and a list of additional services in order of importance.  He reassured us that he would be with us for this long journey (“well into adulthood guys”).

My favorite part was watching him hold Miss ME, making her laugh and then turning to us and saying:”she is still the same adorable, sweet girl you walked in with…she’s just going to get some extra help”.

Needless to say, E’s care is being transferred to Dr. Castro as soon as we are over the initial business of Miss ME’s appointments.  Then we will do all the things that should have been done at MGH-full workups in many areas.

Because the spectrum is so wide, it can be a very scary diagnosis.  You need all the help you can get.

We are thankful for all the therapists (OT, PT, Speech, Developmental, ABA), E’s wonderful Pre-school teacher and aids, our family members (who understand and have patience with both the kids and us!), and our friends who support us in any ways big and small.  A random hug, the offers to watch the kids for a few hours, a friend gave us a no longer used iPad and another friend was generous and gave us a TouchTalk that was no longer being used in her family.  Suddenly E had another avenue to communicate.

A few things:

  • Trust your instincts.  You know your child best and if you are concerned or questioning if something is going on with your child-push, push, push. 
  • Know that you don’t need to go to the “big name hospital” there are other options.
  • Know that the spectrum is vast.  In my own household you will see two ends of the spectrum (non verbal/verbal, stimming/non stimming, eye contact we had to work hard to make happen/no issues with eye contact, etc.).
  • Know that professionals aren’t trying to hurt you or judge your child if they bring up the possibility of autism.  After the EI team left Miss ME’s speech evaluation and had brought up the possibility, I cried for three days and said some pretty mean things in my head about “those people”…I had already been though this process, yet I was angry that they had said it.  No matter what your situation, it still hurts your heart to hear anything might be amiss with your child.
  • Take time to take care of you.  I am still working on this.  An autism diagnosis means your life is going to become very hectic and your house filled daily with therapists (which is wonderful, but you can really feel a loss of privacy).  Taking time to go to a gym class or go to a coffee shop and read for an hour can help.  Heck, I once sat in a parking lot at the beach for an hour and had a really good, cathartic cry.  I felt a lot better after.
  • Take time to spend one on one time with your spouse/partner.  Your relationship can quickly become talking only about the kids and therapy and ABA reports.  Try to take at least once a month to go out just the two of you…we are still working on this.
  • Don’t hesitate to tell someone your child is autistic.  I was once in charge in the recovery room and helped a father keep his 21 year old autistic son safe after surgery and we started talking.  He said:”you were very good with him, thank you” and I told him my son is autistic.  He gave me some wonderful advice. Advice regarding availability of respite care, therapy agencies and something as simple as we can apply for a handicap parking placard.  Sounds simple, and I probably wouldn’t use it that often.  However, if I do have to take both kids out alone, parking lots can be dangerous.  My son doesn’t seem to have a sense of danger and he is a wanderer.  Getting from the car to the store door can be challenging.  Being able to park close to the door could be very helpful.

Know that the road will be long and hard, but filled with joyous moments! Your beautiful baby will continue to light up your life in ways you can’t even begin to imagine.  The day I hear my non verbal son say Mama will be super sweet. (I know it will happen someday!)

 

 

 

Random, nice moments

A few weeks ago, we went to Castle Island in South Boston to celebrate spring coming (which means opening weekend at Sullivan’s).

While my husband was in line to get the food (which stretched on forever), I occupied E and Miss ME.

Along the path that encircles the fort, there are big square boulders that are used as benches and tables.  Now, my son LOVES rocks, pebbles, boulders, basically anything made of stone so he was in his glories.

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While he was doing his thing, I noticed a family coming towards us.  I would guess that the son was about 15 years old.  He was walking a determined path down the center of the stone boulders, being assisted by his dad.  As they approached our boulder, the mom started to explain that he had autism and needed to climb over our boulder.  Actually, part of what she said was:”sorry, he’s kinda like Monk if you’ve seen that show”.

I smiled and said: “No need to explain, I completely understand”.  She watched my son and smiled and said: “Yes, I guess you do”.

They started to walk away, both she and her husband stopped and turned around.

She called out “Mom, it does get better.  It will be wonderful and you are doing a great job!”.

I needed that.  I really needed that in light of recent changes in our family.

So, thank you to those strangers…you brightened this mom’s day.

Good thoughts…

My children were asleep when I came home from work last night.

I went into their room and just stood looking at them.

The only thought in my head:

“How lucky am I to be their mom?”

I’m a lucky lady.

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