I know we have all heard the term Mindfulness.

And we are all made aware of the good of “being in the moment.”

To be “in the moment” requires that you are thinking, feeling and immersing yourself in whatever task you are doing or whatever place you are.

It means using all your senses to really focus on the moment you are in.

So easily said, but not so easily done.

This mindfulness is not something that is new to me, just something that is a bit hard to achieve all the time because life gets so busy.

And especially so when you have a child with special needs.

It seems that life is a go.

-From the moment you know something is wrong

-To the moment you get a diagnosis

-To the journey of therapies

-To the everyday life and its work

You are on a different path than most, one that requires a steady pace. One that requires stamina and focus. One that does not allow, usually, for opportunity to be Mindful because there are too many things that require us to be pragmatic, planned and scheduled.

I was thinking, again, about this concept of mindfulness this past week, partially because we just entered Summer time and mostly because our schedule is much less structured now then during the year. Let’s face it, I had a bit of extra free time, not usually provided.

-With this extra time I have been able to be more mindful:

-I noticed that as I was not clutching the steering wheel of my car, with one eye on the clock, I could see that the sky was a really pretty blue today.

-I noticed that when I stepped outside to play with Michael, that the air smelled so much like Summer, a mixture of grass, sunscreen and—well sunshine.

-I became aware of just how happy Elizabeth looked this morning as we planned out our day. “I am so happy to be off, Mom!” Was how it was stated.

I became aware of so many things, now that my usual school treadmill has been turned off.

And between you and me, I simply love it.

A lot!

This mindfulness lets in the really precious stuff that can at times be overlooked.

I think as we work so hard for our children, we should give ourselves the gift of enjoying these moments as fully as we are able.

So how do you do this whole “Mindful” thing? For me it starts with taking a deep breath and opening my eyes and telling myself to really see what is in front of me.

To really feel whatever I am holding.

To really smell the air and exhale out any stressful thoughts.

To let my heart hold onto the memory of what I am seeing.

I know we can see many things that make our hearts sad, like when our children struggle to talk/communicate or do a task. So allowing the good things to take hold allows us to remember the good stuff—the successes. Maybe carving out more mindful moments amidst all the day to day stuff would be a good goal for us all….me included!

I guess this blog is my way of saying that each person deserves the right and joy that comes with more mindfulness.

It is my way of encouraging others as they walk their own journey.

I wish everyone a peaceful, mindful month.

-Michele Gianetti 

Michele writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder and Dyspraxia. Follow her story since the beginning here.

The terrible two’s.

The tween years.

The teenage years.

Young adulthood.

These times are all markers of our live and the lives of our children. And we as parents are well versed in what to expect or at least what we are TOLD to expect during each these times in their lives.

We know that moods will fluctuate, attitudes will show themselves, peer pressure will mount and independence will be desired.

We are also told what to do, as parents, to guide them, educated them, keep them safe and oddly let them go.

But what does not get talked about or what is not as easily defined are the time frames of life that define those of a child with special needs.

For not always do the actual age of the child match the developmental age.

For not always do the expected moods or attitudes happen.

It is like every child who has special needs has their own game plan.

I speak from 19 plus years in on journey with Elizabeth.

There have been so many times in life that Elizabeth’s actions were not what was to be expected of a child her age or perhaps her emotions were delivered too strongly for what the situation was.

So as a result, the typical markers of life were never as clear to us as to others.

As Elizabeth has grown, it has always been hard to see a mood or hear a comment with a bit edge to it and wonder if it is because of her disorders or is it because she is 12 or 16 or 18 years old. Separating the disorder from the typical is hard.

Sometimes as I was thinking she was upset because of her SPD, my oldest child, Emily, would say something like “Remember Mom, I used to get like that when I was too tired.” Or “Mom, she is acting like I did when I was mad about something.” It was these reality checks, these windows to the typical that I would use when I was in this unfamiliar territory. Sometimes as moms to special needs children, we are so in the proverbial “trees” that we are unable to see the forest.

For the record:

• Elizabeth does have moods- totally unrelated to her SPD or Dyspraxia.
• Elizabeth does have a tough tone to her voice- again unrelated to her disorders.
• Elizabeth has slammed a door, yelled that I am ruining her life and complained the “Nobody cares how upset I am!”

Elizabeth does NOT:

• keep a clean room
• do chores happily
• pull herself away from television or her room easily.

Sounds pretty typical. Right?

It is.

But it is mixed in with the times that the moods ARE related to sensory overload. Or that the tone IS because she is frustrated by her Dyspraxia.

I have found that thinking of all the moods, tones, attitudes of Elizabeth, good and bad ones, kind of like sand on the beach that you sift through to get only the shells. It is like I have to mentally sift through the mood or emotions to finally get at the cause of the mood or attitude.

I try not to jump to the reason why.

I sift.

I think.

We talk.

And then I see the “shell.”

Then we talk more and depending on the “shell,” she is encouraged, hugged and we talk about what to do next or she has a punishment, revoked privileges or a required apology.

I will say that as I play back some really tough teenage moments with Elizabeth, I remember how I used to momentarily smile or laugh at the sound of her feet stomping up the stairs or hearing her tell us all that we needed to just “leave her alone.” It was like I relished the typical for that quick moment before I had to decide how to handle the typical.

I do know that making communication a priority when she was younger was a huge help as she has gotten older, but it is also doing the work to really understand your child, how they work and how their disorders affect them each day.

Our story is shared to make you smile, give a glimpse into our world and maybe help others on their own journeys.

I wish you all a peaceful month.

-Michele Gianetti

Michele writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder and Dyspraxia. Follow her story since the beginning here.

Somewhere in my book I know I reference “Team Elizabeth” and at the time, it consisted of her OT, her exercise trainer, her tutor and her speech and language pathologist.  Her “team” has changed as Elizabeth has grown.  And the “team” reflects her needs at the time.

For example, when she was younger a vital member of her “team” would be her Ear, Nose and Throat (ENT) specialist.  And at another time, we would have added the name of the doctor who managed her brief, but productive and very costly foray into the area of biomedical treatment.

We now have an entirely different “team.”

It fits her needs perfectly.

They all “get” how Elizabeth works and know how to help her grow and achieve.

But how did we get these teams way back then? And how did we help them learn about Elizabeth’s disorders so that they in turn could help her?

Well, it all starts with getting through the first big block to this journey and that is to work your way through denial.   Maybe some were blessed to sidestep this feeling and maybe others were able to get to the other side of it quickly.  But for those like me, it was a pretty tough and pretty big force to face.  It took a lot of work on my/our part to allow the words about Elizabeth in, to face the truth that what we wanted to see and make real, was indeed not there.  It took us listening and not just hearing and allowing ourselves to feel the loss of typical and the acceptance of special.

After denial is behind you, the real work can begin.  Know that you as parents know something or things are not right.  You know in your heart the things you see each day are not what you are supposed to be.

Please begin by writing them down on paper:

• When they happen.

• How long they happen.

• When you first noticed them starting.

• How often they happen.

• What you do or cannot do to help your child.

• How these affect your child’s day.

These things are so important when you try to explain your child to a professional.  For two reasons:

• You will NEVER remember them all when the moment arrives to tell them all.

• It is easy to make a copy of the above and share it with professionals at will.

After all, you are the person with your child during a typical day, doing typical times.  How hard is it truly to have your child act like it is just any other day when they are in an exam gown or are in a waiting room for a long time?

Look up what you can about the signs or delays your child is showing.

I know that this can be unnerving but sometimes just trying to understand about a subject that is foreign to you can also be a bit of a comfort.  I know that reading about Elizabeth’s speech delay helped us make sense of some of the frustration we saw in her.

Print out what you want to share with the professional.

Talk with your child’s pediatrician.

This is where the things you have written down, the anecdotal reports, the internet information will help you help them understand.

Be honest and truthful.

Ask them for advice on where to go next.  Ask them for a referral for further testing if needed.  Ask them for a diagnosis if possible.  But do not allow the moment to pass, when you WISH you would have asked your tough questions.

Pediatricians currently are required to assess for developmental delays but when Elizabeth was young, they were not.  So they are more ready to offer suggestions of where to go and whom to call.

Please remember that you are your child’s best advocate.  And that if something feels wrong in your heart, then in my experience, it probably is not the right fit for your child right now.

Getting together the “team” that works the best for your child is a process.  Getting a diagnosis is important.  Getting the right professionals for your child is important but being able to present your child’s delays and needs to any and all who work with them and getting them to understand your child is by far more than important … it is critical.

Your “team” will be amassed over time and you will be the quarterback, managing them all.  

Please know that as the “team” changes it means your child has changed as do all children, those with special needs or those who are typical.   Change can be hard but change can be a very good thing.

Know your child, know their needs, speak for them and about them. And let them know you love them through it all.

Please know that a diagnosis is a very helpful thing to have for insurance purposes, school testing, IEPs, but sometimes before the diagnosis is made, your heart tells you what is “just not right.” For us, NO real language at age two. We saw a lack of motor skills.  Not walking, not sitting up.  And there were so many other things.

We made a list in our heads.  We knew we needed to find help for her.

-Michele Gianetti 

Michele writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder and Dyspraxia. Follow her story since the beginning here.

Goals.

My wish list.

Two things that I have carried with me since Elizabeth was born. Actually, more like since the minute she was diagnosed.

Goals and my wish list.

I have carried these things around like two best friends. I checked in with them often, planned things around them, and happily checked things off of them when Elizabeth did something new.

They have never left me in all these years, and I feel, if I am being truthful, that they will probably always be with me for Elizabeth. But they have changed shape, that is for sure:

• - I just hope she can say the last part of her words.
• - I want her to get the chance and try to go into this class room.
• - I hope she will talk to some kids on recess.
• - I want to work with her on her writing.
• - I want her to learn to text her friends.
• - She needs to learn to sign her name in cursive.

Yes! It has changed, but the one thing on the list that continues to be there after each flip of the calendar year is her speech goals.

Speech is this inherent part of Elizabeth needs. Her dyspraxia is quite severe and as such we have fought long and hard for any and all gains in the speech realm. 

But with dyspraxia, those goals took extra work because those with dyspraxia form habits very quickly. Be they good habits, like saying a word correctly, or bad habits, like misarticulations. Well, these bad habits are SERIOUSLY hard to break.  It is like once they are formed, they become so strong!  So we learned to learn things correctly the first time. Perhaps we learned this a little late in the game but we learned it nonetheless.

Speech Goal #1

So back to the goals and wish list… right now in Elizabeth’s speech life, we are working on social speech. The kind of thing that requires, among other things:

• - Thinking about what someone said.

• - Answering on topic.

• - Staying on topic.

• - Allowing everyone a turn.

The dyspraxic mind typically has trouble with organization of thoughts and information, so these goals are kind of tough for Elizabeth when she is stressed or too much is going on in her life. Someone will ask her a question about X and she will answer about Y. I know why it is happening but the poor store clerk does not. So we talk to her a lot about focusing and staying on topic.

Speech Goal #2

Another fan favorite on the goals is for her to OPEN her mouth when she talks. For her, any anxiety shows itself in her talking as if her teeth are glued together. Try it now. It is very hard to be understood this way, and that is for those of us who do NOT have dyspraxia, so imagine how hard communication is for her. So she hears plenty of “Open your mouth, Elizabeth, breath and talk.”

Yes, I am sure she is having a ball with me on those days.

Speech Goal #3

Directly related to the above goal is the new addition of singing lessons for Elizabeth.  She loves, loves, loves music and loves to sing, so we contacted a wonderful lady to work with Elizabeth. It is not just singing, it includes:

• - Muscle work for her jaw and mouth.

• - Deep breathing exercises.

• - Focusing.

• - Projecting her voice.

• - Even reading, as they read and sing current songs.

Here is something to know, for those of you with older children: it is so important in my opinion to keep things age appropriate. Something that boosts their self-esteem is huge!

Elizabeth loves this and there is follow-up work for us at home! So win-win!

It is odd to think about it but we don’t GO to speech therapy in a pure sense anymore, we work on goals each and every day. (If you ask Elizabeth, she would say every minute.) But we do not have regular speech classes. We check in with Mary often, readjust a goal or two but we do most of our work in social settings now. Because that is where we find the need.

And that brings me up to the last update for Elizabeth.   

Speech Goal #4

Find the need. Once you understand your child, their disorders or needs, then you can start to find ways to help them. And as their needs change, so does the therapy. In our case, these needs lead us out into the world now. Into the world to talk, to engage in proper conversation, to communicate thoughts and needs. Actually, it is a pretty big undertaking now but this is where we find ourselves.

Speaking of which, I can hear Elizabeth loudly complaining that her brother took the T.V. and it was not his turn. So, I will go now to referee an argument, an argument that likely would not have happened had we not done all we did. We will keep working and encouraging because she is worth it all.

-Michele Gianetti 

Michele writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder and Dyspraxia. Follow her story since the beginning here.

Sometimes it is weird how you will look back on certain times in your life and see the struggles you had quite clearly.  But at the time, you are simply so in the moment that you don’t really realize just how tough it was.  I will use the example of how we handled the socialization at school.

When your child has special needs, their road in life is unique.  Filled with milestones that occur on their time frame.  One of the huge milestones in life is the biggest social scene called school, be it preschool or Kindergarten.

Elizabeth, as many know, has Sensory Processing Disorder or SPD and Global Dyspraxia.  Both conditions affect her ability to:

• Talk,
• Interact with peers,
• Be comfortable in public situations.

So, how to begin?

WITH THE TEACHERS

When we entered Elizabeth into her first preschool, we made sure to inform them of her disorders, giving them examples of how Elizabeth might act when overwhelmed or frightened.  But what we did not do was work with Elizabeth on how to act or behave.  I think we were so darned proud of the fact that she was in the preschool and wanted to be there and was happy to be there, that we allowed the teachers and staff to help us learn the ways this thing called preschool worked.  We learned to work with the teachers and truly, the pressure was off here as she was still so young.

We began to see just how social Elizabeth was when she entered her Pre-K program.  Here things got a bit more serious as they did:

• School work,

• Gym class,

• Participated in stations for learning,

• Prepared them for entry into school.

I think this time was so fun for Elizabeth, she loved being with the other children, but her language held her back a great deal.  It was here that we began to really rely on the teachers to encourage interactions and friendships inside the classroom.  Again, it is important to remember that we told them all about Elizabeth which is something that can never not be done.  But we also found ourselves asking about these buddies and friendships.  It is hard to watch typical interactions taking place around you when your child is not capable of those things.  But I offer out, that sharing your thoughts and feelings with these teachers can help tremendously.

How to continue?

WITH SOCIAL STORIES

We started reading social stories to Elizabeth, started discussing them with Elizabeth. For children with special needs, it is the repetition and frequency of things that helps them process information.  So with that in mind, we read the stories often.

We would at times:

• Adapt them to her situations at school,

• Write ones to fit her needs,

• Write funny ones to help make a point.

These stories are a wonderful springboard for a discussion (be it more one way than two way due to Elizabeth’s speech delays).  But the ideas and thoughts start to flow and that can never be a bad thing.

What to do next?

MEET UP WITH A FRIEND

Sure I could mean you meeting up with a friend to vent, but in this case I mean a friend for your child. J Yes, as much as this may send a cold wash of fear over you to read, it is something that we did at an early time.  It was not easy, it was not relaxing, but Elizabeth was happy to have the time with a friend.  Sometimes it went so well and other times I was hyper-aware of how uncomfortable the whole situation was.

But we tried it again. And we talked about it after the time was done. And we talked some more. All of which helped Elizabeth grow.

How to continue?

TALK, TALK, AND WHEN YOU ARE DONE … TALK MORE

The thing about social stories is that they are neat, tidy and everyone says everything just right. These are helpful and needed stories but I will say from vast personal experience, that never, not one time did something go just like a social story says it would.  There would always be some renegade person who would be in line at the store and instead of saying what the script said they would, they would say how pretty Elizabeth was or ask what grade she was in and then all bets were off as to the responses from there.

So as tough as those early socializations were, we learned that:

• Talking through the experience helped Elizabeth learn for the next time.

• Talking through what was good helped reinforce positive thoughts for the next time.

• Talking through events helped me be able to share my feelings and thoughts with Elizabeth and helped her understand her feelings as well.

Talking, in my opinion (ask my family) has always been a good thing!  Never underestimate the positive things that can come from spending time together talking and sharing.

So how to conclude?

THEY CAN ACHIEVE

Socialization is one of those things that you are part of, that you have grown with, and that you can continue to make gains with.  If you think about it, we are all never done growing in social ways with how we wish to present ourselves in certain situations, when making a presentation or even how to handle a disagreement.  So our children are simply growing as well.  We need to be there to help them take the next step that others take automatically.

• Use examples of everyday experiences to help them.

• Encourage expressions of any emotion.

• Praise them for trying.

• Encourage them if they fail.

• Let them know you believe in them, always.

I wish you all some great conversations be them, via communication boards, devices, full of short sentences or long beautiful ones … It all counts and it all matters.

-Michele Gianetti

Michele writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder and Dyspraxia. Follow her story since the beginning here.