Tag Archive | special needs dad

Preschool Orientation

I realize I’m long overdue to give an update on Vivian’s preschool experience.  Mine, as well.

Orientation.  Gratefully, my husband came with me.  I walked in and couldn’t help but look around.  I tried to see all the other children’s disabilities.  I don’t want to sound selfish, I did this to look for someone similar to Vivian.

I was desperate to find a parent who feels the way I do.   Who’s going through what I am.  I’ve basically given up.  I take each day as it comes – doing my best to keep trudging forward.  Doing my best for my daughter and family.  This is all I can do.

At orientation I find myself thankfully completing paperwork.  I notice Viv head towards a boy with cerebral palsy, who wears a helmet.  As she looks at him with her head cocked sideways and reaches to find out what’s under there – I’m filled with pride.  I hope his parents are happy someone is being so gentle with and paying attention to him that they are proud, too.  We of course stop her from taking off his helmet, but I think it’s a good first step.

There’s a big smart board in the room.  It’s the first I’ve ever seen, but it’s a huge touchscreen for kids.  We were waiting for our little miss technology guru to figure this out, but she had to be shown it much later.  We also learned she would tolerate cube chairs for circle time.  Good luck getting her to stay still was all I could think!  Dave and I observed her for a while.  We watched as she took to a brunette girl in her 20’s – much like her regular babysitter, Becca.  It was great to see her making a connection – although we’re not sure the girl knew what to think of Vivian taking to her so well!

A week or so later, I sent her to school with a little list:

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I don’t think this was bad!  She had a few days of summer school and then it was ready for the school year to begin on August 26.

Independence Day

Vivian certainly lived up to this holiday’s name today!  I made sure today was a mother/daughter day.  We played outside, went for a walk, ate breakfast and lunch together.  When it was time for Dave to come home from work, I wanted to (hopefully) surprise him.

Vivian does everything on her own time. If we try and force her to do something, most times she ends up resisting for longer out of fear. We have had this walker at the house for a few months now. We have gotten her to use it for very short walks around the house. Never would she walk without our hands over hers – just as she won’t when walking without the walker. We knew not to push her too much, but she was enjoying taking walks up and down our court, that I decided to try using the walker outside.

Sure enough she started walking, while I slowly moved my hands up her arms, then down to support her trunk. Once she was comfortable with that input, I then went to simply holding the back of the walker. This is the closest Vivian has ever come to walking independently! Little Miss did not want to head towards home, she wanted to keep going. A temper tantrum in a neighbor’s yard ensued, but luckily her daddy had just gotten home and was able to coax her to turn around. We finished our walk and went inside to cool down. We ended up going out again this evening – here is a video of her walking all on her own!

All I can say is I am so incredibly proud of her! I have been struggling, wondering what the next step will be in terms of her physical development. Now I have my answer and feel she is one step closer to physical independence!
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Happy 4th of July!

Maybe next year…

This phrase has been on my mind a lot lately.  Since around Halloween, actually.  I loved getting Vivian dressed up in her costume, but it was bittersweet.  I took her out in her stroller, just around our cul-de-sac.  At the second house, I had to hold back tears while telling them “she would say trick-or-treat if she could.”  Maybe next year, I thought.  I did think it was pretty cute she tried to give the candy back, possibly because she was just mastering the put in/out skill.  Almost a week later came her birthday.  We had a small dinner with close friends and family.  At least this year she was able to open up her presents, although she doesn’t understand what her birthday is.  She clapped when everyone sang her “happy birthday”, but I had to blow out her candle and she didn’t want anything to do with her cupcake.  Maybe next year she’ll understand what her birthday party is for.

Then there was Christmas season.  We went to my husband’s company party, which is held at a bowling alley.  I recall thinking last year that it will be so much fun this year, when we will be able to bowl with her.  Not quite.  Again this year, she crawled all over the place, only sitting still to watch a movie and eat.  Bowling?  Maybe next year.  Our next big day was Christmas Eve.  We went to our neighbor’s house and ate appetizers, opened gifts and had a nice time.  As we were leaving, the other kids started making reindeer food.  A little while later, while putting her PJ’s on, the tears started.  I had really thought this Christmas was going to be different.  Dave asked me what was wrong and I answered “she should be making #$!#@^& reindeer food.”  Maybe next year.  I will admit that I cried myself to sleep Christmas Eve.  I kept thinking how few Christmas’ we are going to have with her having a true understanding of Christmas.  Then I would get upset with myself, thinking how selfish I was.  At least I would wake up in the morning with a happy, healthy little girl and get to enjoy the day with her.  Many others won’t get that with their child.  I am fortunate enough to have a wonderful husband that assured me that although she couldn’t make reindeer food, she is extremely happy, loves Toy Story and has a lot of people that love and care about her.  He held me that night and let me cry.  He also agreed, maybe next year.

Christmas day was much better for me.  It was nice and quiet and I enjoyed spending time with our family.  As I reflect on this past year, the one word that comes to mind is pride.  I am proud of all the accomplishments Vivian, Dave and I have made this year.  Vivian truly has come a long way this year, sometimes it’s just hard to see when it’s right in front of you every day.  I have read that around ages 3-4, children with incomplete myelination make a turn for the better.  I pray and pray that this holds true to Vivian.  Only time will tell, but I hope that this year there won’t be quite as many “maybe next year” moments.

Thankful

On this Thanksgiving Day, it is typical to give thanks.  Today I am especially thankful that I am a mother to a special needs child.  I choose to use the words “it could be different”, not “it could be worse”.  I will never pretend to know what it’s like to have a child with a more severe disability, to never be able to receive a hug or kiss from my daughter or to never be able to hold my living, breathing child.  There are mothers that have lost their children, before an ultrasound picture or after delivering at full term.  I have the utmost respect for them.  There are mothers who will never get to see their child crawl or walk, who will not receive an emotional, physical or verbal response from their child.  I am thankful for everything Vivian gives me on a daily basis.  I consider myself lucky for what I have received from Vivian thus far.

Mothers are some of the strongest people I know and the obstacles that some have endured are beyond triumphant.  I am thankful for all mothers of special needs children and would like to share this poem I came across recently:

Some Mothers Chosen By God
By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth, son. Patron saint, Matthew.”

“Forrest, Marjorie, daughter. Patron saint, Cecelia.”

“Rudledge, Carrie, twins. Patron saint…give her Gerard, He’s used to profanity.”

Finally, He passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious. “Why this one, God?  She’s so happy.”

“Exactly,” smiles God. “Could I give a handicapped child a mother who does not know laughter? That would be cruel.”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world and that’s not going to be easy.”

“But Lord, I don’t think she even believes in you.”

God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps, “Selfishness? Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child who is less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a “spoken word.” She will never consider a “step” ordinary. When her child says “Momma” for the first time, she will be
present at a miracle and know it! When she describes a tree or sunset to her blind child, she will see it as few people ever see my creations.

“I will permit her to see clearly the things I see….ignorance, cruelty, prejudice… and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her patron saint?” asks the angel, his pen poised in mid-air.

God smiles. “A mirror will suffice.”

Happy Thanksgiving!

Anniversary

I will never forget when I was 15, telling my mom that I was going to marry someone with nice hair that wears a suit to work every day.  Funny how things turn out!  I ended up with a man that wears work boots, jeans and the same shirt to work every day and who affectionately refers to the hair on his head as his crop circles.

I feel blessed today to celebrate six years of marriage to this wonderful man, Dave.  He works hard to provide for our family every day and he works hard to be the best father to Vivian.  He of course wanted a boy and wasn’t quite sure how he would act with a little girl, but now he wouldn’t have it any other way.  His baby girl is wrapped around his finger.

I have been asked whether our situation with Vivian has been hard on our marriage.  I honestly think it has made it stronger.  We are a team and a united front.  We are fortunate to each have sets of parents with strong, solid marriages that provided a great example of how marriage is supposed to work.  Our extended family and friends provide great support for us and we are grateful for that every day.

Happy Anniversary, David!  I love you and thank you so much for the greatest gift of all – Baby Girl Vivian.