Parenting a spectrum of girls

Posts tagged ‘special needs’

Countdown

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M & A dancing, posing, being silly

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

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

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

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

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

The worst obsession yet…

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Word…

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Our cat Recycle

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

Then there was Wednesday…

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

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

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

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

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

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

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

URGH!  REALLY?!?

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

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

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

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

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

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

Who needs social norms?

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My sweet M enjoying a weekend cookout

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

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

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

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

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

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

Taylor Swift

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My girl with a newly lost tooth

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

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

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

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

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

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

Social Skills

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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.

Food fight

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Everything is finger food…thankfully this is a bagel. 🙂

One common issue with an Autism Spectrum Disorder is food.  Many children on the spectrum will only eat food of certain colors or textures or even limit themselves to as few as one or two particular foods for long periods of time.  For a while when M was younger she avoided some food textures, especially soft or squishy foods, but for the most part she has been a great eater and we have not had to worry about her diet and nutrition.  In fact, last summer she tried crawfish, and loved it!  Now she wants to go to Red Lobster for her next birthday (sigh…McDonalds was so much cheaper!  lol)  The main side effect of her medication is weight gain, and she did gain 6 lbs in 4 weeks, but after that the weight gain stopped and she had previously been a little under weight, so the doctor was actually really happy with that.  He credits her ability to maintain a healthy weight with her high activity level and most of all her healthy diet…she loves fresh fruits and vegetables!

So we have not had issues with WHAT she will eat…our issues have been with HOW she eats. When M was a toddler, she was a legend among our family and at the daycare she attended.  People still talk about her, and the way she ate.  She was the MESSIEST CHILD EVER!  I am not exaggerating.  Anything that went into her mouth she had to spit out, touch, then finally put back into her mouth to finish eating.  She never used utensils and even with her hands was not very accurate at getting the food into her mouth.  It went everywhere.  She needed a bath after every meal.  I work with infants and toddlers, and I know that some of them, especially the ones that really love their food, can be a real mess sometimes.  But M was a disaster at every meal, far past the time she should have been using utensils and eating neatly.  At least she did not disappoint for the big first birthday cake photo.  My oldest daughter neatly ate hers without a mess at all…no good photo/blackmail opps.  M, on the other hand, was a beautiful mess.  It was a lot of fun!  🙂

By the time M went to Occupational Therapy shortly before age 4, she would use utensils sometimes, only if they had plastic handles.  Restaurants have been a nightmare for several reasons, but one of the reasons at that time was that if I forgot to bring a plastic handled fork in my purse especially for M, she would have a meltdown and not eat.  She was still very messy.  By the time she finished her first round of OT about 6 months later she was, although not super neat, still a much cleaner eater and better with her utensils.  I’m not exactly sure when it happened, I think around the time M started school this year, she stopped needing plastic handles on her utensils.  M still often has food on her clothes after a meal, sometimes even all over her pants and shirt.  Tonight she had tilapia in her hair.  But overall she is much better.

The past few months, M has pretty much stopped using her utensils again.  I am not sure how much of this is fine motor difficulty, how much of it is sensory related, and how much (if any) of it is related to her eyes not working together.  It will be interesting to see if she is able to use utensils again after she gets used to her glasses (which should come in in the next day or so).  It was pretty odd to watch her tonight eating her dinner (tilapia, potatoes and peas & carrots) entirely with her hands.  She even scooped the panko breading (insisting it looked “gross”) off her fish with her fingers.  Yuck!  I will take it, though.  I would much rather have a 5 year old who eats with her hands than face some of the food challenges so many other parents have to work with.

The triple brownie day

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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.

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