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So many questions, So little time….

5 Jun

I was just the subject of a college paper my boy’s girlfriend had to write. Nothing like being under a microscope ! I’m posting the questions and my subsequent answers because I’m thinking it may just be a great jumping off point for discussion:

Rose Festival Champ Car Races

1.What are some of the challenges you have faced as a parent?

Being the mother to a special needs child with health issues is by far the most challenging part of being a parent. Knowing just how much leash to give your kids, and how not to swoop and smother them as they find their own way is an ever-present challenge.

2. Have you ever received any type of parenting education?

No. We didn’t even go to lamaze classes 😛 Which is fine, because there is no set of rules when it comes to parenting…only guidelines and case histories. When I first came home from the hospital with my special needs baby, I ran to my bedroom to pick up my dog-eared copy of “What to Expect When You are Expecting” ….. only to find a brief paragraph on what to expect when one gives birth to a special needs child…. the paragraph told me to seek professional help elsewhere…. so much for baby books!

3. How has parenting changed as your children have grown and developed?

Not sure how to answer this one…. parenting perceptions have changed societially (i.e. Tiger Moms vs. Baby Wise, etc….) But I’m not sure how my own personal parenting style has changed. I suppose my role as a parent has evolved from primary care giver, to primary first aid boo-boo kisser to primary philosophy giver, taxi driver, and finally primary loan giver. I look forward to the roles changing up again to friend, babysitter, and finally child to my children…..circle of life.

4. Did you have accurate expectations of what it would be like to have children before you became a parent?

I believe so. I was prepared for the work aspect , but I did underestimate how much joy I would feel as a mom raising fun kids.

5. How do you balance family life with your other interests/jobs?

I gave up a successful career as a performer to raise a family. In order to keep my life in balance, and keep a “hand in” I do an occasional symphony performance or drama or recording gig just to keep my skills in check, and to keep me from feeling like I never get to do what I want to do anymore. I do one big show every other year.

I also run a Social Media marketing boutique out of my home. It allows me to work from home and still go on field trips or make the occasional frantic run up to school with a forgotten assignment or lunch. Best of both worlds!

6. What kind of support do you receive from family, friends, schools or the community as a parent?

Because I live so far away from my family (my parents divorced and I was moved away from the midwest in my teen years) I did not have the usual benefits many of my peers had raising their kids. My in-laws are 40+ years older than my husband, and they were not viable grandparents to help raise our kids. Both of my sets of parents live too far away to fill the typical grandparental roles, so my husband and I had to wing it when it came to baby-sitters and weekends away from the kids. My kids don’t know any different, but I do. I grew up spending every weekend at a different set of grandparents…my grandparents literally fought over who got to watch my brother and I as we grew up.

As the parent to a special needs child, I was amazed at the amount of support the Early Childhood Preparatory programs Oregon had for Caitlin. From the time she was 2 weeks old she was eligible for services, and was regularly visited by nurses who checked in on her, gave her physical therapy and helped me navigate through the public schools.

7. Is there anything you don’t like/don’t enjoy about being a parent?

I tire of the monotony of cleaning… It’s a never ending conundrum. I bore easily with volunteer moms at the school who complain about their husbands. I hate neighborhood gossip. I hate having to play momma bear to my special needs child, as I continually watch parents leave my child out of other reindeer games.

8. Has your philosophy on child-rearing changed as you have had more than one child?

I don’t believe so, but I’m sure it did. I often joke that my bonus child (my step-son from my husband’s first marriage) got the best version of me as a mommy. I was all of 25, just did a year as a theme park princess, and knew all the best ways to engage a young kid. I had patience for days and knew better than to push my luck, as our relationship was more environmental vs. biological. I literally spoiled him into submission, using treats as both motivation and reward. I also had to be ultra careful not to do anything that might be controversial. For example, if he had a nightmare and wanted to crawl in bed with his daddy, I would immediately leave the bed and go sleep on the couch, because the divorce was anything but amicable, and I needed to make sure that nothing could be twisted in a way that would hurt my husband’s time with his son.

My first born, got a more maternal version of me…we co-slept for the first year (much to my in-laws dismay) She was my shadow, and still is, at 14. She never left my sight in a mutual way.


And my youngest got a much more pragmatic version of me. With all of her health issues and brain delays, we navigated the world much differently…. much more cautiously and with purpose.

But….really, I think it is that each child brought something different to the equation, not necessarily that my child-rearing changed….For example….if Kelly as a toddler ever broke free and started running down the street, she would always look back and make sure I was chasing her. Caitlin, on the other hand….NEVER looked back. I was paranoid that Caitlin would go home with a stranger, because she just didn’t know any better.

9.What is your favorite part of being a parent?

There is a sense of accomplishment when I feel we are parenting well. It’s not always the case, but when we are sitting around the table talking over dinner and I see/hear the processes we’ve put in place working, I feel great about always putting my family first.

10. Is there anything you would change in your child-rearing if you had another child?

I’m not sure I would…..I’m sure there is something…..I would try and get help to be better organized, so that I could pass organization on to my children.

11. What are 1 or 2 pieces of advice you would give someone before they become
parents?

Go do everything you want to do in your life….travel, experience, do, be… make sure that when you have kids it is because you can’t imagine life without them, not because you think it’s time to go down that road. Don’t put an age on parenthood. I wanted to be a young mom…. I now wish I’d waited a bit and travelled/experienced more.

12. What has been most rewarding part of being a parent? What do you get out of being a parent?

I have front row seats to the best reality show on earth. With a vested interest in the characters, and a cameo role here and there 🙂

13. Is there anything you’ve learned about yourself from being a parent?

I’ve had to deal with my parent’s shortcomings along the way. I realize now that my parents did their own personal best as parents, even if they hit well short of the mark sometimes. My youngest daughter is so much like myself that I find her especially revealing to me. Also, she is brutally honest with me about my own shortcomings…sometimes comical, and sometimes not so much….

14. How has your relationship with your spouse changed as you both have parented?

He was a parent when I met him. So it’s not really a fair question. I was attracted to my husband because of the father he was to his son. I did my best to step in and compliment his methods, and became an instant parent the moment I committed to being with my husband.

15. Do you want to have more children?

I did. I will always wish I had more. But when Caitlin was born with multiple midline birth defects, I knew it would be unethical to bring another child into the world. A second special needs child might have stretched my parenting resources to the brink, which would not be fair for anyone. I always wanted to get the last one out of diapers before I tried for another one…..still waiting….

Now it’s your turn. Yes, YOU! ….what were your greatest challenges you’ve faced as a parent?

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Objects in the Rearview Mirror…..

24 Apr

This Blog started out being about Mommy stuff…. then it moved to Social Media Stuff….. and now It’s about to change again.

My youngest daughter (12) needs open heart surgery. This is changing the focus of my life, and consequently this blog. I will be moving all social media related posts to my social media blog :

This blog will move back to its roots and address the challenges of raising kids with special needs. I apologize for the confusion. I may not even post publicly on here for a while, as the posts may prove to personal and painful for my family. I’m hoping that a year from now I can publish many posts on my daughter’s experiences, from diagnosis to prognosis and finally to health. I think writing the posts as they happen and publishing them later will prove to be the best compromise.

In the meantime, anyone know the most economical way to get my family to Disneyland in May? Hoping to make that happen!! (crosses fingers)

The Talk….

20 Sep

Photo: Laurie McAdam. The Modesto Bee 2007

Well, they day is finally here. This morning marked quite a milestone in my little one’s life…..the day we started “The Talk….”

You know that dreaded talk that parents cringe to think about? Now mind you, this is my third time with “The Talk…”

First time was with my boy. We had many talks about the birds and the bees….most of them with him turning red and squirming. I used to love to gauge his reaction when I would add the tagline “Now if you have any questions about the mechanics of sex, just tell us, and your father and I would be happy to act them out for you….” <— He actually keeps track of how many therapy sessions I owe him for such outbursts…..he’s up past 300 now.

A few years ago, on his 20th birthday, I gifted him a plethora of great how-to sex books. The newest editions of “The Joy of Sex” the original “Kama Sutra” and a newcomer on the scene (to me) called “She Comes First” about how to please a woman. He was sheepish to accept, but I’m sure the literature has served him well….and I couldn’t be more proud of his reading library!! LOL! Much better to place the book in his hands and walk away then try to hash it all out red-faced all around, I say…..

My middle child is ridiculously smart, and not at ALL wanting to talk about sex. She’ll be 14 this December. She is devastatingly beautiful….she literally takes my breath away, so I’m sure many a middle school boy thinks about her. I continue to bring sex up, hoping one time I’ll catch her more eager, and so far she is sheepish and avoids the subject like the plague. But her father and I are diligent in letting our kids know that good sex from mutual consent, respect, and (ideally) love is the ultimate trifecta to the best orgasm possible.

When she finally started her period this year, Hubs got all sweet and bought her a special gemstone necklace to mark the occasion. It’s got her birthstone and a diamond in the middle….a gorgeous flower pendant….gotta love a man who knows when to give jewelry.

And now it’s time to introduce the subject to my 11-year-old daughter. She is entering middle school, and just because she is special needs doesn’t mean she doesn’t need “The Talk…” In fact, because she is disfranchised, she has already been taken advantage of. She was a 4th grader when another 4th grader made her kiss him at recess. It took every essence of my being not to throttle the kid the next time I saw him in the classroom…..

So, how do you tell your pre-teen  daughter about coming of age? I decided to take the über factual approach, describing the uterus, the fallopian tubes, and the upcoming menses, etc. I was trying to make sure she wouldn’t freak out when the time came…..Now, to be fair, with all of her mid-line birth defects, I’m not even sure she will actually start her menses any time soon, but I felt it important to prepare her.

So, we started the discussion in very broad strokes, and it was hilarious to watch her reaction. I stayed calm and full of factual information, and watched her eyes widen as she took it all in. She was obviously ready for the discussion, because she has brought it up to me several times in just 24 hours. She wants to know exactly where babies come from, how sperm is made, and the ins and outs of the entire process…..kill me now.

Who knows if/when the discussion will end? But, I’d really rather her hear it from me than anyone else.

Facebook for Embryos

2 Aug

 

Facebook announced this week that it was adding a feature to soon-to-be moms to add an unborn baby, with a due date to their family tree. Facebook for the not-yet-born.

This opens up such a can of worms for me. First of all, it is NOT an option for the father, only the expectant mother…what is UP with THAT?

But more importantly, I fear that the overly excited mom-to-be could be setting herself up for disappointment should anything go wrong in the pregnancy. What it, God forbid, a miscarriage occurs, or a child with severe medical problems is born?

I remember vividly the day I was told my baby was born with multiple midline birth defects. The minute I brought her home, I rushed to my “What to Expect When Expecting” book and looked in the back for the reference page for birth defects. It led me to one paragraph…telling me to seek help from a family therapist….not exactly what I was hoping to read :O

So, I put myself in those shoes again and imagine if I had announced to 3,000 of my closest friends on FB that I was expecting, only to have to delete the listing (sending a FB update announcement to all of my friends) if something were to go wrong?

I’ve seen ultrasound snapshots as profile pics, and I think that is great. But seriously….let’s not count our eggs before they’ve hatched…not meant as a pro-life/choice debate, but seriously!

I have had friends tell me in confidence that they had deleted certain friends because they talked incessantly about their infants ad naseum…this takes it to a whole new level.

What’s next? When a woman’s cycle is she going to be able to update her status to “might be expecting” with a drop down list of possible fathers to tag?

Time for a 2nd act

8 Apr

So, I’ve spent the bulk of the last 2 weeks on the offensive for my daughter….researching/interviewing/praying for guidance in how to structure her middle school years as a special needs child. It is a daunting task, and one I’m just learning to navigate.

I left my ego by the wayside long ago when it came to my little one. I’ve tried to search for the best alternative therapies and to mix it into the public school model. And, while not defeated, I am certainly humbled by the idea that perhaps I need to take a step back and look at my girl with more objective eyes.

As a toddler, it was no big deal that she couldn’t ride a bike…the fact that she was behind developmentally in kindergarten really didn’t seem that big a deal when kids couldn’t write their own names or color between the lines. I bought into a false sense of cautious optimism, because I knew her determination would carry her far. And it has. She remains in the top 3 percentile for kids with her brain anomaly. I have to hold on to that fact as I push forward to a new reality.

It is quite possible that my little angel will never go to college. Or drive a car. Or navigate a map without divine intervention. She may never progress beyond the “Would you like fries with that?” level of employment…that is not pessimism, it’s a realistic view. I feel my focus shifting towards giving her practical knowledge that she can use in everyday life, instead of working towards age appropriate educational goals.

Add into it the fact that I now must help her deal with the inevitable mean spirit that seems to prevail in the middle school world, where awkward tweens lash out in mean rants that spew out from deep seated insecurities…

And I will, like so many parents like me, wake up in the middle of the night in a dead panic, wondering if there is anything else I can be doing to help my child.

But in the clear-eyed mornings, I remind myself to count my blessings. Know it could be MUCH worse, and be grateful that my daughter is here to teach me patience, exceptance, and determination every day……

On second Thought

22 Mar

The more I think about it, the more I’m thinking that my daughter should NOT take the Wechsler test per the school’s recommendations…. I fear that the test giver may be biased based on their desire to see her end up in an Alternative Learning Center setting versus mainstreaming her into the classroom.

I’ve been doing a fair amount of research, and I walk away buoyed by the knowledge that I NEVER have to sign off on an educational plan….it is up to the school to give my daughter the tools she needs to succeed in a regular classroom setting. This is a comforting thought, because I truly believe that she deserves a chance to perform, albeit below average, in a classroom with her peers….I would rather see her claw to the top of the bottom 5th percentile than give up altogether and have her be a ROCKSTAR in a full time special needs classroom.

I’m giving serious thought to hiring someone to administer the test privately, just to see if the outcome is different…..