She Wants To Be A Teacher

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This afternoon I sat in a room with other kindergarten parents watching our little ones perform songs they had learned throughout the school year. All those little faces beamed with excitement and pride, including my anxious little red head who near burst out of her wheelchair with enthusiasm!

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When the singing was finished, each child had a turn to say what they wanted to be when they grow up.

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Thinking about the future is always emotional for me when it comes to Olivia. I have trained myself to stay in the present and only focus on the here and now, when it comes to her. I live by the whole “take it a day at a time” motto, so when this part of the afternoon came about, I’ll admit, I was a bit anxious.

Olivia’s teacher gave her the Big Mack device that is used to assist in Olivia’s communication. She then asked Olivia,”what do you want to be when you grow up?”

Olivia responded, “I want to be a teacher.”

It was at that moment when Olivia’s educational assistant leaned in and said to me, “little does she know, she has been our teacher all along”.

I couldn’t agree more.

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I’m Thankful For This Guy

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Everyday I’m thankful for this guy. I couldn’t imagine going through this journey with anyone else.

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I blog a lot from my point of view as a special needs Mom, but it’s important for me to share that every step along this path has been shared with this guy; my best friend, my anchor (and sometimes my wings), the fella who stole my heart at seventeen and continues to be loving and supportive through all the twists and turns this journey takes us on.

When I decided I wanted to give the world a glimpse into our life; to educate and spread awareness about cerebral palsy, and the ups and downs of special needs parenting and how a family comes together to support one another, he was all in. He believed in my ability to communicate with dignity and truth.

Through every surgery and procedure Olivia experienced he was there with me.  When I needed to stay with Olivia in the hospital, he ran our other two kids to hockey and figure skating and took care of all the household responsibilities; on top of coping with his own emotions of being the dad who wants to fix everything, but knowing full well not everything is within his control.

I’m so happy we could celebrate him today on the day set aside for the unsung heroes.

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He sure is our hero and is the best Daddy to these three little rugrats!

Thank You For Being Her Friend

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When you are a parent, you hope that as your child grows they will form friendships and bonds with others that will enrich their lives. When you are parent to a child with special needs, you deeply want those same relationships for your child,  but fear others will have difficulty seeing beyond the large,  awkward wheelchair, your child’s inability to verbally communicate, and the struggles your child has in keeping up with others her own age.

There is no better feeling than when your fears are proven wrong. The moment you witness a child approach yours with grace, kindness and love.

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They don’t look at her wheelchair as something awkward or different. They embrace her for who she is and are eager to be a supportive friend. They giggle with her, even though she has not said a word, but they get her. They can feel what she is trying to say. They want her to be apart of everything they are doing and find ways to adapt their game so she doesn’t feel different.

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These are the beautiful moments I have always dreamed for her.

You Know You Are A Special Needs Parent When

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You know you are a special needs parent when:

1. You consider your child’s therapists and medical team as family because you spend more time with them than you do your own.

2. You live your life by your calendar. Medical and therapy appointments and meetings with teachers or other community services are a huge part of your daily life.

3. You no longer can phone the teenager in your neighborhood to babysit at the drop of hat. Nope, you need to hire a quality trained respite worker. Someone who has been taught to deal with seizures, has had professional training in transfers, can apply proper stretches and routine exercises with your child, is confident and skilled with tube feeding, is patient and compassionate to your child’s needs. Yes, if you want to have a date with your spouse or a few hours to yourself, you book your respite worker weeks in advance!

3. You dread IEP meetings.

4. You can’t remember the last time you did anything for you. Me time doesn’t exist!

5. When you wake up in the morning, your brain buzzes with things pertaining to your child and at night, before you shut your eyes, it continues to buzz with those things.

6. Your sleepless nights didn’t end with the infant stage, no you haven’t slept through in years!

7.  You find yourself more emotional than ever before. You experience tears of joy and sadness daily.

8. Finding time for your other children can sometimes feel like a juggling act, so you experience great amounts of guilt.

9. Some of your closest friends are probably special needs parents too.

10. You have stayed with your child in hospital so many times that when you take them into emergency, you take your emergency prepacked suitcase for “just in case”.

11. You hate hearing, “geeze, looking at her, she doesn’t look like she has a disability” or better yet, “just wait and see”.

12. You would like to go into a store or shopping mall without a million eyes gawking at your child in a wheelchair.

13. You hate the word retarded and want to throat punch anyone you hear using it.

14. You NEVER use the word milestone when discussing your child’s progress.

15. You celebrate every success your child achieves.

16.  You want nothing more than full equality and acceptance for your child.

17. Discrimination and segregation are your worst fears for your child.

18. You speak up! You become the powerful voice of your child and develop a strong skill in advocacy.

19. Educating others on your child’s special needs is your passion. You know in order to change the stigma, you need to educate the ignorant.

20. You become a blogger.

An Open Letter To The Bus Company

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To Whom It May Concern,

I’m the mother of the child you thought could be overlooked today. You know the child, the one who was suppose to get on the bus with all of her classmates to attend a field trip that she had been looking forward to all week.

And why didn’t Olivia get on the bus? Oh that’s right, because the accessible bus the school had requested from your company apparently was out of service, however you failed to communicate this with school faculty ahead of time. Yeah you thought it best to just go ahead and send one of the “regular” buses.

Well let me tell you something.  While Olivia watched each child get on that bus, patiently waiting her turn, then oh that’s right….she couldn’t….her little heart broke. Yes you read that right. YOU BROKE MY DAUGHTER’S HEART! She watched as all of her friends left…without her.

Olivia was left behind, waiting for ANOTHER bus…an accessible bus. Do you know she cried? Do you know that entire time waiting, which probably felt like forever to her, my little girl cried out of feelings of exclusion.

How does that make you feel? I hope you feel like shit!

I’m aware our principal stressed her frustrations to you. (You are goddamn lucky it wasn’t me on the other end of that receiver) AND I’m aware you have apologized for the “misunderstanding” and have offered to make it up to the class. Well isn’t that big of you? Great.

Well you will forgive me if I can’t just let it go so easily. Instead I am taking this opportunity to help you understand the message of your actions.

Throughout these last four years of Olivia’s life, we have strived to achieve full inclusion for her in EVERY WAY! We have worked diligently for others to look beyond her disability and to see her! We have advocated equality at every corner. Olivia has participated in every activity our family participated. We sent her to a school that promotes full integrated classrooms. So today, with the “misunderstanding”, for the first time Olivia felt unequal,  excluded, and different.

I hope this message finds you and you read through these words VERY carefully.  I hope next time, if there is a next time; that you will utilize your communication skills in the form of a phone call.  It’s that simple. It would have taken you five minutes to prevent the emotional ride you sent my daughter on this morning. Please remember, an ounce of compassion goes a long way!

Sincerely,
Olivia’s Mom

PS This is the smile I want you to remember.

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Communicating At A Glance

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In previous blogs I have talked about my daughter being nonverbal and how being nonverbal doesn’t always mean unable to communicate.

Communication can be accomplished in many different ways,  such as through body language, verbal language, sign language, eye gaze interpretation, switch activated devices that “speak” for an individual, and this is just to name a few.

When our daughter Olivia was diagnosed with Cerebral Palsy and we had learned how muscle control and cognitive function can be affected as a result of this condition;  we were eager to assist in her development of the abilities she could strengthen. The first step was to understand how Olivia communicated.

We didn’t know if verbal language would ever develop, but what we did know was how alert and focused Olivia was within her environment. We quickly discovered her ability to control her eye gaze. She could track objects easily and appeared to pause on objects she was most interested in. Olivia’s speech/language therapist and occupational therapist suggested we build communication from this.

We began by giving Olivia the opportunity to choose between a “preferred item” and a “non-preferred item”. For example, her therapist presented her with a piece of tissue and a bright red ball. This exercise was to determine if Olivia understood her ability to choose something she really wanted, by looking at the object she favored most. It didn’t take long for her to pick that bright red ball over a measly piece of tissue. This was a profound moment! We learned that not only did Olivia completely understand the instruction of the exercise, she could also make choices!

Olivia has been practicing Eye Gaze communication for the last three years. Because she communicates so often using eye gaze, Olivia’s facial expressions have become more animated and bright. She will often smile for a “yes” answer or become expressionless for a “no”. We have learned to focus clearly on her eyes when we interact with her; building upon our ability to interpret what she is trying to tell us.

If Olivia has taught us anything it is this, open your eyes to the world around and you will hear what I’m trying to say.

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Counting My Blessings

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I don’t know another person who gets as much enjoyment out of fishing, as my daughter Olivia. I mean, c’mon….does this picture not make your heart smile?

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Everything Olivia tries or is involved in, brings awesome smiles like this one. It doesn’t matter if we are creating art through finger paint or heading full speed down a park slide; she enjoys every beautiful moment of life.

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Life…hmm, yeah, precious and yet something easily taken for granted.

Each memory we make with Olivia, I remember to be thankful. I remember how we nearly lost her; how we prayed for God, the Universe, whatever greater power that exists, to keep her with us.

Thank you! Thank you! Thank you, for this wonderfully sweet and happy child. A little girl with a gifted smile and contagious spirit. A child that has been a teacher to us; educating our minds to always have hope, to recognize each individual’s abilities, and that living “outside the lines” is a wonderful life to live!

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When I look back to the days of doctors telling us to be prepared for the milestones she may never reach and the heartbreak that may follow, I can’t help but wonder why say those things at all. I mean, I get the whole “prepare for the worst” case scenarios, but c’mon…this wasn’t, nor ever will be, the worst.

Our lives are richer and happier everyday because Olivia gets to be our daughter. I cherish that gift. We are completely and wholeheartedly blessed!