Parenting a spectrum of girls

Posts tagged ‘sensory processing disorder’

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 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.

D-Day +2

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M in a fire truck (with funny Halloween fangs)

Ok I’m exhausted and have to be up at 6am, but I need to write this.  It’s begging to get in writing and time is flying by.

Tuesday was D-day.  As in Drug-day, or M’s first appointment with the psychiatrist, in which she was very much herself.  This means spitting, hissing, growling, rolling around on the floor, knocking over furniture & trying to run away.  The good news is, I really needed the psychiatrist, Dr. H, to see this, and understand that it gets worse.  I loved Dr. H and I guess A did too (she had to come along for the ride), because she kept giving him lacing cards to play with and answering the questions he was asking M.  (It also turned out well to have her along as she provided a stark contrast to M and proof that it is not poor parenting!  Lol)

Dr. H asked a lot of great questions and listened really well.  M eventually answered a few short questions, then shut down and became absorbed in her lacing cards.  I kind of felt like I got to tell her whole story to a professional for the first time…the Neuropsych she saw didn’t even  seem to listen much. 

So in the end the Dr. Prescribed a very low (starting with the lowest possible) dose of an anti-psychotic medication that has shown successful in treating symptoms of autism like aggression, anxiety and sensory issues.  I had anticipated this answer, but for some reason as soon as he said it my heart sank and my palms became sweaty.  I was really going to put my little 5 year old daughter on a serious medication.  I was scared of her being over-medicated and zombie-like.  I was scared she would be lethargic, sluggish, not herself.  But I filled the script, reminding myself why I made this tortuously difficult decision to medicate my child.  Her quality of life has been diminished (she admitted to me in a very rare totally with it moment that she is worried or angry ALL THE TIME), and she was a danger to herself and her sisters.  She also very recently started displaying self-injurious behaviors.

Tuesday night I gave my little one a pill crushed and mixed in applesauce. 
Disclaimer:  she knew she was taking the medication and what it was for.  While she hated being at the doctor’s office, she knew she would probably start taking medication and what it would do, and was perfectly ok with that.
Dr. H said within a week (2 at the very most) she would be much happier and less anxious, would stop her aggressive, angry behaviors and actually hug me and tell me she loves me!  I thought that was a bit much to promise, but ok.  He also told me I would be able to talk to her about her actions and she would be able to understand me, and that was my hope.

Wednesday morning and afternoon M would start to have a meltdown as usual, I would say something reasonable to her, and she would stop and carry on like everything was fine.  Wednesday afternoon, on the way home from school, I had a CONVERSATION with M!  A full conversation…about SCHOOL!  (Before I could not ask her about her day without her throwing shoes at my head and trying to get out of the car.)  She answered all of my questions sweetly and thoughtfully, with detail!  Before things she said didn’t add up and she was very fuzzy on details when she even made any effort to talk.

Today, Thursday…no meltdowns until dinner, which was very late…past bedtime actually.  We had a full, busy day and she was hungry & tired…any kid might meltdown in that situation.  And as far as her meltdowns recently, it was very mild.  She didn’t talk as much, but didn’t get angry either and was still more willing and clear than so far all year.

It’s only been a couple days, and of course there are still struggles.  I had to walk M into class today and talk to her teacher since M would not speak…and she cried when I left (but she stayed in her seat, usually when I have to walk her in she runs out the door or clings to me).  She still gets upset when kids approach her in the morning waiting outside the school.  But she is already ever so much better!  I’m already feeling like this is a miracle drug that is lifting a fog and bringing her out of the world of Autism and into my world.

But amidst this great relief there is a heaviness and a lot of questions.  Am I changing or denying her “who she is”?  Am I telling her I don’t love her or she’s not good enough without the medication, that I want her to be different or would change her?  Does she WANT to be different, to be in my world, or does she prefer the Autism world she retreats into?  Do I have the right to pull her into my world?  I would ask her these questions and get her permission if I could, but she could never answer them, at least not the way she has been.  And is it fair for her little sister to have to worry for her safety and worry about her big sister running away or getting hurt, or for me to have to constantly scan the environment for things M might destroy or use to hurt herself or others?  I’m not sure there are any answers, but it goes to prove there is no easy answer when it comes to the decision whether or not to medicate your child.

Self Soothing (Why I’m thankful for stims & obsessions)

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M happily listening to her new headphones (Taylor Swift of course!)

One of the most important milestones to a parent of an infant is when they start sleeping through the night.  Bleary eyed parents compare notes…when does the child sleep?  How long?  Where?  Paci, swaddler, thumb sucking, night feedings?
My oldest slept through the night at 10 months, after I did the 3 night cry-it-out method, which worked fabulously.  My youngest slept through the night some time after she turned 2, when I weaned her.  M, however, was over 4 years old the first time she slept through the night (with the help of a weighted blanket).  Even then it was very sporadic until over 4 1/2…we usually find her sleeping with pillows piled on top of her.

So, what does sleeping through the night have to do with stimming?

A baby is able to sleep through the night after they learn to self-soothe.  Many times this is through the use of a pacifier or thumb sucking, sometimes a swaddler or soft music helps them lull themselves back to sleep.  Eventually they learn to put themselves back to sleep all on their own.

A stim is a repetitive action or behavior that helps a person with Autism calm or soothe themself.  Some types of stimming that are familiar to many people are hand flapping and spinning.  M has a number of different stims that she uses to soothe herself and tune out the outside world when she is overstimulated.
M hisses or repeats words or phrases over & over. Sometimes she spins.  She chews on her hair or her clothes (though we have many different theraputic chewers for her, she usually prefers her hair & clothes).  Sometimes she jumps up & down, sometimes she growls or makes other noises.

Aspergian obsessions are also like stims, in a way.  They are a way for them to retreat into their own neat, controlled world where they feel more comfortable.  M is obsessed with Taylor Swift (until recently it was The Beatles), firefighters/fire trucks, John Deere tractors and patterns.  Right now her biggest obsession is A/B patterns.  Tonight she lulled herself to sleep muttering about A/B patterns.  If she can find a pattern in something it makes sense to her and is less scary.

There are a lot of people who talk about how to get your child to stop stimming, how to bring them out of their obsessions.  I believe most of those people are not actually a part of the Autism community…while there are many views (pretty much all valid), most I know don’t find it important to stop stimming and obsessions. Me, I’m thankful for M’s stims and obsessions.  Without them she would have no way to soothe and calm herself, and I can not imagine how much harder life would be for her, much less how much worse the meltdowns would be, without them.

There are times I know are really hard on M (especially transition times like home to school or school to home), I make sure to have Taylor Swift playing and my Nook tablet ready for her to play Mah Jong (one of her favorite pattern games).  This makes it so much easier on all of us!  I try to encourage her to chew on her chewy bracelet or necklace but if she really wants to chew on her hair I don’t stop her.  If she’s hissing I leave her alone because I know she is really overwhelmed and will stop and come to me when she is ready to face the world again.  If she’s repeating words & spinning in the store I let her…shopping = sensory overload on many levels, I’m just glad she’s able to be there.

So next time you see a child or adult displaying repetitive behaviors like noise making, shirt chewing or hand flapping, understand that they are able to get through their experience because of these behaviors.  They are not weird, stupid or disobedient for having these behaviors, they are coping and bravely trying to make it through an overwhelming world.  While M’s stims aren’t always noticeable and she is still young, I plan to be the parent that never tells their child to stop stimming, or to withhold items of obsession.  She is amazing, wonderful and beautiful the way she is and I am proud of how hard she keeps trying.

When In Rome…

When in Rome, Do as the Romans. 

Except when you have Autism, you’re not in Rome, you’re on one of Saturn’s moons.  And there are no Romans, they are beings that don’t communicate like you at all.  They are loud and unpredictable and insist that you follow their customs and are bewildered and sometimes angry when you don’t understand them or communicate back to them in their own strange and difficult to learn language.

“They” say that something like 80% of human communication is non verbal.  Ever participate in a team building exercise where you are put in a group and asked to build something like a house of cards or tall structure with play-doh and straws WITHOUT SPEAKING to each other?  Since I’m in school right now (for Early Childhood Education), I have done a lot of these recently in different classes.  Typically those with Autism have an extremely difficult time understanding non verbal communication, no matter what end of the spectrum they are on.  If it’s difficult to communicate, missing the 20% of verbal communication, imagine how devastating it is to be missing or struggling with the 80% of non verbal?

I really am going somewhere with this.  It started out being a post about restaurant visits.  But this weekend it really was bigger than that, and it ended up as a post about so much more.

A couple weeks ago we took M to a restaurant of her choice for her birthday.  It was a mess.  It was busy and she was overwhelmed before we sat at the table, then it turned into her screaming that everyone at the restaurant were a bunch of “stupid idiots” (her favorite phrase when she is upset…thanks Home Alone for the word idiot).

Friday night my husband’s mom took us to dinner at a restaurant we all enjoy.  It had been a pretty good day so I thought it might go pretty well.  But, well…the table…
See, it was round.
On the opposite side of the resturant than we usually sit.
I guess I am glad she only said “stupid idiots” a couple times, but she had an extremely hard time sitting in her seat.  She had some episodes of screaming and echolallia.  Tried to run away twice…I had to take her out to walk around the building several times, and I almost took her home but blueberry bread saved the day.  It was a rough outing.  Restaurants almost always are, I’m not sure why we still try from time to time.

Yesterday was rough, too.  She panicked as soon as we walked into the Farmer’s Market and was yelling, spinning, pinching and rubbing her fingers in her mouth.  She was impatient and angry.  I was going to go to a kids’ clothing sale but turned around as soon as I saw they had a line.  We went to a music festival (it was a real struggle to get her there including her screaming at everyone for not being totally silent the whole way there) and refused to listen to music.

So how does this fit?

M (and others like her) wake up every morning on one of Saturn’s moons.  We as society expect them to acclimate to our language and customs and start acting accordingly.  After all, they look like us so it shouldn’t be hard for them to learn our language, right?  Don’t get me wrong, everyone we encountered was kind, and I didn’t feel embarrassed  about her behavior… I think everyone involved handled it well, actually.  But it’s hard at times, even for we parents that live it every day, to understand why they can’t just figure it out, calm down and enjoy themselves or at least control themselves a little like everyone else.  It’s important to remember (and especially for us parents to remind themselves every day) that while we could adjust pretty quickly in Rome, we have a small language and culture barrier compared to all an autistic child has to learn about us strange, unpredictable neuro-typical people.

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