Parenting a spectrum of girls

Posts tagged ‘mental-health’

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.

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.

Moving Mountains

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M playing dress up

Why today’s dance class brought tears to my eyes:

One year ago this June…

M is at a children’s occupational therapy clinic that came recommended by a number of people including the county Early On program for children with disabilities.  She is being evaluated for sensory processing problems- we know she is overresponsive- and fine motor skills, etc.  We were told the evaluation would last around an hour or more.  We walk into the evaluation room which is like a big play room.  The therapist has M try to draw some shapes, all she can draw is a circle and she has a very immature grasp.  No surprises.  She asks what M likes to play with.  M wants to ride the bike but can’t do it on her own- also not a surprise.  M won’t even look at the toys.  She doesn’t play with toys at home, either.  Never has.  All of the doctors and team at Early On said that wasn’t anything to be concerned about but it seemed wrong to me.  I told the therapist M likes cars, and she gives M some toy cars.  M won’t play.  She tells M to drive the cars around.  M gets mad, starts crying and throws the cars.  We weren’t in the evaluation for 15 minutes.  I will never forget phrases like “severe dyspraxia” “inability to interact with toys or pretend play” “unable to even participate in testing” and “intensive occupational therapy for at least 6 months”.

And it was true.  M had a hard time climbing stairs, couldn’t dress herself or ride a bike after she turned 4.  She had never played with toys or used any imagination at all.  I was worried, but this confirmation that something was seriously wrong shocked me.  People talk about mourning when their child receives their diagnosis…I was actually relieved when I got her Aspergers diagnosis this spring, but the severe dyspraxia did have me depressed a little.  Thankfully she responded really well to a year of occupational therapy, and after just 6 months she could dress herself almost fully, ride her bike (not well, but much improved), and actually started occasionally using some imagination & pretend play.  I will never forget the first time she used her imagination. She came into the livingroom from the kitchen crawling and meowing like a cat with a cat tail from the dress up box attached to her pants.  It was so amazing, even though it only lasted a few seconds.  Can you imagine never having seen your 4 year old PLAY???  So sure she can’t hold a pencil correctly or use her hands for very long (her fine motor skills tested in the 2nd percentile at her neuropsych eval), but she can (sometimes) play!  And ride a bike, and not fall off chairs & run into walls like she used to!  And then today…

M was at dance class.  She would not participate.  She sat on the floor stimming, fluttering her hands by her face and chewing on them, a vacant stare on her face.  The wonderful teachers kept gently coaxing her but she didn’t want to join.  Finally, maybe because they were doing some acro, which she loves, she decided to join the group about half way through the class.  It was her turn to do somersaults, which they were just learning to do with teachers’ help.  Not M!  I wish I could have taped what happened next.

M ran up to the mats and flipped into a somersault with no hands and proceeded to jump up & right into another no handed somersault 3 or 4 times until she came to the end of the mat!  It was amazing!  This little girl who a year ago didn’t have the motor planning skills to even dress herself or “drive” around a toy car can do handless somersaults, way beyond what other 5 year olds can do.  She also handled the backward somersaults & cartwheels beautifully.  Other parents were saying things like “wow, look at that little blond girl!” Instead of “aw, look at that poor little shy girl by herself”.  At the end of class one girl said goodbye to her and she even said “bye” back!  She didn’t look at her, but she said bye.  That’s an improvement for her.

I am so proud of my girl.  Of how hard she has worked to move an inch where other kids naturally mastered some of these tasks long ago.  Sometimes it seems like we haven’t made any progress, like when she is threatening to kill me for the 12th time in a day.  Lately her behavior has been worse and I have been fighting to get her to take her Omega 3 supplements, which help.  So today I really needed to see that.  To remember how far she has come.  How far we have come, because I have been researching and pushing for answers, therapies and help since I first became concerned when, by 6 months old, she had never once laughed.  It is a long journey but she is doing it.  In a pretty large dance class filled with her neuro-typical peers, this little aspie is rockin’ the acro.  That takes a lot of motor planning.  I am tearing up just thinking about it.

My girl is moving mountains.  She will be ok. 

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.

One of those days

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The end of a long, hard day

I totally had a better, more organized and educational post ready to write today.  It was all about why I am thankful for M’s stims and obsessions.  But that was at about 7:30am and the day definitely went down hill after that, so I don’t have the concentration to write that post right now.  So what you’re getting is the jumble of a confused mama after a rough day and strange week.

Monday we dropped K off at school to head to 6th grade camp for the week.  I was prepared for this to be a rough week because of that.  M had a very rough drop off Monday because of that.  But once she calmed down she had a good report from school.  At home…
Wow.

It was such an amazing day.  We haven’t had a day that good since at LEAST April.  A couple very short minor outbursts about school but no meltdowns, no name calling or aggression.  It was so peaceful.  Like life without Aspergers.  She and her little sister colored pictures, helped me make dinner and were wonderful for the babysitter after I left for school.  I haven’t felt that light and stress free in a long time.

The rest of the week had been, well, not Monday.  I finally ended up telling that mom at school that M has Aspergers, because I could tell she’d had it with M growling and hissing at her daughter.  She seems much more understanding. 

Then came today.  Again at drop off she was hissing and growling at everyone waiting for the school to open.  Yesterday she chilled out by listening to Taylor Swift (her latest obsession) through her comfy new headphones until the doors opened.  Today she would not do that.  I did get her to walk to the classroom on her own, though.

M initially had problems getting in trouble especially at rest time, until the new aide suggested she be allowed to use her fidgets during that time and we took in her weighted blanket, then she was fine.

Today at pick up she said she had a good day.  Turns out she was getting in trouble again at rest, worse than before.  I also got a long note from the teacher that pretty much boils down to the fact that recess has been a mess for M all year.  She spends most of the time crying and will not play with the other kids.  M does have social and imaginative play delays.  She can parallel play and sometimes play with one other person if she can script.  She can not play or socialize with groups of 2 or more kids.  When I ask M about her day none of this comes up.  And she tells me bizarre things that I know are not true.  I obviously can’t rely on her for information about her day.

And then the day got worse.  She wouldn’t leave daycare later when I finished work, it took half an hour to catch her & carry her kicking and spitting to the car.  She kept getting out of her seat belt and crawling around the car on the way home.  When we got home she hit her sister twice, the cat once, and threw her sister’s oranges on the floor then ate them off the floor. 
But oh no, that’s not the worst.
At all.
She grabbed a pair of scissors when we walked in the door.  I’m not sure what she was going to do with them but I know it wasn’t good.  I chased her to her top bunk bed and wrestled them away from her.  Then spent 15 minutes keeping her from jumping off the top bunk.
And then she had counseling, where among other things she hit & kicked her counselor.
Thankfully the counselor now agrees she needs medication.
Good thing we have an appointment in a week and a half.

We talked about balancing understanding she has special needs and can’t control herself with having expectations, not letting her terrorize us and teaching her to control herself.

I feel like I don’t know what I’m doing.
So I feel like a failure as a parent
And like I’ve failed at special education before I’ve begun.
If I can’t control my own kid, how can I help others?

I’m sure it’s just the bad day talking.  I took away her ability to watch a Taylor Swift DVD tonight.  When she realized she wasn’t getting to get her way no matter what she went in the basement with her blanket and body pillow, curled up in the old glider rocker and fell asleep.  Our sweet kitty curled up on her.  Now she is in bed but keeps babbling in her sleep.  My husband said all he could make out was “Taylor Swift”.

Tomorrow will be better!  Parenting a child on the Autism Spectrum is certainly the hardest thing I’ve ever done.  But I love her and am so proud of her.  And I won’t stop working to help her be happy and able to function successfully in society.

In the mean time, I keep praying for more days like Monday!

Defining “Need to Know”

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M at her first soccer game of the Fall 2012 season

This post has been rumbling in my head since Saturday, but today something else happened and I decided it had to be written today. (Plus, it’s that or clean the house…which really needs to be cleaned but, you know, I’d way rather write for you guys!)

When it comes to M’s diagnosis, I decided that I would tell people about it on a “need to know” basis.  Teachers & administrators at school know, of course her health team (physical & mental), and friends and family that are with her regularly.  But when it comes to dance teachers, soccer coaches, etc… I decided only to tell them if her behavior or area of delay became an issue.  This isn’t always as easy to define as you would think, or as I assumed.

Dance: last year’s teacher knew, because M had a rough start and refused to attend class if there was a sub, and also because she became a good friend and had some experience to offer advice.  This year her new teacher does not know, at least not yet.

Sunday School:  all of her current teachers know, because transitioning to this class over the summer was very difficult for her and she still often has a hard time.  Last year they did not know, because her behavior was relatively age appropriate, though she did take her sensory bag.

Soccer:  last season’s coach did not know, but honestly he was a jerk and I’m not sure I would have told him.  He did yell at us for being a few minutes late to practice a couple times until I told him she had occupational therapy right before every practice…he kind of left her alone after that.  This season hasn’t gone quite as well and I’m on the fence about telling the coach.

Last Saturday she refused to play at the beginning of the game insisting she didn’t want to play anymore (after I just dropped off the check to pay for the season, of course!)  She was losing control a little because big sister was going to spend the night with a friend that night, so she was anxious about the upcoming separation & routine change.  I could tell he was frustrated with her, and I was too!  After she started playing she did great as always.  She is extremely fast and scored 7 goals that game.  But if a teammate scored a goal, she cried & wanted to quit.  When she was goalie she stopped 8 goals, but 1 got by her…so she cried & ran off the field!  (K kept score of M’s accomplishments for her).  She is just not good at being part of a team…which it would be appropriate to be frustrated about, except the fact that she has Asperger’s.  Not only does she lack social skills and awareness, but she is social/emotionally on the level of a young 2 year old.  A few parents (from the other team) commented about her getting upset in a way that let me know they thought there was something wrong with it.  I just let it slide…it’s still hard not to care what people think but I don’t know them, and they don’t need a label for my child.  But her coach?  We will see.  If she continues to display behavior that is not developmentally appropriate for a neurotypical 5 year old, I may give him a heads up since the way she is responded to can help diffuse or aggravate the situation.

In school, a parent who is a friend and also has a child with special needs knows about M’s diagnosis, but none of the other parents do.  I never even thought about telling them.  This morning a girl from her class ran up to her before drop off and M grunted, growled and hid behind me (which she also did yesterday).  I tried to put it off with a playful “oh, looks like another Monday!” (Though of course I was embarrassed!)  Then I made the mistake of asking M what was wrong.

I hate her!

Oh, great.  The bluntness and lack of desire to socialize of her Asperger’s together with the anxiety of school drop off made for a great mess today.  What I wanted to say was:
“I’m sorry.  M has Aspergers.”
What I really said was:
“She’s having a rough morning.”
The meltdown began and she tried to run away back to the car, twice.  When we got to the school she did let one close friend give her a quick hug (even if she didn’t reciprocate…yay for hugs!)  But anyone else who even looked at her got the evil eye and a growl, and she hid behind me.  She only agreed not to run away because I told her she could go for a walk with the dean when she went to class (which is what she does when she has a meltdown or is too overwhelmed in class).

Do these parents need to know?  I’m not sure.  On one hand I don’t want them thinking my child is a jerk.  She isolates herself enough as it is, I don’t want the parents to treat her coldly, or tell their children to avoid her, or for her to be the one who doesn’t get invited to parties.  (She does not do well with parties, but sometimes it’s just the being invited (or not) that counts.)  On the other hand, if they know she is autistic, will that help things?  Or make them worse?

Deciding what really does make a need to know is not only subjective, it is just down right hard to decide…especially when the subject is something as precious as your child and as looming as a label.
I am open to any thoughts, advice, or stories of similar situations.  Although I have done a lot of studying on Autism and can tell you all about ABA or what to do during a meltdown, it is still pretty new to me and the things that are hard personal decisions that have little to do with facts or figures, like who to tell and how, are still pretty uncharted territory for me.  Surely nothing about having a child with autism, or any special need, is easy.  But, it is certainly worth it!

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