Parenting a spectrum of girls

Archive for August, 2012

Where did the time go? ( K goes to camp)

My big girl is going to camp.  Not children’s camp, but youth camp.  And I am not ok with that!

I still remember the day I found out I was pregnant with her (scared and excited all at the same time).  I remember the day I brought her home from the hospital, all alone and so afraid I would do everything wrong.  And how I cried so on her first birthday!  (Being exceptional as she is, she was walking and carrying on conversations by that point, so she really was not a baby anymore.)

My husband reminded me the other day that she is a good kid and pretty much always makes good choices.  I am not worried about her (and anyway I’m always here to help her with making choices or to pick up the pieces if she makes a bad one)…I am just not ready for her to grow up!  She is 10…I always thought when your kids were 10 they were still, you know, kids.  Little girls.  But my K, who has always been mature and socially advanced (which is rare when you have a child that is as advanced academically as she is) is crossing the line from girl to young woman much faster than I would like.

If you are friends with me on Facebook, you might have seen my post about youth group Sunday night, when a boy (who my husband estimated to be 13-14) made a point to come fist bump my girl before she left.  And when he told me she blushed and giggled!  She has had no interest in boys yet, but I know it is coming in the next year or so.  And of course they will notice her, she is beautiful!  She’s getting taller, her hair’s getting silky and highlighted from the sun and she’s, you know, getting “curves”.  😦  I’m just hoping her super brainy smarts and perfectionism and love for spewing random facts continuously will keep them too afraid to ask her out.  (If not, her Uncle promised to clean guns on our porch.     :D)

She left at 10am today and I already miss her and wish I could call her!  I am sure she is fine and having so much fun without us, but the house doesn’t feel right when one of them isn’t home.  Her sisters miss her a lot, and poor M, having no concept of time, keeps expecting her to be here when we get home, wake up, etc…  even though we keep telling her we will go get K on Saturday.

I am so blessed, not only to have such an amazing daughter that is brilliant, fun, kind, God-serving, lovely and innocent, but that she still calls me Mommy and hugs and kisses me in front of her friends (that may end some day, but I have a feeling it is just a part of who she is, and our special relationship).  Instead of being hurt or sad or blaming anyone for the fact that she did not have a father figure for the first 4 years of her life, she is proud to tell people that it was just her & me until I married her “Daddy” when she was 4 1/2.  She loves her story, because it makes her feel special that we had so much time just the 2 of us.  (And as much as I love my husband and other kids, we did have a blast just the 2 of us…I loved being a single mom to K as much as I love being a married mom to all 3 of them.)

I guess growing up is inevitable, and maturity will happen when it will.  I just hope the next 7 years slow down exponentially…otherwise I will be seeing my girl off to some big, fancy (expensive) out of state college before I can blink my eyes.  And I can’t imagine my home, my daily life, without her.

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Cedar Point has nothing on my house…

Roller coasters.  Fun, right?

Except, everyone wants to visit Cedar Point, spend a day or two…but no one wants to LIVE there.  Especially if you were blindfolded on all of the rides, which you had to ride all day every day, so you never knew when a death drop or loop-de-loop was going to hit you. 

Mostly I do ok…I am a patient, resilient person and I love my kids so dearly I cherish my time with them, and of course I gain a lot of strength from my. lighthouses and from the Lord…but tonight I am exhausted, weary. It has been an amusement park summer (without the amusement). It turns out turning 5 was one of the worst things to happen to M, with her Aspergers and Anxiety Disorder. We are slowly trying to find a way to get her back to HER “normal”, but even her counselor is very unsure how to do that. In the meantime, we are all walking on egg shells. We now know eating out is not going to happen again for a long time, and shopping is to be kept to a minimum. Company is not well received (though if you don’t mind being called a stupid idiot, you are welcome to visit!) But really, any little thing might set off this inexplicable chaos caused by a mixture of general anxiety, separation anxiety, obsessive/compulsive tendancies, ridgid need for structure and routine and sensory processing difficulties.

For example Monday K and I went to a Zumba class in the evening. M was so distraught she had a meltdown the entire hour plus until we got home. This one included throwing all of our dinner onto the floor, which was a new twist. Wednesday M wanted to be outside when Daddy got home from work and she happened to have run inside to get something when he pulled up. This super intense 45 minute meltdown included running away, trying to bust out the screens in the windows and trying to burn herself on the stove where I was cooking dinner.

Wednesday I got M the razberry she has been begging for. If you don’t know what it is, you get them at Babies R Us. They are essentially a pacifier with bumps on it for little ones that are teething. But hey, it helps! She really responds to oral stimulation for soothing and if that’s what helps I really honestly do not care if my 5 year old runs around with a paci in her mouth. (She has given up chewies before from being picked on but she is in a place right now where she needs it so badly and has retreated far enough into her own world that she doesn’t care.)

Thursday I spent an hour and a half brainstorming with M’s therapist looking for behavior modification techniques. We did come up with a few ideas, but even she, who has a lot of experience with anxious and autistic children, admits M is an exceptionally difficult case. I am a little confused that she admits M needs medication, but does not want us to take her to a psychiatrist yet. She is afraid they will medicate her too heavily. I am calling Monday to get her in, anyway. I know enough about the different options to insist on starting with an SRI and only moving to the “heavy hitters” if necessary (thanks largely to Temple Grandin and her conference I attended in May).

Hopefully the behavioral interventions, medication and just getting used to all of the changes (like starting school, which has her terrified) will help. If I am exhausted of the constant ups and downs out of nowhere, I can’t even imagine how she feels. I imagine it must be a terrible cycle…she’s anxious, loses her social and communication skills, melts down, feels more out of control, more anxious, and on and on. Fortunately sometimes I do still get to see my little girl in there. This morning she played in my bed with A for a long time. This evening she picked out A’s favorite movie to watch together. She even let me drop her off at Sunday school without TOO much difficulty. I am so thankful for the peaceful moments where my baby seems to be in the world with us, rather than in her own world that is full of scary things. Hopefully we can get her off of this perpetual rollercoaster soon.

Lighthouses

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I live in Michigan, pretty close to the lake shore…so lighthouses are a pretty big deal to a lot of people.  While I don’t collect them or go out of my way to see the number of beautiful lighthouses in my state, I do feel a certain fondness and awe of them.

Lighthouses let you know where you are, and remind you where you have been and where you are going.  They keep you from running aground and just the sight of one when you are on the water (especially when it is dark and stormy) brings relief.  You don’t have to ask for a lighthouse, they are just there, right where you need them, when you need them.

Of course Christ is THE lighthouse, but I am blessed to have a number of other beams of hope and comfort in my life.  The first one I think of is A, my youngest.  She is so easy going and loving.  She plays so well with M and actually feels bad for M when she has meltdowns rather than being upset (amazing for a 2 year old!)  She is always giving me hugs and kisses and telling me she loves me SO much, I am her best friend and she wants to be like me when she grows up.  She is funny, smart and sassy but rarely disobedient.  Not only is her love so wonderful, she is also a reminder that M’s problems are not due to bad parenting.  (Note…of course I also dearly love my oldest daughter K, I don’t mention her as a lighthouse because her high level of giftedness bring about their own struggles and special needs.)

I also have my amazing friends.  Much of my life I have not had many close friends, however the past couple of years that has changed.  I think this is largely because where before I did not want to leave my girls to go out, now I am willing to do this once in a while,  the combination of working part time and having days where I really know I will be a better mom and better able to deal with things for the next week if I get away for a couple hours.  I also have met many amazing women who have great kids the same age as mine & many who have children with special needs.  It is so amazing and refreshing to talk with others who REALLY understand!  While there are so many of you I know I can’t list you all, I want to really thank:
Rachel, Kim, Ashli, Petra, Maria, Suzette and Amber.

I have also been blessed with a wonderful husband.  While our relationship is not perfect, he is there for me and maybe most importantly, he is a great dad.  I know a lot of dads have a really hard time parenting Autistic children, not getting annoyed or being too harsh with them and just dealing with all of the chaos.  But Russell has been wonderful with her.  Not only that, he was there primary caregiver for a number of weekends over the past year when I was working a lot of them.

And my church.  It is an amazing place where everyone is so kind and welcoming.  The Sunday school teachers understand M’s difficulties (she usually has a hard time transitioning as drop off) and are great and patient with her (and with me, I have a hard time leaving her when she is clingy).  We love worship at our church, and the amazing messages from our pastor and the awesome guest speakers.  No matter how exhausted I feel when we get there, I always leave feeling refreshed and rejuvenated.  We have also been blessed with options…since I did work so many weekends, I was still able to attend service since they have them on Saturday night in addition to Sunday morning.

Thank you all for being a part of my life and sharing in our story.  Thank you for your friendship, words of encouragement, prayers and support.  Without all of you, and all of my grounding, guiding lighthouses it would be a much more difficult, lonely road…but with you I have the strength to keep treading water and pushing forward.

The Words That Hurt The Most…

“I’m sorry, there’s nothing else I can do for your daughter.”

Although I should have seen it coming, this comment as we were leaving the office of the counselor M and I have been seeing for the past year felt like a stab in the heart.

“I am going to make some calls, talk to some people about her symptoms and get her in to the best specialist I can find as soon as possible.  I promise to call you soon.”

The silver lining, a life line for me to hold on to, a ray of hope that SOMEONE out there can help her.

It was just such a painful evening.

“I think her diagnosis is wrong, she needs to see a doctor who specializes in autistic children.  Her current symptoms and behaviors make me think she is more severe than mild Asperger’s.”

“I don’t know how you’ve done it for 2 months.”

“As much as I know you don’t want to, she needs medication.  Soon.”

“I’m not sure how they’re going to diagnose, because she can’t participate in the tests when she’s like this.”

“In all my experience I’ve never treated a child who talked about death so much.  That really has me worried.”

“I don’t know if she can go to school in the fall…they won’t be equipped to handle this behavior.”

Beyond the words, which I know were
spoken in truth and caring from our wonderful counselor, M’s behavior was as bad as it has ever been.  She tried running away constantly from the time we got there.  She made it to the parking lot, twice.  She constantly screamed at the top of her lungs.  She shouted things like “I hate you” and “you’re stupid” to both of us, but mostly “get me out of here, I want to go home”.  She could not listen to anything anyone was saying to her.  She did this the entire hour & even after we left.

Then, there was the aggession…
Tearing up papers, trying to knock over & throw everything in the office, kicking the windows trying to break them open to get out.
Hitting me, biting me, kicking me, head butting me and choking me.
I did have in in the “safety” basket hold, but I kept letting her go because I couldn’t bear hearing her scream that I was hurting her, even though I knew I wasn’t.  But every time I loosened my grip she would attack me in attempt to get away.  She was a cornered animal.  I was scared and sad and hurt for her.

Eventually on the way home the ipod playing Beatles through her headphones calmed her down.  Somewhat.  For a while.

Hopefully we get our referral to a great neuropsychologist very soon, and can get a good, final diagnosis and get her on medication that will help.  Prayers much appreciated!

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