Parenting a spectrum of girls

Posts tagged ‘sensory processing disorder’

Countdown

image

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…

Social Skills

image

M and her best friend

When M was younger (2, 3 even 4 years old) she was petrified of other people, even children.  She got along well enough with the other kids at daycare, and had been with almost all of them since they were infants.  But if there were new children in Sunday School, or if a child tried to talk to her or play with her somewhere like the playground or the zoo, she would scream loudly and hide behind me.  I never knew what to say to the child and parent, I always felt so bad that she hurt their feelings, and at the time she did not yet have a diagnosis to explain her behavior.

Adults always wanted to say hello to her and give her little trinkets because she is so pretty (petite blond girls get a lot of attention) but she would run away from them and hide, or cry.  I always graciously accepted the necklace/coin/etc on her behalf and say she was very shy.  Once she was in OT the therapist noticed if some other child was in the same gym she ignored them completely and didn’t even look at them or acknowledge their existence.

At the beginning of school this year, standing outside waiting for the school doors to open she would hiss at the other students, growl at them and hide behind me.  She had no friends, no one played with her and she stood alone by the para pro and cried for me during recess.  After she started the Risperdone in late October she stopped hissing, growling and hiding.  Around the same time we had her first conferences.  Her teacher told me that all of the other children liked M and wanted to be friends with her, but she refused to play with them.  Sometimes she would play with one child but when two were playing together she refused to join them.

Eventually M got better.  Her social skills are still not great, but she does have a few children she enjoys playing with.  Her difficulty reading social skills really feeds into her anxiety, and simple things such as losing a game or being touched can make her very upset.  She does a lot of parallel play but she loves to play games and can sometimes follow other children’s’ leads and play together, especially if it is her best friend, who she got to have a play date with today.  She still prefers to play with the para pro at recess but also will play on her own or play a game with one or two other children.

Also today, M had a “meet you there”, where her class got together (those who wanted to) at the movie theater for a free movie.  She sat next to one girl who she likes because they have a lot of similar difficulties and because this girl’s mother and I have become friends.  They talked some and enjoyed sitting together.  She also called out hello to the other children as they came into the theater.  It was good to see her interact with other children, even if much of it was superficial.

The center where M attended OT does have social skills classes that they recommended for M, but at least for right now we are not going to go that route.  Many children with Asperger’s, especially females, want to make friends but don’t know how.  M does not have the desire (most of the time) to have friends.  She wants people to be nice to her, but other than her best friend she is OK with ignoring people most of the time.  She cries for her best friend when they haven’t seen each other in a while.  Since her social situation does not bother her, we are happy too.  She is very good at using her manners unless she is too anxious to talk.  The rest of it is just who she is and I love her the way she is, I have no desire to “fix” her or change her.  If some day she wants to know how to make friends, read social cues or be able to “appropriately” respond to people in public then we may go the social skills class route.  In the mean time, I am very nappy to have a quiet girl who does not hiss at people anymore.

The triple brownie day

image

M after school, a bit out of it

 

I am kind of at a loss today, very confused and I don’t really know what to do.  When I don’t know what to do (if I have any energy at all), I bake.  I don’t always eat what I bake and I usually don’t eat when I’m stressed, but today I really needed the chocolate so I even ate one of my own treats.  I made… Nutella stuffed oreo brownies.  I know, just reading the words makes you gain a bazillion pounds.  But…easy and YUM!

It was pretty much a normal day, overall happy and the weather was wonderful for a change.  I picked the girls up from school, M is last.  When I picked M up I said “Did you get super green today?”  “Super green.” she replied.  Super green means that she did not have to move her clip for behavior problems at school at all today.  Most days are actually super green for M, as she controls herself pretty well at school and since they are young 5s expectations are not extremely high (although I have suspected her teachers of being extra easy on her, which I hope is not the case…maybe I am just strict).  We went to the playground since it was a beautiful day and there is a quiet, seldom used playground right on our way home.  When we got there I opened M’s folder.  I was looking for information on the Science Fair on Friday, which M has decided she does not want to do, after already having signed up with a great idea, and carried it through much of the way already.

I was surprised to find that, while she did in fact have green colored in for AM and PM from her teacher, there was also a note saying they had to talk to her about talking rather than hitting when she is frustrated with her friends, and not lying.  Apparently, from what she told me and what I read from the teacher, another student was doing something they were not supposed to do…a little thing that no one really cares about, like being silly with the materials at a center.  M asked the child to stop and they did not.  She yelled at them to stop and they did not.  She hit them.  They told the teacher she hit them and she denied it, then because she can not lie she admitted what she did and apologized.

She hit another student.  This is a nightmare for me.  This is what I was afraid of at the beginning of the year, but it did not happen, and then she got much better (admittedly mostly because of her mood medication), and now, at the end of the year, she hit someone.  Last week she screamed at the para pro and today she hit someone.  I am afraid of what will happen next.  Why now?  It is the end of the year, she only has to make it less than two months more.  She graduated from OT and counseling, she is more verbal than she has ever been…but the last couple of weeks she has gotten worse and more aggressive at home and now at school.  I am sure she did not hit them hard, but she laid her hands on someone in an aggressive way, someone other than family.  I have no idea why she did not have to move her clip, why she still got “super green”.

I talked to her about the situation.  About how if she gets frustrated next time she should raise her hand and tell the teacher or ask to move.  Or, knowing how little patience M has, worst case I told her she should just get up and go to the teacher, to move away from the other person before she hit them.  “But mom,” she said “you can’t move during centers, it’s a rule.”  Ok, but I’m sure if you need to move so you don’t get so upset it will be ok.  “No mom, it’s a rule, we can’t move.”  Well, moving is better than hitting, I’m sure your teacher would agree.  Some rules like not moving are better to break than rules like no hitting.  “No mom, you don’t understand, a level 0 is no moving and centers are a level 0 so you can not move.  It’s a rule.”  Well, isn’t no hitting a rule?  (nods her head).  Ok then,  and you broke that rule.  “But they broke a rule first.”  Well you still can’t hit, so if you’re going to break a rule anyway it is better to get up and go to the teacher than to hit someone.  “But I can’t get up, mom!  It’s a rule!”

Ack!  It felt quite like an Abbott & Costello routine to me and I just had no argument left, so I left it alone.  She is so black & white in her thinking I think her teacher will have to give her special permission to move during centers if she feels like she is going to hit someone.  We had this problem with using her noise reducing headphones, as well.  We couldn’t just tell her she could go get them whenever she needed them.  She needed to be told specifically for each type of instance that she was allowed to use her headphones for those times.  Even now, if she forgets to get her fidgets for rest time, once she is on her mat she will not go get them or ask her teachers for them because it is quiet time and she is not allowed to get up or talk.  So I’m not sure why she can’t follow the rule about keeping your hands to yourself as strictly, I guess it is the impulse control part.

I know it is likely that this is a one time thing and it will not happen again, but I do not like the progression of her difficulty handling frustration at school lately.  Although we just recently saw her Psychiatrist it may be time to increase her medication now that she is growing and it seems to be less effective.  But sometimes it is environmental, such as the time from Thanksgiving until a week or two after New Years, when life was not as predictable and more sensory stimulating than usual.  I will have to be extra vigilant and figure out what is causing her difficulty and how to fix it.

In the mean time, I think I will have another brownie.

XOXO

Hugs & Kisses…that’s one of the things we love about babies & little kids, right?  Especially us parents.  K was an affectionate child, but always full of boundless energy and curiosity she didn’t sit still long enough to really get a good cuddle.  A is my cuddler.  She is always in my lap, hanging on me, wanting to be held by me, hugging and kissing me.  And I love it! 

M never wanted much to do with anything as an infant.  She was a disgruntled baby.  As a toddler and preschooler she would sometimes give hugs to certain people, and she would tolerate a tight hug for a minute.  She would never give kisses and hated to be kissed.  Light touches, whether on purpose or accidental, made her scream and fall apart crying at times.  This, along with her extremely rigid need for routine, were the things that first brought the word “autism” into the list of possibilities.

image

It is pretty painful to be rejected by your child.  M would not let me cuddle her, kiss her, sing to her, or any of the things I so wanted to do.  She really just wanted to be left alone.  But when it came to the sensory aspect of light touches and being sensory over responsive, the OT for the county school district helped me really see it from M’s viewpoint.  This is how she explained it:

Imagine you are walking down an alley in an unfamiliar city after dark, and you are lost.  Something brushes your leg and you jump, maybe scream.  Your heart is pounding.  Then you look down and see that it is a cat, and you are able to slowly calm down.  If the same thing were to happen on your own street during the day, you wouldn’t worry at all.  Or if it were to happen again your brain would know “oh, it’s the cat”.  But M is ALWAYS in the dark alley lost, and every time the cat touches her it is the first time.  Her brain doesn’t acclimate to sensory experiences and begin to register them as “normal” the way ours do.

Pretty intense, huh?  I sure felt a lot more sorry for her and a lot less sorry for myself.

After a year or so of OT, M became better.  She will sometimes give kisses to her dad and I.  Sometimes she will accept a kiss.  Hugs are still quick and tight but she rarely melts down at a light touch anymore.  I am so glad she doesn’t live in that sensory dark alley all of the time anymore.  She still has a lot of anxiety and rigid thinking, but we are working on one thing at a time, to help her feel more happy and comfortable in her body and in the world.

Struggling not to Compare

I wasn’t really sure what to write about today.  So many ideas.  Such a rough day.  I don’t even have a picture today, and I’m not even totally sure where I am going.

M had a rough day.  The last 2 1/2 weeks have been a bit rough, today seemed even more so.  M was alright in the morning, for the most part, so maybe it started with me.  Maybe it started with the observation.

As some of you know, I decided, at the ancient age of 31, to go back to school.  This was 2 years ago, almost exactly 2 years ago that I signed up for my first class, and going 2 classes at a time (and taking classes every summer) I am slowly but surely chipping away at my Associate’s Degree in Early Childhood Education.  Where I was before and what influenced this decision is a long story of its own, but one day I will have a dual Master’s in Early Childhood Education and Special Education…even if all of my children graduate before I do.  😉  Today for one of my classes I went to observe M’s best friend at a different school.  These girls have been best friends since they were about 6 months old and I am so glad that they are still buds.  Her mom and I get them together as often as we can and when M is upset she will often say she doesn’t love anyone in the world except her BFF.

When you see them play together you really don’t notice much difference, sometimes no difference at all.  The only time you can really tell that they are not both neurotypical little girls is when M is overstimulated or something happens unexpectedly to throw her into a meltdown but even that has decreased since she started her mood stabilizers.  Today, however, I got to see her BFF in a different environment, a learning environment and a social environment with a number of other children.  So today, I really got to see how different they are, and it made me sad.  I saw her BFF at recess playing and planning and laughing with the other kids.  I heard her read aloud a number of books…with expression.  I saw her draw a detailed picture and write a story to go along with it.  I saw her quietly follow the rules and ask the teacher when she needed help.  I saw her touch other children without being rough and not needing her teacher’s attention constantly and not yelling out answers or comments.

It’s not that M is always or never all of these things, but watching her BFF and the other children, who were all the same age as M, was difficult because I saw how different she really is, especially from her BFF.  It made me wonder if they will continue to be best friends as they get older.  I can not imagine what it would be like for M not to have her BFF, this is the one friend she loves so much.  She will often tell me she doesn’t have any other friends, especially at school…sometimes she interacts with the other kids but other times she insists the para pro and teacher are her only friends and she only plays with the para pro at recess.  It also made me worry about my decision to put M into young 5s K this year, kind of a remedial kindergarten for kids who are old enough but need an extra year to prepare.  I really felt strongly that she needed an extra year to get used to the routine, rules and expectations as well as to grow social-emotionally even though she was mostly ready academically.  Her BFF was in Kindergarten this year, so next year when M is in Kindergarten her BFF will be in first grade, and they will never be in the same grade.  They will not graduate at the same time.  M will always be behind.  I know neither of them are aware, or would even care if they were, right now.  But in a year from now, in middle school, in high school?  Will it contribute to them growing apart, or to M feeling “different” or not as good as her BFF?

I know I’m probably being dramatic and pessimistic and reaching.  I am usually very optimistic and positive about M’s struggles and life in general.  But some days I do get a little sad and worry about the future for my sweet girl.  I don’t think it would be as bad if she weren’t going through a difficult time right now.  She has hurt A several times over the last few days, pinching twisting and hitting.  Lots of her angry words that scare me and make me sad.  She hasn’t wanted to read or work on any of her new skills, but just to play Go Fish and listen to Taylor Swift and sort the business cards in her wallet.  Right now she is asleep on her bedroom floor with a body pillow and weighted blanket on top of her and Taylor Swift blaring from her MP3 player through her headphones.  It was the only way she could calm down after initially bringing her down a little by letting her suck orange yogurt through a straw.  Her sensory issues have been getting worse lately, probably because of her anxiety from being on spring break, then going back to school, then me being gone pretty much all day Saturday.  A is having problems with her asthma and if she starts coughing M screams at her to stop, throws things at her, tells her she’s doing it on purpose and she is going to move to Texas to get away from us all so she can’t hear A cough anymore.  So I know it will get better…M will feel better and calm herself better and most importantly I will be the happy optimistic parent I need to be in the morning.  In the meantime I need to remember how silly it is to compare and that M does not do what she does on purpose or even really out of anger, but out of fight or flight response (ASD/Anxiety) and out of an overwhelming compulsion to say and do certain things over and over to help her calm down (OCD).  She is doing the best she can, as well all are.  She is a very brave girl and I need to be brave for her, too.

Diagnosis what?!?

It seems, to people not dealing with special needs, that a diagnosis is simple.  It always seemed that way to me.  Most short or long term illnesses or diseases are easily diagnosed through relatively common tests (blood tests, radiography, cultures, etc).  Even some mental health issues are pretty easy to diagnose- depression, anxiety.  And then, of course, you might find out that some are not so easy to diagnose.

image

If you have a child on the spectrum, or are on the spectrum yourself, you know it takes a lot of time and a number of tests to get an ASD diagnosis, and even then it is not an exact science.  After 2 years of different doctors, psychologist, county school district testing, I finally got a referral to a Neuropsychologist to test for it.  2 days of testing.  Uncertain results, probably somewhere between Asperger’s and PDD-NOS.  Pediatrician marked Sensory Processing Disorder, Asperger’s, Muscular Coordination Disorder (Dyspraxia), Fine Motor Delay and Social Skills Delay.  Psychologist has Asperger’s or PDD-NOS, OCD and GAD.  OT (1 year ago) had Dyspraxia, Sensory Over-Responsive and severe Fine Motor Delay  School District (2 1/2 years ago, haven’t had her re-tested yet) said Sensory Processing Disorder and mild Speech Delay, mild Social Skills Delay.  Developmental Optometrist lists Asperger’s and Convergence Insufficiency.                                 
I thought her Psychiatrist had Asperger’s.  But he showed me somethingabout her medication on her paperwork, and I saw 2 diagnoses: Asperger’s and Mood Disorder-NOS.  I don’t know what to think.  What does that mean?  Does that mean he doesn’t think her behavior was a symptom of the Asperger’s?  (I say was because much of it has vastly improved on her mood medication).  Does that mean there is something else to add to the alphabet soup?  Does it matter if it is NOS (not otherwise specified), will we eventually have a name for whatever it is?

It shouldn’t matter to me, but it does.  Like maybe it shouldn’t have mattered to get an ASD (autism spectrum disorder) diagnosis, but it did.  I needed a name, because attached to the name is a description and a list of possible or probable symptoms and possible or probable ways to help her.  I needed that diagnosis before she started school because we were both petrified to have her start school and I needed to know what to do for her, what she might experience and how to most easily describe her and her difficulties to her teachers

And then, later in the week, I took my poor Amelia back to the doctor because of a UTI.  On her form it says MAJOR DIAGNOSIS:  Croup.  Obviously croup is not a major diagnosis.  But that is apparently how they are labeling her asthma, to see if she outgrows it, so it does not show up as a “preexisting condition”.  It just seemed odd, I would have expected “reactive airway disease” which is what they usually call it when she can’t breathe well every time she gets the sniffles or something.  And it made me think again how overly complicated the diagnosis game it.  We can’t call a spade a spade, there is too much involved…insurance, IEPs, 504s & other services available or withheld.  It is comforting to me that they show
major diagnosis and that any hospital or other medical institution would certainly recognize that as code for asthma in a young child and treat it accordingly.

I think we parents of special needs/chronically I’ll children deserve honorary Ph.D.s for all of our knowledge of terminology, tests, treatments, side effects, symptoms and for generally putting up with a plethora of doctors, therapists and specialists.

The siblings

image

All 3 of my girls on a family fun day

 

I talk a lot about M and her special needs (Asperger’s Syndrome, OCD, GAD, Dyspraxia, Sensory Processing Disorder, Convergence Insufficiency) but I talk less about my other daughters, her siblings.  I do occasionally post about K, age 11, who is profoundly gifted.  Less so about A, age 3, who has asthma and is likely highly gifted.  But what I really need to post about, and I don’t think we talk enough about, is how M’s special need affect her sisters.

K is significantly older than her sisters, and generally tries to avoid them by camping out in her room in typical pre-teen fashion.  She really is a good sister and does play with them sometimes, but overall they have no interests in common which is exacerbated by her high intelligence and creativity.  Just like M, her mind works differently.  Just a different kind of different.  She struggles to understand M and to be sympathetic, but it is difficult for her to even understand her neurotypical peers so it is truly a struggle.  We talk often about it and really sometimes she is the one to calm M down and give her exactly what she needs.  M loves her big sister passionately and misses her greatly when she spends time with her best friend, which is pretty much every weekend.  I was extremely touched a couple of weeks ago when K left her devotional out marked to an older page we had missed for one reason or another.  She told me this particular devotion was special to her and she wanted me to read it.  When I got to it that evening I realized it was about how God made everyone unique and special and told the story about the boy on the autism spectrum who was put into the end of the last basketball game of the season and scored several baskets.  She literally brought tears to my eyes (which doesn’t happen often, I truly hate to cry).

A loves her sister M so much.  They are 26 months apart but more like twins.  They used to never fight and play together and enjoy each other’s company constantly.  They are still best buds, but since A turned 3 and started preschool there is a little more discord in their relationship.  I think a lot of this is because A is learning to stand up for herself and realizing that M’s behavior is not always appropriate.  M also becomes upset with her more often because she is reaching M in some areas of development (exceeding social-emotionally) and because A is starting to express her own preferences versus always going along with what M wants.  Unfortunately A is often the person M takes her frustration out on, both physically and verbally.  This summer before M started on medication for her dangerous behaviors (physical aggression, talking about killing herself constantly, becoming hysterical and trying to run away or run into traffic etc) I was truly worried for A’s safety, but fortunately that is over.  M does still push, pinch, bite, hit and otherwise try to hurt though…usually A, sometimes K or myself.  We have zero tolerance for this behavior and while it is less frequent (usually high stress transition times…like spring break…) it does still happen.  She also has certain phrases that are due to the unfortunate combination of Asperger’s and OCD, which also makes them a very hard compulsion to break.  These include “stupid idiot” and “I want to kill you”, and are often screamed at anyone in her path (at home, but fortunately not at school yet), often A.  As you can imagine her self esteem suffers a little at times and her feelings get hurt by this language from someone she so truly loves.  She is the most easy-going, laid-back kid, but sometimes, especially when she is not feeling well, it is just too much and she needs extra cuddles and reassurance.  She also picks up on M’s undesirable behaviors and tries to mimic them sometimes.  Then we have to explain why, even though M is older, she can not always control what comes out of her mouth but A can.  Still, overall, they are good for each other.  A is a very loving, compassionate child who loves to play mommy, teacher and doctor and I can see her experience with M and their closeness making her wonderful at any of these endeavors.

I wish there was a support group for siblings that K could join, and maybe A later if she wanted to.  In the meantime I know I spend a lot of extra time and energy on M and she seems to get away with a lot more.  A manages to get a lot of time too, being the youngest and knowing how to use that pouty lip and big sad eyes against me as she does 😉  But I need to be conscious that as hard as tough weeks (like spring break LOL) can be for M and for me, they are also difficult for my other girls, who have no control over the meltdowns they are often in the middle of.  I need to make an effort to spend a little extra time with them and be extra understanding of them as well, as they probably also suffer from sensory overload after, say, riding home in the car with their sister screaming, kicking the door and threatening to beat them up.  ❤

image

M & A, best friends & sisters.

Tag Cloud

Life is all about how you handle Plan B.....

enjoy every moment, even the unexpected.

Gifted Atlanta

A resource for parents of bright and talented children

Writings of a Mrs Mommy

Writings of a Mrs. Mommy is the Mommy blog to my Writings of a Mrs's blog. This blog will be more about my busy life with 8 children and the many adventures on how the Mrs. and Mr. manage it all! Humor, stress, love, food and photos will be the main focus. Alex and Jenn plus kids make TEN!

Ginger Snaps

escapades in life, autism, and other shenanigans

Mama Gets Real

Mamahood is better when you are surrounded by Mamas.

This Side of Typical

Autism + Parenting + Peach Schnapps. Crazy Straw optional.

Laughing Through Tears

Two moms, four kids, many cocktails.

Musings of an Aspie

one woman's thoughts about life on the spectrum

the fairly good mother

... because you don't have to be perfect to be awesome ...

To Be Aware

It's all about disbelieving your thoughts

The True Power of Parenting

Emotional Intelligence for a Bright and Successful Future

The World of Special Olympics

The sun never sets on our Special Olympics Movement. See what's happening now...

It's my Asperger's

Living with Aspergers and ADHD

mamacravings

everything a mama could want

The Voice from the Backseat

One voice, and the journey along the way