I don’t always let it in.  

Those who have special needs children know what I mean by the “it”.  

The “it” is the realization and recognition of just how hard each day can be for our children.  Just how much they have to work each day, just to get from morning to night.  I think if I let “it” in daily, I would drop to my knees and want to cry because I would love to give Elizabeth the gift of easy days, days that you and I have, days that typically developing children have.

Days where she can say “yes” to playing tennis with her brother, instead of working hard to swing the racquet.

Days she can say “yes” to a movie, instead of having anxiety or days that she can take the car and drive somewhere instead of talking about how she will one day learn to drive.  You know, I am sure, all about the easy days you would wish for for your child.

“It” is a lot.  “it” is the biggest small word there is and I let “it” in this weekend.  Probably because we had a quiet weekend, where we could do anything we wanted and it was then that I realized our son had 17 things he wanted to do and Elizabeth and I had trouble agreeing on some things we wanted her to do.  Mainly because of her dyspraxia.  

So here was our son zooming off to his own things and over here was Elizabeth slowly agreeing to do some things.   She did participate well in what she planned and, she did have fun, but the motor planning involved is tiring and at times overwhelming.  Her sensory processing disorder or SPD, affects her participation as well.  

But Elizabeth and I have spent many an hour talking about trying things, why trying is a good thing, why saying an “NO” right away is off-putting, why we ask her to try and it is because of this talking that she know we are there for her, to help her and that we believe in her and we want her to be with us in all we do.  It was right then that I let “it” in and my heart hurt, my eyes teared up and I wanted to scream in frustration that fun days are still work for her.  That she has to work all the time.

And she tries….hard!. 

And she works hard!. 

And she is succeeding.

But it is work.

 I had someone ask me a question at a lecture I was giving and it was Would you ever wish Elizabeth was like your other children? I remember my answer and it was Would I wish she was like my other children?, NO, I would not because the gifts of Elizabeth are amazing in our life,  Her love, gentle ways and peacefulness are wonderful.  Her love of life is contagious and she is our greatest teacher about life.  So, No, I would not wish this but for her, to have the typical neurological system of her siblings?, to have things come to her easily? to take this hard work from her?  Then YES!, Yes, I would wish it.” “For her!”   I always remember this question because it was more honest of a question than I have ever had asked and it really made me think.

I share this now because “it” got in this weekend. and after such an emotional time I want to share because maybe somebody needs to read this and know that they are not alone, that someone else is feeling the same thing.

 Elizabeth always know that we are so very proud of you, each and everyday.  That you aee so special in your strength and drive and that we love you and believe in you so very much.

I wish you all a peaceful week.

Michele Gianetti author of Elizabeth Believes in Herself.

I was just having a conversation with my friend this morning and as we talked we got to a story about her son. He has special needs and has through the years gotten pretty good at “talking” about his feelings but not REALLY getting to the core of an issue or problem, when they are big ones.

She and I found ourselves discussing the importance of really, honest, productive communication. Sometimes it is hard due to the anxiety the person who is talking has or due to the struggles that the person hearing the conversation has, that can be a big player in the success of communication too!

You and I can probably both agree that there are just some people with whom you can REALLY talk, who just get you and others who are a bit harder to confide in. I, myself, am a big proponent of talking( You can ask my husband about this one!) communicating and sharing.

I have always stressed to my children the importance of talking and honesty. But it really does take both parties on the same page to be successful in a communication.

Flash to the phone call I got a bit ago from the school about conference night and how we need to schedule on line and how we get 15 minutes and how we need to be prompt as we begin our time and end ON time. Kind of gives you bit of anxiety already doesn’t it? I didn’t have to schedule one for my son . But it got me thinking of the conference times I had when Elizabeth was in school.

As you may know, Elizabeth is my daughter with special needs, she has Sensory Processing Disorder (SPD) and Global Dyspraxia both disorders require an open mindedness and a willingness to listen, process and learn. There were many times that we needed to teach the teacher.

So communication, good honest communication became the goal.

It became what we strived for in any and all conversations, written communications or emails. I

Flash to conference nights and IEP meetings, where nerves played a role. Where plans had to be talked about and where honest assessments had to be shared.

I found that good preparation for any and all times I spoke for Elizabeth was the way to ensure that all things I needed to say and wanted to say were said. I would review my notes, any therapist notes, communications from the school and anything I noticed at home.

I came prepared.

I also learned to come prepared whenever I am representing Elizabeth’s best wishes and plan, even now as she is 25 years old. She and I will talk and make plans together, but I am there if she cannot advocate for herself to the degree needed.

So if you are facing a conference night, talk with a teacher mid term or if any issues have arisen that you need to talk about to your child’s teacher, please prepare well, read notes, IEP’s and the like, represent your self and your child well, breath and know once you have prepared well, you are ready to go.

I wish everyone a peaceful week!

Michele Gianetti author of “I Believe In You: A Mother and Daughter’s Special Journey”