Vision Therapy Update

So it is official, we are celebrating the one-year anniversary of Elizabeth beginning vision therapy.

I think because we started this therapy a bit late in her life, we are truly old hands at doing pretty good follow up at home, so even though it has been a year, we have actually only gone for adjustments around each month and a half. And we just did the work when we wanted.

I told everyone that Elizabeth loves doing this therapy and that still holds true. She absolutely never, not ONCE has said no to therapy time or even the slightest hesitation to do it. I have not been able to make this statement about really any other thing we have done. And I am not sure why other than that her eyes must have bothered her enough ( dyspraxia) that the promise of relief from tired eyes via the therapy made her agree readily!

In any event, I am excited to report that she reads well now!

We have a friend who is working with her on her reading because as all of you may know first hand or been told by others, our children typically do better with others than with their parents. Truthfully, I just muddy the water.

I know it.

She knows it.

Any and all therapists know it.

So, with that said our friend is reading with Elizabeth twice a week for an hour and in that hour Elizabeth is reading out loud for the great majority of the time.

She is sounding out words! Which is new and wonderful as those with dyspraxia typically memorize their language and not sound out words.

She is reading at a wonderful cadence!

She is comprehending what she reads as evidenced by her answers to questions about her reading both written and verbal ones.

I am ecstatic! It is just wonderful to see this growth in a skill that she will have a need for forever!

And here is the kicker, she does NOT complain that her eyes hurt or ask to stop as she has always done prior. She sometimes would cry that she needed to stop.

So, imagine how wonderful it is to be in the other room and her words from a book!

I love that the hard work we put in this year has created this kind of good things.

For those who have read my books, you will recognize our beloved therapist called Mary. She has been with Elizabeth since she was 2 years old and is like our quarterback and has helped us when Elizabeth’s SPD (Sensory Processing Disorder ) and Global Dyspraxia were near to overwhelming.

Well Elizabeth was having a session with Mary and it required reading a paragraph out loud to Mary. According to Mary

” Elizabeth’s reading and the understanding of what was being discussed and read was phenomenal. I actually had to ask her to slow down her reading rate to articulate clearly”

So how exciting is that?

I shared it with her vision therapy team when we went on Friday for her session.

Talk about happy people when they read it.

I am always so excited to see the successes that Elizabeth has and to think that each one represents that she can have that much of a better life and that it is one more thing that she doesn’t have to have anxiety about. And she feels proud of herself.

We all want nothing more that that for our kids.

I know we are a work in progress, I get that. But the good needs celebrated and celebrated well.

The Holidays are RIGHT on the Horizon! Time to Plan Well!

For those who have been following my recent blogs, I know I spoke about how nice it was to have Elizabeth enjoying her own schedule again. This was after a summer and early fall of pretty much nothing but adjusted schedules, changes and time off.

In the words of Elizabeth…”I have my life back”

And it has been nice….really nice.

When we do her schedule together each week, she can put down all the information easily as it is now a nice routine.

Woohoo!

Then I just had this thought and it was… the Holidays are coming.

Which on one hand is great. I mean who doesn’t love the feel of the holidays, traditions, family and the like? But on the other hand, is the truth of the holidays for those who have a child with special needs in their world and that is…

The holidays mean change. For us, I want to add…AGAIN

This means the days we are enjoying in a nice rhythm will not be in that same way soon.

This means that the days will take on a new shape with different obligations, things to experience and do. And while this may be a good thing, it doesn’t mean it isn’t an adjustment that can be really hard for our children.

So, when I think holidays, I think good stuff and then IMMEDIATELY think about the tough stuff.

I wish I didn’t do this but life with our beautiful Elizabeth has taught me otherwise. So being prepared early and ready for the changes is actually the best way to go about this fun season.

At least in my opinion.

So back to Elizabeth’s nice schedule. Something I learned on the tough summer we had was that even though she is 25 years old, her disorder of global dyspraxia makes organizing and planning her thoughts and actions hard. So when she is faced with open ended time, she is really not the best at figuring out how to fill it effectively and needs help with this.

So this summer all the open ended time actually created anxiety and this is something I learned we can offset with some planning. More detailed planning than just a daily schedule. Planning that is reflective of her current interests and activities. Meaning, that since she likes to work, when her work with the schools is not available because it is the holidays and they are off, we need to find volunteer options or maybe work another day or so at her other job.

She loves to sing and do her workouts with her trainer, but when those are not available, again, due to the holiday break, we need to find something to fill these spots that challenges her. Maybe a new workout on the computer or another session with her reading tutor.

I guess the point is that for Elizabeth, see the future changes coming, and taking the right actions can help her feel less adrift and more anchored with an adjusted schedule. Maybe not the one she loves so much, but a good one nonetheless.

I don’t want anyone to see the holidays and want to run for the hills. But maybe see the holidays coming and take a moment to really think what you liked and didn’t like about last years and what you did or wished you did last year or even what you wished you had not done. And then think about how or what you want for this year.

The gift of those darn red and green decorations going up so soon is that it is like a warning flag of what is coming. And the other gift is that we can use that warning to plan as best as we can for our children who need that extra help to adjust and have happy times.

The other thing is that with nice, advanced planning and hopefully the peace it brings to your child will then bring peace to the family because I speak from experience that when Elizabeth is anxious or unsettled it does affect the family and our home.

The calendar says November, so now is a really good time to do some thinking and planning.

How Are Your Records for the Year So Far?

I don’t know how you feel about it but I for one was somewhat stunned when I got the call from the school about conference night. It is coming up in mid October for our school system. The call went on to say how to schedule and that there were in person and virtual options available.

I think two things come to mind to me as I got this call and they are:

  1. If you get so caught up in life and doing all that needs done in your days, you can run the very real risk of not keeping an eye on the calendar for notable dates like conference night
  2. Those who have a child with special needs, can find the effort to stay on top of everything even more so than those with neurotypical children.

Why is conference night so important?

To me, when Elizabeth, my daughter with special needs, was young, conference night was our FIRST time to really talk with the teachers about Elizabeth, her needs and her IEP goals. I have since learned the importance of talking with the teachers and the school often and regularly but for many conference night is still their first real talking time.

With COVID and the effects of the pandemic on the world, education is taking quite a hit. From the stress of the pandemic on our children’s mental health to the vast shortage of teachers, our schools and teacher are being challenged daily. Now add in the specific and very real needs our children have and the situation is quite a complicated one.

Now, let’s be honest, working with the schools to meet our children’s needs BEFORE the pandemic was hard work and not always successful. But now the hard work is even harder and this is why conference night can hold so much more weight than it did prior because as parents and caregivers to these children with differing abilities we need to make sure to represent them well, advocate for their needs strongly and make sure that time doesn’t pass by without goals being met

So with regard to conference night:

Prepare ahead of time. Any notes you have made during the first month or so of school are important. That is why I asked the question in the title. These notes of the good, the bad and the wonderful can help you remember details you might have otherwise forgotten and help you plan what you want and NEED to talk to the school about.

Take advantage of the time. Ask your questions.

Review your IEP prior. Make notes of questions or concerns you have.

Bring another set of ears if you are able/allowed. Not always will you remember what all is said’

Ask for another time to continue talking if you can’t cover all the important areas you wanted to.

Don’t feel bad for using every minute of your time. Even if the hallway is filled with the next parents in line.

Good luck as you plan and organize!