Parenting a spectrum of girls

The blame game

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M & me on her birthday last week

Last week, M turned 6.  It was a wonderful day.  It is our family tradition that on their birthday, the birthday girl gets a day with just them & me to do whatever they want, then meet up with the rest of the family for dinner and presents.  Despite a little anxiety, over all M had a wonderful day.  I can’t believe she is growing up so fast!

She has also been having a difficult summer.  There is less routine in the summer with day trips, vacations, and daycare while I am at work which is also not a set schedule.  She has been begging me to quit work and school and stay home with her and home school her…she is also terrified of going back to school since she has separation anxiety and social anxiety on top of all of the sensory and other issues she struggles with, with her Asperger’s and OCD. 

She has really been regressing in her behavior (becoming more aggressive, tried to run away a couple times, becoming somewhat less verbal, more anxious, and losing eye contact).  I believe we need to increase her medication (she has been on the same dose of Risperdone since late October) but her psychiatrist can’t get her in for another month.  I feel so bad for her when she struggles this much.  I also feel bad for my other daughters, especially A who is only 3 and takes a lot of the brunt of M’s verbal and physical aggression.  (She has never seriously hurt anyone but she does pinch/hit A and me). 

And all the time, but especially when things get tough, I can’t help but worry and look for all of the ways that I must have caused M’s autism.  I mean, that’s what our society wants us to believe.  Everyone points to ways it must have been due to choices the mother made, such as vaccinations, induced labor, diets including dairy and gluten…you name it.  Forget that there is no substantial evidence to support any of this.  I know that they do it to make themselves feel better.  They can think they are a better parent because they make different choices, and can thereby prevent their child from being autistic. We like to think we have moved past the times when we said autism was caused by mother’s not being nurturing enough, but we are still blaming mothers, just in different ways.

But I digress…regardless of the fact that I know all of this, I still look and look and come up with all kinds of ways her suffering with these awful symptoms like anxiety, depression and dyspraxia are, in fact, my fault.  I was very sick throughout the entire pregnancy.  Did I not get enough of a needed nutrient?  Was it the antibiotics I had to be on frequently, or the anti-nausea medication I needed to keep down any nutrients at all?  Was it the decaf coffee that my doctor assured me was perfectly safe?  Was it due to my prenatal and postpartum depression, or the antidepressants I was on when I was still nursing?  So many ways I could have failed her, failed my family.

I want to stress that I do not see autism in itself as an awful thing, but rather the symptoms that cause her so much emotional distress.  I do feel that I have done a lot.  I recognized red flags early on, did a lot of research, consulted specialists, and worked and worked to find an answer, find therapies, find materials and tools and ways I could help her at home.  I just wish there was more I could do, that I could turn back time and change something to make my baby happy, at peace with herself and the world rather than constantly battling with herself and her environment.

Another day

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Teamwork

I felt the need, the call, whatever to write a blog post today, though I am not sure what of the thoughts in my head to single out.  It has been a somewhat challenging week for my little ones, and for me too I suppose.  Things overall are good, but this evening I feel melancholy.  Maybe I’m just tired and need a full night’s sleep.  This morning my alarm woke me in the middle of a vivid dream…don’t you hate that?  It makes you start the day feeling disoriented and like something is left unfinished.

K is going through a rough patch, adolescence or something more I am not sure.  She hasn’t had a bad attitude or anything like that, but I suppose she is feeling a bit melancholy herself.  And she has the ACT coming up very quickly, so I need to focus and make sure she takes all of the practice tests, as well as a full run through the weekend before. 

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My pink haired girl

The same day K takes the ACT, A has her last soccer game of the season and M has dance class and the big end of the year recital, where I promised to be a room mom. I will be glad when that day is over!

M is having a hard time with school drop offs (some days) and refuses to go to children’s church.  She is ignoring her teacher at school and finding it impossible to sit still at rest time (thankfully no rest time next year in “regular” kindergarten!). She did crack me up today.  She and A were playing and I overheard M say “your mom is dead, remember?  That means you can have whatever you want to drink.”. Oh my…black and white thinking at its hilarious best.  She started to get upset today when I didn’t take the usual route home.  She ended up calming down but that hasn’t been an issue, well, since she started her meds last fall.  It worries me when I see these little regressions.

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M with her finished bowl for Empty Bowls

A has been OK.  Asthma acting up a little, as well as seasonal allergies & her extra-sensitive mosquito bite allergy.  Here in Michigan the mosquitoes are AWFUL this year.  Yesterday she got some bites and she swells badly.  One on her foot swelled so bad we can hardly get any shoe on her foot and it is painful to touch.  Poor baby :(

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Baby bear putting flowers on my grandparents' grave

Yesterday we put flowers on my maternal grandparents’ graves.  This is something we do every year at the same time, to remember them and show our love and respect.  We also do it at this time because it is a tangible but indirect (i.e. less painful) way to remember E, our 2nd child.  We do it on the day that would been E’s birthday according to due date (also less painful than observing on the day of loss).  E would have been 7 this month.  We did this a day later this year because the day before I was exhausted and not up to going, but it was still nice (though of course M complained it was boring so we didn’t stay long).

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K putting flowers on the graves

And…as if it weren’t eventful enough, the kittens all had conjunctivitis and needed a trip to the vet for some drops.  Fortunately they are 100% better already.  They are out of the crate and wandering around the house.  They are playful, adorable and have their own personalities.  I love them so much and we will miss them when they are old enough for their new homes.  But, 7 cats is really not an option for our family…though we are still trying to convince the hubby to keep one, taking our cat total to 4.  K named them (2 males & 2 females): Doctor, Melody, Amy & Rory.  ;)

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Doctor, the cutest & most easy going kitten ever!

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Sweet Amy fell asleep on a pillow

We will get to rejuvenate this weekend with a soccer game, a cookout with friends and planting our garden.  Have a great Memorial Day weekend!

Countdown

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M & A dancing, posing, being silly

I can’t wait for the school year to be over!  I don’t think I have ever said that before.  While I am not a mom to look forward to my kids going off to school in the fall or dread them being home for the summer (on the contrary, I love the extra time with them, not to mention sleeping past 6am some days), K has always loved school so we didn’t count down the days.  Until this year.

M is really struggling.  I am pretty sure it is because she knows the end of the school year is coming up, and for a child who needs routine like air, that causes a lot of anxiety.  First of all, the routine changes a lot at the end of the year.  There is field day, a field trip, a day to visit her classroom for next year and a lot of other “specials” that just upset her.  Then there is knowing that school will be over which brings a ton of uncertainty and change.  She won’t see her teacher or para pro, and she loves them very much.  She won’t see the kids in her class, and a couple are actually kinda friends now.   She will have to go to work (daycare) with me, and the schedule and teachers are variable and it lacks the routine of a school day.  (Actually right now I have a very real fear that she will run away from daycare this summer…I am taking the rest of the week after her last day of school off to give her time to rest and adjust.). Then it starts all over in the fall with a new teacher, new aide, new classmates.

So right now every morning I have to dress her and drag her out the door and into the school, while the whole time she cries and threatens and melts down about not wanting to go to school.  She is not eating well anymore (she only wants junk food & is usually a great eater) and fights me on every little thing, asking me why I am so mean and why no one loves her or likes her.  She also has a long-term sub in computers which has really upset her (her teacher had a baby).  She used to like computers only, then computers & art, now just art.  She hates gym & especially music (sensory overload, anyone?)

I am ready to stop the daily fight to go to school.  Of course, getting her to stay with her group at daycare when I am right across the hall (I work with the infants & toddlers) will be even more difficult.  School has been good for her…I am glad I let her psychologist talk me out of my desire to home school (I.e. shelter) her…I didn’t want her to have to deal with all of the stress of a traditional school…but she has actually made a couple of friends (though not under her terms because she says you are only friends if you never disagree, which is why she only has one friend) and grown so much, learning to read, ride a bike & tie shoes all in the last month or so, as well as grow in so many other areas.

She seems to have found a new interest that helps calm her, though.  True to herself, like most of her obsessions this one is a song.  Last time it was Taylor Swift’s “Santa Baby” (in June!) Which grew to everything Taylor Swift.  Before that it was the Beatles, particularly the “Abbey Road” album.  This time, however, I am less pleased with her choice.  I really don’t want to hear it over & over because every time I hear it it takes forever to get it out of my head…and it isn’t even that good.  I provided a link so you can see for yourself, but don’t say I didn’t warn you.  It sure better help her calm down, or I’m going to pretend I can’t find it anymore!

The worst obsession yet…

Musings on Motherhood

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Me & my wonderful family

Since today is Mother’s Day, I’ve been thinking a lot about what being a mom means to me.  And being me, I like to write things down, it helps me organize and clear my mind.  These are my musings on motherhood.

Being a mom means that I have been blessed and trusted with three amazing daughters to care for and raise.  I get to watch them grow and guide them.  I get to kiss their boo boos and help them up and encourage them to try again.  I get to experience their pains and their achievements.  I also have the responsibility of raising them to be the best they can be, to be happy, to be themselves, to leave the world better than they found it.

Being a mom means that, for reasons I will never know on Earth, my second child was born much too early, into the arms of Jesus.  I miss him every day but I am comforted to know that one day, when my work on Earth is complete, I will finally get to kiss his face and dance with him in my arms.

Being a mom means that no matter what, I must press on and keep going, because there are little ones who need me.  This is actually a positive thing.  Most days are very good, but some days are very hard…but I am able to keep going through everything and get out of bed every day because I have children who need me, and I would do anything for them.

Being a mom means that I have experienced the miracle of a child growing inside of me, of giving birth, of nursing, of feeling and watching my child breathe, their heart beat, their little hand curl around my finger.  As a parent I can’t imagine not believing in God, or not valuing every single life.  Every part of every life is an absolute miracle.  Don’t waste it, and don’t forget to see the miracle in every other human being.  God gave life to us ALL.  Choose to see the miracle.

Being a mom means that my children are growing.  The hardest part for me is letting go.  My baby will be in K-readiness in the fall.  My oldest will be going away to college in 6 years (or less).  I am not ready.  I will never be ready.  My heart is walking around outside my body, and one day it will fly away from me, and it will hurt, a lot…but that is a mother’s job.  It is the hardest and most amazing job to have.

Being a mom has always been wonderful but has not always been easy.  I was a single mom for over 4 years.  I have a daughter with autism.  I have had to leave my precious tiny babies with other caregivers to go back to work to put food on the table and a roof over our heads.  But I have also watched them sleep, been hugged countless times, watched them achieve the impossible, been a part of every day of their lives and been told I am the best mom ever.

Today my miracles gave me the gifts they had made for me at school…from A a plant in a pot she made and “mom” candle holders she made.  From M a clay heart necklace she made and a card she made and wrote all by herself.  From K a coupon book and a card that made me cry.  In this card she said some amazingly wonderful things including that she hopes if she ever has kids that she is as good a mom as I am to her and her sisters.  Isn’t that what every mother really wants to be?  Someone for her children to look up to and aspire to be like?   As much as I feel like I am doing it all wrong, I must be doing something right.

Being a mom, above all, means that I am blessed. 

Word…

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Our cat Recycle

What a week!  I’d say I’m glad it’s Friday, but my husband is working Saturdays and we have a busy weekend.  Don’t get me wrong, it hasn’t been all awful, there have been plenty of good things this week such as K’s conferences, being able to get her signed up for the last ACT of the school year at the last minute and A’s soccer practice.  It has been very busy though (I haven’t been home any evening this week and had lots of miscellaneous things to do like FAFSA…hardly fun) and overall challenging.  M has had a bit of a difficult week as well.  Today she had a few smallish meltdowns and a number of tics including constantly clearing her throat and smacking her jaw shut so her teeth clatter together. 

Then there was Wednesday…

M and I were hanging out on my bed.  Recycle (our male cat pictured above…his name is a long story that starts with him being found in a dumpster and ends with us adopting him) did something that M didn’t appreciate, I don’t even remember what it was.  M responded with “F*ing cat” (using the ACTUAL WORD which I could never in my life bring myself to say). 

I said “you can’t call him that!” (Shocked, of course, since we don’t say that word, or any cursing)

“Yes I can.  F*ing cat.” (Matter-of-factly)
“M, that is a very bad word and we don’t say that word.  You can’t say that word, OK?” (Panicking a little bit)
“Yes I can say it Mom, it’s easy.  F*ing, see, I can say it, it’s not hard.”

Now if we were talking about a neurotypical child I am sure they would be in trouble for being sassy.  But M is incapable of sarcasm and was completely serious.  She did not understand what the problem was and takes things very literally, so when I told her she couldn’t say it she thought I meant she was literally incapable of saying it.  I let her go for a little while.

Later that evening before dinner I found M and told her that is a very bad word and she is not allowed to ever say it.  When I asked if she understood she said “yes, Mommy”.

Some background:  I know she heard this word at least twice at the beginning of the year at school from 2 different boys with special needs along the same lines as M.  She had told me about it and I purposely didn’t give it much attention except to calmly remind her that is not a word we use because it is naughty.  I never heard anything about it again until a couple weeks ago when she called A an f*ing idiot, at which point she lost her “Friday treat”.  Every week each girl has to complete a certain goal and display good behavior, and on Friday they get to choose a small treat like chips or lip gloss.  I thought that was the end of it. 

Tonight I took M & A to get their Friday treats.  K did not earn hers this week and M was really on the edge due to using that word, and hurting me during a meltdown yesterday.  But she was pretty good today so I took her to get the fruit roll ups with tongue tattoos she wanted.  When we got home A, the last one out of the vehicle, asked M to close the door.  M went back to close it but said “why can’t you close the f*ing door yourself?”

URGH!  REALLY?!?

So I took her bag with her treat that she was SO CLOSE to having and told her that I could not let her have it tonight.

She begged.
She cried.
She said she understands why she can’t use the word, now.
I really, really wanted to give it to her.
She was SO CLOSE.

But I am a mom, and try to be a good mom, and being a good mom is not always fun.  It really did hurt me to not let her have her treat.  But I had told her one more incident and she couldn’t have it, and I had to stick to my word.  And I have to help her learn to control her compulsions.

This awful mix of ASD and OCD.  We worked and worked to get her not to say “I’m going to kill you” (oh, which she also said today) to help keep her safe and from getting expelled from school.  She has certain obsession words.  When she is anxious her primitive fight-or-flight brain gives her an overwhelming compulsion to say that word/phrase, and when she says it she feels better.  We know we can’t take away the compulsion so we have tried to change the obsession.  Apparently nothing we have tried has been strong enough to hold, so she has resulted in this very strong word as a replacement.  The problem is, aside from being wildly inappropriate, it will also probably get her suspended if she says it.  And she does not have an IEP to protect her, either (long story there).

I have had enough drama to last the rest of the school year, at least, but I am sure it is not over.  Hopefully we can now find a good replacement for her new word, before summer break when she will be extra stressed by the much less structured daycare routine and much more likely to be unable to control herself in public as well as at home.

I think all I need for Mother’s Day, is to never hear that word from my child’s mouth again!

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My sweet M enjoying a weekend cookout

We “neurotypicals” make life so stinkin’ difficult. Life is so full of social norms, we don’t usually think of most of them and could never list them all.  Of course, that isn’t how most people on the spectrum live.  In fact, that is a big part of the diagnosis criteria, the social difficulties.  But really, why do we say there is something “wrong” with someone who does not understand or observe all of the inane little rules we make for ourselves?

Personally, I hate small talk.  I never know what to say and think I sound…well, lame.  I am happy to talk (to an individual or small group) on any topic I understand well, but I don’t want to stand around trying to come up with a question about a family I’ve never met or the weather.  I think a lot of that stems from my anxiety, since on a related note I also despise talking on the phone.  E-mail and text messaging were made for people like me.  I have a mini anxiety attack just calling to make a doctor’s appointment or order takeout (which is why I always make my husband order takeout, unless it is for Mexican then he makes me because I speak and understand some Spanish and can understand accents well).  Although it may throw me back for a second when I experience the openness of conversation with an autistic person (due to the directness and lack of “filter”) I really find it refreshing and liberating.

Today M was telling me that now that she has learned to tie her shoes she thinks she is ready to live on her own.  Not that she wants to be away from me, she clarified, but she thinks she will soon be ready and she likes to be alone.  (This is the same kid who often tells me she will never go to college and wants to live at home forever).  My solution is that when she grows up she can live next door.  (I don’t want to think about any of my kids ever leaving me!). To which she replied (very matter-of-factly) “well, if you’re still alive.  You might die before that.  I hope you don’t, but you never know.” I gave the automatic response “of course I will be alive”.  But then, I have to be very direct and honest with M, with her concrete thinking and distaste for anything even seeming like pretend or not real most of the time.  She told me “you don’t KNOW that, you could die any time”.  Hmmm…true. 

It is still kind of funny to me sometimes that she can talk about things like that with no emotion attached.  It is factual, black and white, not emotional.  Which is not to say she doesn’t love me or would be any less grieved than her sisters if I were to pass away, it’s just that we are conditioned to not want to think about or talk about these things, where M needs to be correct and factual, not to be told what we think sounds nice.

It definitely makes me think twice about my interactions.  I really dislike how so few people are capable of handling someone really being true with them.   We automatically get defensive at anything we don’t want to hear and tune out the possibility that the other person is just speaking truth and not attacking us.  And so we are often fake with each other, even people who we are close with probably “nicer” and less “truthful” than we should be.  But so many autistics I know just tell it how it is and take truth from our mouths (true, maybe I won’t be alive but hopefully I will be) rather than our socially acceptable fake speak (of course I will be alive). 

I am still getting used to it, but I like it.  She gets the information she needs and moves on.  So tell me why it is we think the social skills aspect of Autism is so wrong?  I think maybe these people we want to treat, the square pegs to fit into the round holes, are more right than we are.  Maybe we need to fit our round selves into square holes once in a while.  I think Neurodiversity is wonderful and can teach us all more about ourselves and what is really important, social skills or honesty?

Taylor Swift

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My girl with a newly lost tooth

I can’t write about M without writing about Taylor Swift.  Her current obsession is Taylor Swift.  Her first obsession was fire trucks, then she added The Beatles.  She still loves those things, but her current consuming passion is Taylor Swift.

This past summer at daycare an older girl was “teaching” M and a couple other younger girls a dance routine to Taylor Swift’s “Santa Baby”. The obsession started with this one song, which we had to listen to over & over & over. It was one thing that would calm M when she was anxious or upset. K had a couple of her albums and over time she moved from just the one song to anything Taylor Swift. She currently has all of her albums (she got Red from me for Valentines Day, and it is her favorite Album. Fearless is her 2nd favorite). She will sometimes still ask for The Beatles, but other than that she never wants to listen to anything else. She dressed up as Taylor Swift for Halloween. She has the Scholastic autobiography and 2 biography DVDs, the deluxe versions of two of the albums with DVD videos, a tour photo book for Fearless and a T-shirt.

M says Taylor Swift is the best singer in the world ever, and when we talk about how God gives everyone different gifts she says “like he gave Taylor Swift the gift of being the best singer ever”. Last year she got her hair cut short because it bothered her brushing on her back, but now she is letting it grow out again so it will look like Taylor Swift’s. She has Taylor Swift posters on her walls & ceiling around her bed (she has the top bunk in her and A’s room). She wears cowboy boots to look like Taylor Swift and practices singing so she can sing like her one day.

She knows a few girls who are going to a nearby Taylor Swift concert soon. She doesn’t understand why she isn’t going and doesn’t think it’s fair. But I know that no matter how much she loves the music and would love to see Taylor Swift live, she could not handle a concert. So many people, so loud and chaotic…I almost go into sensory overload just thinking about it. I so wish she could go, and maybe one day she will be close enough to being able to handle it that I could take her, but that won’t be any time soon. In the meantime she blares the music through her headphones to help her get to sleep at night, and at least she has a positive role model. I use it as a teaching tool how you can do anything you put your mind to, you just have to work hard, develop your talents and don’t get discouraged.

There are definitely worse obsessions she could have. At least she likes The Beatles and Taylor Swift…A likes to listen to Yo Gabba Gabba! :-P

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Halloween 2012, M (long blond wig of course) dressed as Taylor Swift

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