Parenting a spectrum of girls

Archive for November, 2012

The wrong turn

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Tuesday M and I were leaving the psychiatrist’s office following a brief, positive recheck were he was impressed with her progress and more healthful appearance (ie she gained 3 lbs and wasn’t screaming & knocking over furniture).

As we left the building, which I am not too familiar with yet, we turned the wrong way in the parking lot and ended up at a dead end behind the building.  Just outside the vehicle, off in the grass a very short way, was a large, beautiful doe.

I put the car in park and we both ahhed over the magnificent creature, which just stood there looking at us for the longest time.

I rolled the back window down so M could get a better look.  She stuck her arm out the window and waved.

Hello she said.

She waved, looked, and smiled for a few more minutes, the deer still motionless.  Then I told her we had to go.

Goodbye, deer  she said, waving.

Then we drove the other way, on our way home.

I thought about how grateful I was for turning the wrong way, or we would have missed that beautiful, precious moment.  I intended to head straight home, but God had something better intended for our time.

Autism is kind of like that.  Even for those of us who advocate for our children, who insist they are different, not less.  That they just see the world differently, and that we wish we could be like them.  All of that is true, and I wouldn’t change M or any of my children for anything in the world.  But there are those days, the bad days when the meltdowns are relentless, when I have to be afraid she will hurt herself or someone else…when I think “this is a wrong turn.  My life isn’t supposed to be like this.  My child isn’t supposed to be like this”…and then the beautiful moment when she sees patterns in everything, when she jumps with excitement when she sees a fire truck or singing at the top of her lungs to Taylor Swift…and I remember, she isn’t like other kids because God had something better, more beautiful, intended for our family.

In Her Own Words

I hung up my phone from checking my messages.

“Who was that, Mommy?”

“Oh, just your doctor’s office calling to remind me of your appointment next Tuesday.  You remember the doctor that gave us the medicine you take?”

“Yeah, I remember.  Why do I have to go back?”

“Well, it’s just to talk to us and see you and make sure the medicine is working.”

“Is the medicine working?”

“Yes, it’s working very well.”

“How do you know it is working?”

“Well, because you’re happy now.  You’re not angry or worried all the time.”

“Yeah, the medicine’s working.  I can tell.  Because I can think now.”

“What do you mean?”

“I can think now.  Like, I can think about all kinds of different things, and I can think about what is good and what is bad and choose to do the good thing.  I can think about things I am supposed to do and everything.”

“What about before the medicine?”

“I just couldn’t think about anything before the medicine, I couldn’t think at all.  Now I can think and choose things and everything.”

Wow…not just that she feels that way and can feel the difference, but that she could express that!  I was so completely amazed.  🙂

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Thankfulness…days 7,8,9

Yes, I know, tomorrow is day 9…so you get a preview 😉

I am thankful for my biological family…my parents, my sisters and my grandparents.

Like most people of my generation (end of GenX), I do wish I had that neat little nuclear family, but I think our parents were the divorce generation.  I do have memories of growing up with all my family under one roof, though, since I was a Freshman in High School when my parents finally divorced.  I love those memories…I pick my favorite memories and use them as guidelines for what I want to do/be/provide for my kids.

I have one sister who is 2 years younger than me, and boy we did not get along as kids!  Now, of course, we are very close and even only live about a mile from each other.  I can always count on her to help me out in a pinch, or just to talk about anything.  We don’t get to spend much time together now that we are both working mommies, but we cherish the time we do get together.  One of the most awesome things is that we are almost opposites as far as temperment, what we enjoy and want out of life, we have different politics and different socio-economic statuses.  But what really matters is that we are sisters…we have a special bond that I am so thankful for.

I also have a sister who is 20 years younger than me (and 2 1/2 years older than my oldest daughter).  She is technically my half sister from my mother, but she is my sister.  She is really  more like a niece, and she and K have played together for years.  Today she got to spend the day with my younger daughters and me and we had a blast.

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I have enjoyed getting to watch her grow up…I was even my mom’s birth coach so I was there when she was born!  Again, we have that bond of sisters.

My mom and I are pretty close, and she lives in the same town also.  She has been such a big help to me and my family, and the girls love spending time with her.  She has been absolutely amazing through everything we have been through with M, always willing to learn more about her most recent diagnosis and accepting her readily for who she is.  She is the person in my family I am most similar to, and she is always there to listen, but also understands when I just don’t want to talk.

My dad lives in Tennessee, but I usually get to see him once a year.  I love my dad, he is such a sweet person.  The girls adore him, too.  They call him “silly Grandpa” and talk about him all the time.  My dad has also been there when I need him and always looked out for me and my family.  In a lot of peculiar ways my husband is a lot like my dad…so I guess I picked well.  😉

My maternal grandparents have both passed away years ago, but growing up they were my favorite people on the planet.  They were the most wonderful, caring, amazing people.  Their house was the place I knew I had unconditional love.  Writing about them is actually making me very sad…I miss them so much…they really showed me God’s love and sometimes I long for my Grandma to hug me and make me a gross peanut butter, butter and jelly sandwich.  The love they had for each other was also an amazing, rare thing to witness.  I think Heaven will be just like being a little girl in my Grandma’s lap in her purple arm chair watching Jeopardy.

My paternal grandparents also live in Tennessee, and I see them also about once a year.  They are loving, always quick with a prayer and a kind word.  I feel like I am “home” when I visit them, and it is always so hard to leave.  My Grandma’s cooking is better than any restaurant and I just love to sit and chat with her, or fish with my Grandpa.  They always make sure we have what we need and are very generous, giving people.  They also have a long, wonderful love story, and my husband and I got married on their 53rd wedding anniversary.

I have been blessed with a wonderful family who all love me and are there for me if I need them.  Not everyone can say that, and I am thankful for my family.

Thankfulness- Day 6

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I didn’t want to be cliche, but it’s true…today I am thankful for the right and freedom to vote…especially as a woman.  It is important for us to remember where we came from, to give us clarity moving forward.  Women used to get beaten for trying to vote.  Women were not people, they did not have rights.  We talk now about other cultures and countries and how they are so backward, because women don’t have the right to education, voting, and so on…but we forget that we are not so far past that.  A woman still more often than not makes less than a man for doing the same job.

I also have so many other freedoms I am thankful for…the freedom to have as many children as I choose, or to have them at all (even as recently as the 60s states were performing sterilization on people against their will), the freedom to marry whom I choose (because I happen to be heterosexual…not so long ago people thought allowing interracial marriage was unnatural & would open the doors for all kinds of disruptions in families and the institution of marriage…which didn’t happen), the right to have a job and to go to school…and the right to write this blog and say what I believe.

And what I believe is that we can make a difference in this world not by bullying people, making them feel like lesser than everyone else for their choices and mistakes, or judging, but by loving.  By being a light on the hill, not the strong arm of the law.

I have many friends who do not feel the same way I do…I still respect them and love them, and agree to disagree.  That is what makes our country good…the right to think, say, feel, and vote what you want, and to not have to be at war with each other about it…to have the right to choose to be happy instead of angry, no matter what the outcome.  Even if none of my choices for offices wins, I am happy…because democracy wins, either way.

Thankfulness- Day 5

Today I am thankful for my job.  I am so blessed to get paid (though admittedly not much) to do what I love.  I work at a daycare in a Christian school with infants & toddlers, and I love every minute of it.

Most of my adulthood was spent working in the insurance and finance fields.  The first “real” job I was able to get was at an insurance company, and if you want to increase your salary, well, once you have experience in a field you’re pretty much stuck there.  After my third child was born my wonderful bosses let me work a 4 day week, but I was still commuting at least half an hour each way, making my days with daycare drop off and pick ups a good 11 hours without seeing my girls.  I also grew quite disillusioned with my work.  I then worked for a “higher end” insurance/investment company, and I was tired of trying to care about helping rich people make more money.  I was also unhappy with my work situation where I was suddenly working for 3 people, one of whom was demeaning, dishonest, verbally abusive and really a pretty scary person to work for.

One night I was holding A, who was not quite a year old, rocking her to sleep and not thinking about anything.  I clearly heard God say (in my mind), “you know what you want, you just have to ask for it”.  I knew he meant my work situation, so I prayed for a local part time job with decent pay in a field where I would actually be helping people who really needed it.  Within a month I had an interview for a job working in registration at the emergency department of the hospital less than 10 minutes from my house.  I got the job, and I was ecstatic! I loved my job at the hospital for many reasons…it was challenging and fulfilling and I had amazing coworkers.  After almost a year, though, due to staffing issues I was working far many more hours than I had signed on for, at a very unpredictable, crazy schedule…this was too much for M, my daughter with Asperger’s.  During this time she started talking about wanting to die, and the downward spiral of behavior problems and meltdowns started.  I also longed to work in my field, but did not think I had enough education yet.  (I am attending college part time, slowly but surely working toward a Bachelors, then Masters, in Early Childhood Special Education.)

Through a somewhat funny coincidence I discovered that I could in fact work in a childcare and was invitied to apply, interview, and hang out at a daycare my oldest daughter had attended during preK-3rd grade to see if I thought it would be a good fit.  After the first visit I was hooked…I loved the kids already & felt like I knew this is what I was meant to do, what God made me to do.  I am so glad I found this job, it is a dream come true to work part time (I get to drop my girls off-the older 2 go to 2 different schools, Amelia goes to preK where I work-and pick them up every day), work with amazing kids who I love very almost like my own, and potentially make a real difference in their lives.  I am so thankful for my job, every day!

Thankfulness- Day 4

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Today I am thankful for the team of people who have helped M progress to where she is today.  In this picture, taken yesterday, she had just spontaneously climbed into my lap to cuddle!  This has not happened at all until very recently.  She also used to freak out about having her picture taken…now she likes it!  This morning we stopped at Starbucks on the way to a play date with her best friend.  On the way out a gentleman held the door open for us, and I thanked him.  Then as she passed him, M looked at him and said “thank you”.  That was huge!  Certainly more than I could have expected or asked for.

M absolutely still has struggles.  Sounds bother her a lot and she has recently started flicking her hands in front of her face (a new stim) when she is overwhelmed, especially when A is crying for any reason.  Her drawing and writing are considerably behind what is developmentally appropriate; she still can not even trace shapes.  But thanks to her OT, her dyspraxia is far less severe…she can dress herself for the most part, ride a bike with little help, and actually play with toys and use imagination (though she still prefers sorting to actual playing).  Thanks to her psychologist and psychiatrist we have seen drastic improvements in her behavior and sensory problems, and even to some extent with socialization.  Her daycare teachers & director from birth to 5 provided her a safe place to develop and be loved for who she was.  Her teacher, parapro & dean at her school this year have been amazing with her.  Though we went through 3 parapros in as many weeks, the end result couldn’t have been better, and M is able to stay on “green” (good behavior) almost every day.  Even the Early On program locally, though they did not feel she qualified for services due to her age appropriate language development at age 3, gave us good resources, suggestions, and the social worker and OT came to our home to give us some guidance and materials.

And of course, our amazing friends and family who have been there for us every step of the way.  Especially those friends who know exactly what we are going through and have been a tremendous resource (yes you Rachel, Kim, Amber, Courtney & Suzette).  It really does take a village, and the bigger the special needs the bigger village you need.  We have been blessed with a big, wonderful village that have helped all of us grow together.

Thankfulness- Day 3

For day 3 of Thankful November I am thankful for my husband.

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I don’t mention him much or blog about my marriage for a number of reasons.  First, this is primarily a blog about parenting children with special needs.  Also, it was my decision to blog and make parts of my life public, not his.  I doubt that is something he would ever choose to do, and I respect his privacy.

Ours is not a bring-you-to-happy-tears marriage.  We have had more downs than ups in the 6 1/2 years we have been married, there has been a lot of hurt, a lot of struggling to forgive and choosing to love even when it’s hard to do.  None the less, I am thankful for my husband for many reasons.

We agree (for the most part) on religion and politics, and that sure helps this time of the election cycle!  He gets my sometimes weird sense of humor and tries to give me alone time when I need it.  He loves Kaity (who is not his biological child) and treats her the same as the other girls (who are).  He acknowledges that when it comes to parenting and decisions regarding the girls, I am both knowledgeable and intuitive and trusts me to make the right decisions…and he is a good dad, enjoying spending time with them.  He is a hard worker and has a good work ethic.  He supports me going back to school and working part time to be with the girls more.  He let me get the cats, even though he doesn’t like cats (though I think ours have grown on him).  He still leaves me cards and candy on occasion, especially when I’ve had a bad week (or he’s in the dog house lol).  And most of all, no matter what the reason, divorce is not an option for either of us…I think just agreeing on that, that the option is never even on the table, forces us to get through the very worst of times and move on to making things better.

So dear, I know I don’t say it enough, but thank you for asking me to marry you on the playground almost 7 years ago.  And yes, I am still glad I said yes.

Thankfulness- Day 2

For day 2 of my 30 days of Thanksgiving I chose my furbabies:

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Vienna cat and…

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Honey cat.

I grew up with cats…my parents had show cats that they also bred.  (Siamese cats, at that).  I loved my cats and though we later had dogs, I was never much of a dog person.  I like how cats are independent & are content to curl up on your lap & don’t lick or jump on you.  My husband, on the other hand, claims to be allergic (ie he doesn’t like cats 😉 ) 
As you may know, I have struggled myself with depression and anxiety since childhood.  Eventually we both decided that it would be good for me and good for the girls to get a cat, so last year on K’s birthday, off we went to Companion Cats to find an adult female cat that could tolerate our sometimes loud & chaotic home.  There we found Vienna, a sweet 2 year old lady who liked to play and be cuddled.  Vienna (the girls decided to keep her name from the shelter) is THE perfect cat.  She lets the girls carry her around & treat her like a doll.  She always sleeps with whoever needs her the most, and she is the most laid back, sweet kitty there is.  In her picture, she is sleeping on M’s lap after she curled up on our old glider in the basement following a huge meltdown this summer.

Since that turned out so well…about 6 months later I was able to convince hubby to let me take in a1 year old female feral kitty that a friend was trying to find a home for.  She was pretty aloof for a while, but she is finally running freely throughout the house and cuddling on my lap when I sit on the couch.  The girls decided to name her Honey because of her orangey-and-white coloring.  A isn’t brave enough to pick her up yet (she is learning how to be gentle with her claws…we don’t declaw our cats), and K doesn’t play with the cats as much, so she is pictured with M.

These sweet kitties have truly become part of our family, and I am grateful for how great they have been for me and the girls.  M & A used to be afraid of animals, but they aren’t anymore.  In fact, A is the first one to ask to pet someone’s dog.  And my husband has grown pretty fond of them, too…with no allergy trouble.  🙂

Guilt and Progress

One thing all mothers share, special needs or not…our constant companion waiting behind every decision big or small:
Guilt.
Today was a perfect example.  I have not been feeling well all week, dealing with a virus that is giving me painful, swollen glands, sore throat, headaches, body aches and fatigue.  By the time I left work this afternoon I wasn’t sure I could even stay awake another hour.  So, I decided to take a nap.  M was home from school due to a power outage, so I had her take a nap as well.  A was supposed to take a nap, but I couldn’t drag her away from her baby dolls & didn’t have the energy to try too hard.  But it was a difficult, emotionally painful decision.  The house was a mess after a hectic Halloween, and I felt I should spend the time doing something special with the girls since M was home.  On the other hand, I knew I would be very irritable & even more tired if I chose another option.  And this is how a mother thinks and weighs every scenario in a day.  It turned out fine, after nap we picked up K, ran to the grocery store which was *mostly* a nice experience together & cleaned the house while listening to Christmas  music. (Shhh…don’t tell my husband.  He has a “no Christmas before Thanksgiving” philosophy 😉 )  But I know I will still second and third guess myself next time I try to prioritize, especially if I put myself first.

I also know I am long overdue to update you all, so here goes:

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A: nothing to report, as usual.  She is very happy in preschool.  She did have her 3 year well child, where she was a very big, brave girl and earned her chocolate milk and cheeze-its.  She is in the 87% height & weight (thus why she & M almost share clothes) & the doctor was delighted with her language & cognitive abilities, stating she is right on track for a 4 year old, actually.  (No surprise to me.)

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K:  The mono is still kicking her butt a little, but so far she has only missed half a day of school, though she has to take Ibuprofen throughout the day to dull her awful headaches.  I am praying it is over soon, and that she doesn’t catch any other virus in the meantime.  She is excelling in her gifted program at school, especially science, her passion.  She has a FLL Robotics tournament next weekend, and she is taking the SAT next month to secure a spot in an even more advanced, rigorous program for next year.

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M:  She is still progressing on the meds.  We did end up increasing her dosage a little to twice per day.  She still struggles with changes in routine, some sensory issues and other areas, but overall what a huge improvement!  Everyone who knows her on any level has commented on how different she is.  She is HAPPY.  She smiles and laughs.  She has stopped hissing and growling at other children and plays more, with other children and with her toys.  The biggest thing is, she is more verbal.  Instead of an immediate meltdown she will tell me (in a loud tense voice) “I’m feeling anxious!” So we can remedy it before it escalates. She still stims, but not as often.  She still has her obsessions, but they don’t over shadow everything.  I can listen to something other than Taylor Swift on the radio!!  🙂  She still has not given me that hugging-me-and-telling-me-I-love-you-Mommy moment, but she has given me a couple of kisses & lets me hug her somewhat more often.  Today there was unexpectedly no school, and I got that sick in the pit of my stomach feeling that comes when I know she is going to lose it.  She was fine!  Overall a bit more tense and anxious today, but not terribly.  She was happy to get to wear whatever she wanted today (they have uniforms)!  Her therapist even noted the enormous difference, and said she had never seen anything like it before.  It proved that it was not lenient parenting (she had been pushing for me to be more strict) & she noted how remarkable that one thing in her brain was so far off that this medication could transform her so.  The brain is such a mysterious thing!  She even finally won her BeyBlade…a reward we put in place over 3 months ago for a week of good behavior!

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We had a great Halloween trick or treating for the first time, with Kaity’s best friend.  There was very little anxiety from M.  She was amazing.  So was A, for being only 3!  They won’t eat much candy but it sure was a fun experience!

Thankfulness- Day 1

I am so sorry that I have not posted in so long.  It’s been one of those months where life just happens.  I will have 2 posts tonight…and I plan to post at least once a day this month, with my November Thankful list.

Today is day 1, November 1st, so I chose the thing I am very most thankful for in all the world…
My children.

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Maybe not profound, but they have each changed my life and made it better in so many ways.  My life would not be complete without each of them.  In fact, I am sad and feel the loss when one of them is spending the night with Grandma!  (A trip A has not made yet, M has made a couple times, but K spends the night away from home on occasion.)

K:  My first born and enormous blessing.  My mom said that K saved my life, and maybe it’s true.  Although I was an unwed mother & ended up raising K alone until I met my husband 4 years later, I think she was a specific gift from God.  I was at a rough place in life and did not care about myself…but He knew I would care about my baby, which made me take care of and look out for myself as well.  I loved our time just the 2 of us, and we continue to share a special bond today.

M:  The child we tried and prayed for for so long.  The answer to prayers.  And a child who has taught me about different kinds of beauty and to see the world in different ways.  She has taught me so much, and watching her overcome struggles and working harder to do some things that come so easily to others has made me so proud of her…it has also taught me how to fight for what I believe and to fight to help others, even when others can’t see the problem.  Slowly she is progressing and I am still hoping for the day when she will hug me and say “I love you Mommy”.  That will be the best day of my life.

A:  Another unplanned blessing.  I think God gave me A to show me I was not a bad parent, and as a calm place when times got rough with M.  She is my sweet, loving, easy going child who freely gives hugs, kisses, snuggles & tells me I’m her best friend.  She has been a great companion for M and has helped teach her how to play.  She makes me laugh and is a joy.  She is my only child who doesn’t require special attention for special needs, which cqn be a relief.

My girls are amazing, each one of them in their unique, wonderful way.  I thank God for them every day.

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