Tag Archives: special needs

Let the Celebration Begin

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I heard the yells and the cheers as I finished swimming my lap of the pool and while this would not be unusual if I were in a race, but I was not in a race, so the cheers rang out quite noticeably.

It took me a few seconds to figure out the exact reason for the cheers. It was all for a little three year old girl who just decided that today was the day she was going to swim a complete lap of the pool. So her dad was walking next to her in the water, cheering her on. Then her siblings walked along the side of the pool, cheering her on. Soon the off-duty life guards did the same and then when that little red head popped up at the end of the pool, she smiled so beautifully, her hair kind covering some of her face, out of breath but PROUD. And the cheers continued. Continue reading →

IEP Thoughts

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As sure as the first flowers are arriving, so IEP time.
It almost sounds celebratory….but for those who have a special needs child, we know it is not like that.
I know we have an IEP meeting scheduled for Elizabeth on May 29th.
She is 20 years old but because we chose Option 23, where she is technically still under the auspices of our local school system until the age of 22 years old.
So with this in mind, the local schools and the college program she is in, meet to form the new IEP that will guide her into the next school year. So even at this age, we are looking at the IEP and making changes.
So with about 16 years of IEP prep times, meetings, re-evaluations and IEP adjustments, I wanted to tell you how I am approaching this meeting:
-IF Elizabeth was given a standardized test right now, I know her scores would not be what we want to see. But, if we were talking with her and helping her organize her thoughts about things like budgets and safety scenarios, she would answer really well.
So my take away, is to focus on how well she can do when her needed supports are in place. Because that is what she truly needs and how she does best.
So when an IEP time comes, I take a good, truthful look at things like this and gain strength from recognizing her growth.
-IF she did not fully reach a goal and it reappears on the IEP, instead of feeling defeated ( as I would have many years ago) I tell myself to look at the gains made toward the goal itself. Meaning did she do more steps toward independence? How many steps did she meet?
I try to see the gains made not what is left until the goals are completely met. This way I try to see what she has accomplished instead of what she did not. And I have learned over the years just how important it is to do this and keep shooting for future successes.
-IF I have any real concerns then I do not hesitate to bring them up or if I have any goals that I know are more in line with Elizabeth’s wishes then again, I do not hesitate to address them.
Often, goals and experiences can be geared on a default setting kind of mind set, meaning, that they are not as tailored to someone’s wishes as much as, I feel, they could be.
-LASTLY and do not do this often, I allow myself to think back to where we started and then think of where she is right now. I do this to keep perspective, to see how far she has come and to know she will continue to succeed. Will it be at the pace of a child who does not have special needs? Probably not. But will she continue to succeed? I truly believe ….ABSOLUTELY
Trust me, I know how hard the experiences are. But preparing a good mindset before and allowing yourself to feel whatever you feel after the meeting is really important to successfully getting through another IEP season. And just like the early Spring flowers that are here then fade away, the IEP season does the same thing.
Good luck to all!
I wish everyone a peaceful month and I will let you know how our meeting goes Continue reading →

My Letter To Santa

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Dear Santa,

I know have not written to you in quite a while.  I am not sure if you remember me but I am now the mother of a child with special needs.  I used to ask you about Mrs. Claus and the reindeer but now I  have quite different thoughts.

We have a daughter who is really quite special, she is our middle child.  Kind of bookended between two loving and supportive siblings.  Although she has special needs and  has as much love as we can give her, we cannot give her what we want to and that is a life that is typical.  A life not filled with hard work each day.  A life where she does not have to be afraid or scared.  A life where a trip to the park or zoo is seen as fun and exciting, not as scary and full of anxiety,  we want that for her Santa, but try as we might we cannot take away these disorders.  She has Sensory Processing Disorder and Dyspraxia, Santa, which means that each day is work for her.  She must try to figure out how to do each new thing, try to organize her thoughts and activities to move from one task to another.  She works hard each day.

I know we have tried to make her life as fun as possible, Santa, but it is hard for us to think that her one chance at a carefree childhood was spent in therapies and working so hard to catch up.  With that thought in mind, I will begin my wish list.  I ask for the strength to teach her well this year.  To talk gently and to think first.   I also ask for the forgiveness when I don’t teach, talk or think the way I should.  It is just that these disorders do not quit.  I know we have done the best that we can with each day but some days Santa, are just SO bad.  I ask that I can let that day go and move on with strength to the next day and try my best again.

On this journey, we have met so many therapists and friends, and I ask that somehow they know that their life’s work had made a difference in many many lives and that we thank them for sharing their gifts with our child.

It is very challenging to raise our child in a world that does not always accept those who are special. I must ask now for you to somehow give the world tolerance and patience for those who do not fit into the world’s definition of “normal”  I hope those who see us working with our child in a public place can place a smile on their face, that they will look at us and want to help us not judge us. Maybe you could let them know that asking us what is wrong and how they can help won’t upset us…it may just make us cry in relief.  I know that is a very big request but I wanted to ask.

I love my child more than I can say to you or anyone else who asks me.  She has wonderful gifts Santa!  She has such love and kindness.  She has taught us all so much about what love really means and we are so thankful God has entrusted her to us. I ask a happy Christmas for her and all the other special children this year. Parents of children who have special needs face so much.  I ask that somehow they know just how special and wonderful they are.

I know when you read this list you will have wished I asked for a toy and a book, but I thank you for reading my list. and I know you will do you best for us.

Just like we will do our best for our children.  Now…next year…and forever.

Thank you, Santa

Love,

Michele