Aspergers or not? Does it really matter?

When we received Lovebug’s diagnosis of Sensory Processing Disorder and ADHD, we were also told that it was “highly probable” that she had Asperger’s.  The doctor said that she was able to find a couple things that kept her from diagnosing Lovebug with Aspergers, and that she was glad because she didn’t like to diagnose kids that young (5).  She said that often the things that look like Aspergers are outgrown as they mature a bit.  At the time, I thought the “couple things” she found weren’t accurate because Lovebug behaved differently alone with the doctor than she usually did at home and her regular settings.  This doctor is also the one that performed Wechsler Intelligence tests and determined Lovebug to be highly gifted especially in her reading & verbal language skills. I knew from my research that there are a lot of similarities in the behaviors of gifted children and children with Aspergers, so it could be tough to tell the difference at such a young age.

Still, I wasn’t too sure, and we felt very strongly that we should approach her therapy, schooling, and general raising and discipline as though she had it.  It explained so much that I was thrilled to have an “answer” for her behavior, resistance to change, and her rigid ways of thinking.  Reading books, websites and talking to parents of Aspies gave me so much insight into my daughter, and so much of what they recommended worked so well for her.

I have to say though, that as she’s gotten older and more time has passed, I’m becoming convinced that she does NOT in fact have Aspergers.  That doctor just might have been right. 

I’m thinking that the things that made us look at Aspergers in the first place, are just who she is. 

Things like:

* She is extremely literal, she always has been.  Even at the age of 2, she would correct me when I said “pants”, telling me “there is just ONE pant”.

* She’s very left-brained, notices details – all of them.

* She’s a rule follower to the letter.  If I put 5 pieces of candy in front of her, told her she could have 2, and left the room, she would eat 2.  No more, no less. 

* She is obsessed…obSESSED…with animals.  For the longest time (2 years) it was just elephants, so that made us lean toward the Aspergers diagnoses even more, but she gradually expanded to include more and more animals.  She loves animals, but she also loves science, so maybe it’s just her “thing”, ya know? She may just grow up to be a zookeeper!

* Have a formal style of speaking that is advanced for his or her age. For example, the child may use the word "beckon" instead of "call" or the word "return" instead of "come back." —- She does speak formally at times, but I think that’s just because she reads advanced books, and she is used to reading that type of language, so it comes naturally to her.

 

However, there are things that are typical for most Aspies that don’t apply to her, like:

* Not picking up on social cues. —- I used to think this was a problem for her, but as she grows I think it was just immaturity.  She actually does this very well now.

* Be unable to recognize subtle differences in speech tone, pitch, and accent that alter the meaning of others’ speech. —- Actually, she notices very subtle differences in vocal tones, and is very sensitive to me changing my tone as I speak to her.

* She’s really breaking away from her rituals and what I referred to as her “ocd” behaviors.  A couple years ago we had a meltdown because I wasn’t going to let her say goodbye to each and every stuffed animal in a store.  Seriously.  The stuff she does now just seems like things most kids would do.

* Eye contact – she still doesn’t like to look me in the eye when I’m talking to her, especially when she’s in trouble, but she does it a lot more now.  I think it’s more of a self confidence issue, actually.

* Limited range of interests —- She has quite a wide range of interests now.  She prefers animals over anything, but she also loves karate, ice skating, camping, and other activities.  She loves to read books about almost anything – science, nature, transportation, animals, mysteries.

 

A lot of Aspies deal with Sensory Processing Disorder as well, so those things also cause the lines to blur.  The SPD affects her motor skills – both fine and gross – which lead to other symptoms.

Because she’s gifted in some areas, and challenged in others, it can further blur the line. This is a condition referred to as “Twice Exceptional” where people are gifted in some areas, yet have learning disabilities in others. 

She is awesome at reading! She pretty much taught herself and was reading at a very early age.  At the age of 6, she is reading on at least a 4th-5th grade level.  Unfortunately, the content is not always age appropriate, so she reads a lot of books that are on her AGE level, but she goes through them lightening fast.  She also loves math & science and is very good at both.  Definitely takes after her Daddy!

On the other hand, she is very challenged with handwriting.  It is beyond frustrating for her and we’ve both shed many a tear over it.  We are taking it slow and steady, but we have a long journey ahead of us in this area.  She also has some auditory challenges that come from her Sensory Processing Disorder that make it hard for her to follow verbal instructions because she often doesn’t hear all the words spoken to her, or all the surrounding sounds blend together which can be very confusing.

 

Lately, a few things have stuck out with me as I’ve really studied her these last few months.  I noticed even more as we’ve gone through this entire move process.  We’ve just thrown more changes on her in one month than some people experience in a decade, and you know what?  She’s handled them like a CHAMP!  She has surprised me in so many ways!

My child that I thought hated change, has embraced this life change with gusto.  We have not had one single meltdown over the changes.  Not one.  Granted, we’ve done a lot to keep things similar for her, but not everything.  We brought some of her bedtime things – her blanket, pillow and favorite stuffed animal.  But lots of things are still packed away, and we’ve been living in a hotel for 3 weeks!

She has a light to read by at night, but it’s not HER light.  Or HER clock.  I can’t tell you how many times we’ve had to take those things on trips with us just so she could relax. 

She also hasn’t asked even ONCE for us to write down what time she is supposed to get up in the morning.  At home, we had a white board in her room that we had to use because EVERY. SINGLE. NIGHT she wanted us to write down what time she was allowed to get up.  When we went on vacation a couple years ago, we had to write it on paper for her or she couldn’t go to sleep.  I know those sound like little things for most people, but for the past few years, these have been HUGE, meltdown-causing issues for us. 

Last week, I went to a women’s Bible study (I’ll post more about that soon) and she went into a room for homeschooled kids.  A new place, a new building, a new room, a new teacher, and new kids.  Any one of these things would have been enough for a meltdown in the past.  I was fully prepared to not even make it to the Bible study in case I needed to stay in the room with her. 

Turns out she didn’t need me at all!  She immediately opened up and talked to the teacher, and made a friend before I even left the room.  They struck up a conversation and were asking each other what they liked (they both love dinosaurs!) and having a great conversation.

She was a bit nervous when we went back this week, but only a little quiet nervous…not “I don’t want to go” nervous.  Totally appropriate feelings for the situation!

 

Over the past several months, I’ve seen her growing by leaps and bounds in her social skills.  She has been playing so much better with other kids, making friends quickly, and using appropriate words to communicate with them.  It’s been a very long time since I’ve seen her growl at someone on the playground because she didn’t like what they were doing, or acting like an animal because she was nervous instead of just talking.  She’s reading social cues, facial expressions, she’s extremely empathetic, and while she still interrupts – it’s now at an appropriate level for a young child, rather than because she has no clue that other people are talking.

She’s also FUNNY!!! I mean, she’s always been funny to me – singing silly songs, or doing cute things.  But now, she has a sense of humor!  She’s still very literal and doesn’t get some of our jokes, but she gets a lot of them.  She even tells us her own – either ones she makes up, or ones she’s memorized from a book.  Love it!!

 

So, where does this leave us?

I don’t know.  It’s not like we need to do anything different, really.  I find that when I focus strongly on her SPD, and take the steps to make sure she receives sensory “therapy” every single day – enough exercise, exposure to different textures, pressure techniques, massages, swinging, heavy-work – that she does incredibly well.  When I slack off on those things, we see the negative results for sure.   I’ll continue to work with her at home as we homeschool, do sensory activities, and basic therapy activities that I can do myself. 

What to do with a very active child in a hotel

I’ve talked before about our trampoline – the best thing ever – and how Lovebug uses it every single day to help burn up some of her excess energy.  We are now on day 16 in a hotel and we have another week to go before we’ll be in our house with our household goods, so we’ve been making the best of it, but boy, do I miss that trampoline!!

Thankfully, we’ve been able to get out & about almost every day which helps a ton, but for those days we are stuck in the hotel and Lovebug’s energy is bursting at the seams we make use of the hotel’s gym!

IMAG1316

Hubby and I have taken her in there with us several times.  She sits on the side and reads a book while we do our workouts.  Then, once we are done and can supervise her, we put her to work on the elliptical machine!  Don’t worry, it’s not even on! That doesn’t stop her though.  She spends several minutes “running” and exercising her arms which helps use up some of her extra energy while giving her a thrill.  She thinks it’s so fun that she begs us to do it! When she’s done, we have her do some bicep curls and exercises with 3 lbs weights for some heavywork.

It’s all about being flexible and working with the tools at hand!

A very out-of-sync morning!

We had a really rough time during school yesterday morning.  Lovebug had a serious meltdown!  We were working on schoolwork this morning, and she mentioned (nicely) that she didn’t want to do something we were working on.  I asked her (nicely) “Why don’t you want to do that?”, and she lost it.  She started crying and breathing hard and having what looks like a panic attack. She kept saying that she didn’t know the answer to my question.  It was such a simple question, but she was reacting as though I asked her for the square root of Pi.

She was SO frustrated with herself for not being able to answer the question.  Her brain was in serious overdrive and she just could not think. 

She was smacking herself on the head as if it would shake the answer loose.  She was crying and practically hyperventilating.  I had to make her stop trying to talk until we got her breathing under control.  She said at one point, “I don’t know the answer! You want an answer and I don’t know what to say!”.  She said she didn’t like feeling frustrated.

I’m not sure what set it off. The schoolwork wasn’t anything hard.  We did get out of routine this morning, but only because her Granny had spent the night and we spent part of the morning playing – something we’ve done lots of times.  Then, I did have a friend stop by to drop something off, and Lovebug went into hyper mode, so she might have been still going a bit from that.

This went on for over an hour.  I sent her to her room a couple times to sit in her swing and just try to calm her breathing down enough that we could talk.  I don’t know what triggered it, but somehow her brain was just overloaded and she couldn’t even put together a simple answer to a simple question.  I can’t imagine what that felt like for her, but it was heartbreaking to watch.  I know how I get slightly frustrated when something is on the tip of my tongue and I can’t think of the answer.  For her, this was so much worse.  It’s like she felt like she wasn’t smart, or she was making a mistake not being able to answer. 

The look on her face hurts me so much.  She looks scared, panicked, even terrified – like she doesn’t know what’s going on with her body.  Or she’s anxious and worried that she’d doing something wrong.  It breaks my heart to see her get so upset and mad at herself.  I hate to see her hitting herself in the head.  I just wanted to wrap my arms around her and hold her tight.  My poor girl.

But I can’t just do that, or I could set off another attack if she’s not wanting to be touched.  So, I asked her from time to time if she wanted me to hold her.  She did a little, but not much. 

When we were able to talk, we discussed using words like “I don’t know the answer right now” when that happens.  I told her it was ok if she didn’t have an answer.  Sometimes we aren’t sure why we feel a certain way about something. 

Once the episode was over, she calmed down and we talked for a couple minutes, and then she started slapping her legs and grabbing at her arms.  I asked her why she was doing that now, and she said she needed the pressure.  I was SO PROUD of her for telling me because then I could help! We were sitting on the bed, so I had her lay down and I put a pillow over her and pressed down on it giving her firm pressure up and down her back, then legs, and arms.  Like a really good massage.  After a few minutes of that, she was good as new!

We ate lunch to refuel her depleted body, and then we got out of the house for a couple fun errands and ended up having a great day.

I wish I could stop this from happening to her.  I was thankful I was at home, for both our sakes.  It’s things like this that cause the stares and judgment from people in the stores as they assume it’s all a behavior problem.  It’s times like this that made me speak up to that woman in Walmart. Oh, if it were only as easy as a behavior problem!

Some days are just hard.

Helping your SPD kiddo & guests enjoy each other

Lovebug gets so excited when friends or family come to our house.  Over excited, actually.  For a long time, as soon as I opened the door to let in a grandparent, she would start running around in circles screaming or laughing hysterically while the grandparents stood patiently waiting for their greeting.  Not the warmest welcome!

I would have to literally catch her, and give her instructions such as “Say Hi Grandma” or “Do you have a hug for Granny?”.  She would barely greet them before she was off running again.

Awkward.

Now, we handle the greeting much better.  We’ve practiced social stories and walked through the scenarios before they happen. Before our guests even arrive, I remind her that when the grandparents arrive, we are going to open the door, use our words to greet them, and give them a hug if she wants one.  At the very least, we are going to open the door and nicely say hi to them.  Then, if she has something to show them or something she’s wanting to tell them she needs to wait until everyone gets ALL the way in the door and they all say their greetings to each other.  Then she can ask them to come play in her room, or show them her latest special treasure.

Once someone knocks on the door, I quickly remind her again, “Remember, we are going to greet them first with our words.”

It’s not perfect, but it’s better.

I also used to just let her have free time with the grandparents when they come over, but I’ve learned that gets her too wound up.  She gets so excited and she ends up bouncing from one thing to another, ending up in a high that is hard to come down from.

Now, I choose activities ahead of time and then adjust them as I monitor her mood.  If she’s in an imaginative mood and can handle some freedom to create, then Legos, Tinkertoys or racing die-cast cars are a great option.  If she needs to be focused on a specific task, we might read a book, do a puzzle, color a picture, or even watch an episode of a cartoon.  Sometimes a board game is the perfect thing to give her a task to focus on, while interacting with our guests.  Other times, her energy level is so high that a board game would be a nightmare.  Some games are more active than others too, so while sitting still for Candy Land might not work, something active like Hullabaloo or Super Stretchy ABC would be just right!

2010-01-08 107 2010-01-08 102 2010-01-08 103

Last time Granny was here, Lovebug wanted to keep our score while Granny and I played bowling on the Wii (She prefers other games, so when we bowl she prefers to watch over play).  She made a chart and wrote down every single score in her own code (S for strike, SP for spare, along with a number telling if it was our first spare, or third strike, etc).  It was perfect for her – fine motor practice, handwriting practice (that she thought was FUN!), and it kept her relatively still while providing her with enough input that she didn’t get too “low”.

2011-01-07 0112011-01-07 012

Today however, Granny was here again and we were bowling.  Lovebug wanted to keep score, but this time it didn’t work.  We’d had a busy morning, she missed her rest time, so her system was a little out of sync.  Her handwriting was harder for her, which made her frustrated with herself over every mistake.  Also, her focus was off, so she kept having to ask us over and over what she missed.

I finally suggested nicely that she take a break from keeping score and just color.  I told her that her brain was tired from such a busy day and probably just needed to do something more relaxing.  That worked wonderfully.

Then we moved on to one of my favorite tools for times like this…MODEL MAGIC!!  This stuff is AWESOME!  It’s more spongy than Play-Doh and it doesn’t crumble, even when it’s dry.  You can leave your creation out for 24 hours and it will dry for you to keep, or you can store it in an air-tight container to reuse over and over.  The color doesn’t come off on your skin, either.  It’s just great – you should try it.  No, I don’t get paid by them, I just love the product that much! (Although if anyone wanted to send me some, I’d take it!)

I put Lovebug and Granny at the table together and give them each some Model Magic and some tools.  They can work together or independently, while still getting to chat.  The molding and shaping are great for Lovebug’s hands – they give her hands something to do, and provide her with sensory input.  She’s not competing with anyone, and she doesn’t have to be coordinated.  They played for about an hour and we only stopped because it was time for dinner.

If I’m leaving Lovebug with a grandparent alone, I choose several activities and put them in a box for them to choose from.  That way, they have something specific to do and can change activities based on her needs.  I’ve seen, and I’ve been told from the grandparents that this works MUCH better than just “do whatever”.

Having a successful visit with guests at our home is all about monitoring, being proactive & being prepared! A little preparation ahead of time makes for a wonderful time and great memories.  Failing to do that results in chaos, tears and frustration.

What are your tips for helping your child enjoy visitors?

Learning to adapt when plans change

It’s hard when we change the plans on our kiddos sometimes, isn’t it? It’s funny that my daughter can be so easy going about some things, and so rigid about others.  She’s been completely fine with the foster kids coming and going in our home.  She’s ok that we don’t know which state we are moving to yet – just that we are going.

Then there’s the other side…

If the pants she wanted to wear today aren’t clean  – meltdown!

If I said we were going to the park, but it rains – big problem.

If we don’t have her favorite stuffed animal in the car with us and we stay out till dark – watch out!

The fact that Netflix says “just a moment” and it takes more than ONE moment….bugs her and she lets me know it EVERY. SINGLE. TIME.

This weekend, she is spending time with my parents.  The plan was for her to go over there Friday and come home Sunday afternoon.

Then, my mom called a couple days ago to tell me she got tickets to a rodeo (which my daughter LOVES!).  But it’s for Sunday NIGHT.  At bedtime, actually.

Lovebug is usually ok staying out late every once in a while as long as we can adjust for it the next day.  This was pushing it a lot since it’s out late and they will have an hour long drive home, but I knew the next day could be low-key for her, and it’s the last weekend she’ll spend with my parents before we move.

So I had a talk with Lovebug to see if she would still be ok with this.  I let her know that she would be coming home on Monday instead so they could go to the rodeo.

She flipped out!  “But I was supposed to come HOME on Sunday.  That wasn’t the plan! I like to have a plan!”.

It completely messed her up.  “But I don’t know what they are going to DO at the rodeo! I don’t want to go!” (she’s been to 2 before)

I talked her through it and reminded her that she loves the rodeo, what she would see there, and that this was her weekend with my parents before we move.

She finally said, “Can I just go think about this for a minute?”

We were in the car, in a bookstore parking lot.  Ummmm, sure. So she went to the back of the minivan to think.

She came back up a couple minutes later and said she was ok with it now that she had given it some thought.

I LOVE that she self regulated that!! She just needed time to get herself used to the idea and the new plan.  If I had accepted her first answer, she would have missed out on a fun time.  She thought it through, weighed the options, and made a decision.  I was so proud of her!

Thankfully, I know my mom will monitor her activity, sensory needs, and food intake, all of which are critical to making the late night work for everyone.

What do YOU do when you have to change plans for your child?  How do you prepare them or manage the situation? I’d love to hear from you!

The 30-second-hug that lasts a lifetime

My daughter doesn’t like to cuddle. She never has, even as a baby.  We used to rock her before bed each night and sing songs to her.  As soon as she could speak she would try to pull away from us, lean toward her crib and say “Bed!”.  I can count on one hand the number of times she’s fallen asleep while one of us rocked her.

When she says “Let’s cuddle!”, she really means “Let’s hug for 5 seconds before I start jumping or bouncing next to you”

I remember one day when she was about 18 months old.  We were watching a Barney show and she came over and sat in my lap on the floor staring at the screen.  I didn’t move a muscle.  She never did that, and I was prepared to sit there all day if it meant I got to hold my little girl.  She lasted about 10 minutes before getting up and moving on, but that memory and the warmth in my soul have remained for years.

Every morning when Lovebug gets up, she comes in the living room.  Not to greet me with hugs & kisses, but instead to find the cat and give her cuddles.  Sometimes I get a “Hi Mommy” first, but then the cat steals all my attention.  I always have to ask if I can have a good morning hug.  She complies by leaning into me and “allowing” me to hug her while she’s still talking to the cat.  I’ll be honest, I don’t like it.  I’ve learned to live with it, sure, but I’m jealous of the cat.  How sad is that?

Yesterday morning, she came over and gave me a hug.  A REAL hug using both her arms! WOW! She held on for a bit and I once again thought that I would sit there all day if this would last.  I could see the clock from where I was and in reality it lasted less than a minute, but it was priceless to me. 

I don’t know if she’ll ever understand how much her hugs mean to me.  How much I need them.  We’ve learned to compensate by having tickle fights, pushing her in a swing, and doing Noggin-Nose-Cheek-Kiss-Hug at bedtime.  These are ways that we get to have physical contact with her without it bothering her.  I have no doubt that she loves me with all her heart.  She shows that in so many ways.  Physical touch is just rarely one of those ways, so I cherish each and every hug I get because it might be a while before I get another one.

Homeschooling with SPD: Handwriting / Language Arts

IMG_0364

One of the hardest things for me when teaching my daughter is the huge ability gap between different subjects, or even within a subject.

For example, she reads on at least a 3rd grade level.  It’s likely higher, but I haven’t ventured any higher because it’s hard enough finding age appropriate content in a chapter book.  Thankfully, she still loves to read “easier” things like Dr. Seuss, and various picture books – but she blows through them in seconds.  She taught herself, and I can’t explain it.  I’m super proud of her, I just wish I knew the secret.

Her phonics and spelling ability are more on age level, which can be a challenge in relation to the reading.  She can read difficult words, but not sound them out or attempt to spell them.  She can read the word on paper, and she knows the sounds the letters make, but she can’t always *hear* them when trying to sound out a word to spell it.

This makes it hard to find a specific homeschooling curriculum for Language Arts.  She still needs to learn the Kindergarten phonics rules, but the readers that some curriculums use are way too easy for her.  Last year I tried to buy up a couple levels for one curriculum so that the readers (for the child to read) would be more on her level.  However, what I failed to consider was that the rest of the language art lessons were then much too advanced for her – especially the copywork. Some of the days had several sentences that they were supposed to copy.

We are still working on writing capital letters correctly.

Handwriting, is incredibly hard for Lovebug.  Her gross and fine motor skills are delayed so it’s physically difficult for her.  She’s also a perfectionist, so it’s emotionally hard on her as I correct her hand position or remind her to start her letters at the top.  Today we were working on the letter A, and she traced the capital & lowercase version 5 times each.  After that, she was to color a picture of an alligator. Normally, the coloring is relaxing for her & she loves it, but today it was extremely stressful.  Her fingers were tired from the letter tracing, her mind was tired from agonizing over her mistakes, and she was practically in tears trying to think about what color she wanted to color the alligator.  She said “I just can’t figure out where to start!”

It’s like her brain just says “I quit! I’m not thinking any more!”.

I use the Handwriting Without Tears program and LOVE it! It is a program created by an Occupational Therapist and uses a multi-sensory approach to writing.  It’s awesome for her and is definitely helping.  It’s just that when we take a break (like over the holidays), any ground we’ve gained…we lose.  I guess I need to stop taking breaks.  We are using the Preschool workbook right now, and once we are done with that we’ll move on to the Kindergarten book – even if she’s in 1st or 2nd grade.  I told her I don’t care how long it takes her, I will keep working with her until she gets it.

I changed one thing this year over last year that has helped minimize both my stress and my daughter’s.  When I am teaching handwriting, we spend 10-20 minutes on it and I correct her hand position, letter formation or pencil grip as needed.  Once the handwriting lessons are over, I’m done correcting.  If she wants to write a card for Daddy, or copy words from a book, or write in her adventure journal – she can do it freely.  This used to bother me because I felt like if she keeps practicing it wrong, it will be that much harder to teach her the right way.  However, that backfires too because if I spend so much time correcting her, she feels like a failure and hates writing completely.

I’ve noticed this year that she has many times initiated writing on her own.  She’s written a story, added words to a poster, and several other things that she would have never done if she had expected me to correct her every move.  This way, I can encourage her to enjoy writing, while also spending an appropriate amount of time each week teaching her how to do it correctly.

We’ll get there.  Eventually.  Then, she’ll learn to type and never handwrite anything again.

What have you found that works for you? Or doesn’t work?

Handling the holidays with special needs

We’ve had a lot going on lately, and sometimes it’s hard to manage Lovebug’s sensory needs in the middle of all of it.  I’m still learning so much about her, what she needs, how to be proactive, and how best to help her.  We’ve been dealing with this at some level for years, but we didn’t know for sure what we were dealing with until just a year and a half ago.  Sometimes I feel like I’ve got it down and it’s smooth sailing.  Other times I feel like I’m such a newbie at all of this.

Some of the other blogs I follow have done such a great job at giving tips for making the holidays easier on our kids, and on ourselves.  Like this post by Hartley’s Life with 3 Boys.  It’s an awesome post that I wish I had read before Christmas! I definitely need to catch up on my favorite blogs.

Over all, we did try to manage Lovebug’s sensory needs, but I definitely could have done a better job in some cases.

Things we did right:

* At the beginning of December, we wrote out all the fun activities we would be doing that month, so she was prepared.  We do this every month, but December was particularly full of activities.  I also let her know which ones were mandatory, and which ones were flexible in case she needed an “at home day”.

* We limit the transitions by having Christmas lunch at my parents house, along with the in-laws.  No driving from place to place or rushing – we just all gather together in one place!

* Made sure to pull her aside from time to time during the festivities to give her a break from all the noise.  Even when she’s surrounded by people she loves, it gets overwhelming listening to 10 people all talk at once.

* Asking the grandparents to limit her gifts to one package to open.  By the time she gets one from everyone, it adds up.  Most of the time once she’s opened one thing, she just wants to focus on that and play with it.  She gets over-stimulated with too many things to open at once, and then gets confused about what she should focus on and play with and that frustrates her.

* I relaxed on her clothing.  I didn’t care that she wore snow boots instead of dressy shoes to Christmas Eve services at church.  In fact, I thought it looked super cute!  I didn’t buy her a new Christmas outfit for Christmas Day because I just wanted her to be comfortable and happy, not cute and miserable.

* We put sensory chew toys in her stocking so she could use them right away.  We also gave her food treats that we were ok with her eating right away instead of a lot of sugar that would cause bad reactions, or get taken away right after opening – neither of which is a fun option.

Things I need to improve on:

* I didn’t bring a “chew toy” or gum for her to Christmas at my parent’s house.  We finally managed to round up some rings for her to chew on when she was feeling the need, but it was almost a major problem.

* I went to visit some friends for a couple days this week.  Lovebug was having such a great time playing with the other kids, and I was having fun chatting with my friend…that I ended up letting her go 5 hours without eating!  She didn’t even ask for food, which is unusual, so I didn’t even realize the mistake until the meltdowns started and it was too late.  Thankfully, some isolation for a few minutes and some protein fixed the problem.  We recovered, but I should have been proactive and made her take a break for a snack so that never would have happened.

* I tried once again to give her Christmas PJs on Christmas Eve. This was once a tradition when she was too little to tell us her preferences.  This is a tradition that ends this year.  Next year, we will start a new one that works with her needs.  I thought I had found a great pair of PJs that would work for her, but nope!  So, she gets all excited about opening the present, only to be disappointed that they weren’t comfortable.  Good thing she was perfectly satisfied to go put on her favorite jammies that she “wears every single day in the winter”! There is just no point in beating a dead horse and trying to make this work.  I need to choose one that works for HER.

* I need to notice when she is needing proprioceptive input sooner.  I find myself saying “calm down, let’s get control” or something similar way too much when what I really need to do is go throw her on the bed and tickle her for a few minutes, or have her carry a heavy box into the other room for me.  Once the light bulb goes off and I do these things, it makes a WORLD of difference.  I need need to catch myself sooner.

I’m sure there are many, many more things I could put in each of those categories.  We are still learning, and trying to figure it all out.  She hasn’t been in any sort of therapy this past year (couldn’t afford it with our insurance), but we are hoping to change that.  Ideally, once we move and get settled we will get her re-evaluated and hopefully start some OT.  At the very least, I am going to continue to learn all I can about her SPD and increase our therapies at home.  What we do works, and helps a LOT, but I know there is more I can be doing.

Now, to focus on how to manage the transition of moving across the country with her.  Thankfully, she’s excited about the move, but we will spend 2 days in the car, a night in a hotel, then 10 days living in temporary housing before moving into our new place.  WHEW! That’s a lot of change.  Will definitely need to manage the SPD and ADHD during all of that!

Fingernail Painting in a Sensory World

My daughter came to me a few days ago and said she wanted me to paint her fingernails.  Actually she said, “Will you paint my nails for me pleeeeeeease?”

*cringe*

Did she not remember the last time?

Sure, she looks super cute with her colored nails, but it’s quite the process getting there.

She can’t sit still.  It’s hard to paint a moving target.

She doesn’t like light touches (like the brush in the fingernail paint).

She can’t stand for me to groom her nails in any form.

But, she wanted them painted.

Not just painted, because that would be too simple.  My little Aspie had RULES for me.  She had it all planned out.

No surprise.

She wanted her thumbs painted white, then the fingers alternating red, green, red, green on one hand and green, red, green, red on the other hand.

Then she wanted her toes to be the exact opposite of her hands.  On each side.

I’m glad she thought this through.

I really wanted to do this for her, so I prepared myself.  She wanted it, so I wanted it for her.  I also wanted to enjoy it with her.  We picked a time when I knew I would not be rushed.  She got out the paint, with explicit directions from me not to open it! Then, we laid down a towel for her to put her feet on while I painted them.

I kept the paint out of her reach to avoid any accidental kicking over of bright RED or GREEN polish.

As I’m preparing to start, she reminds me of the plan.  “Remember, I want this toe green, this one red, this one green, and this one red.”

I got it!

I touched her first toe with the brush.  She jumped.

Paint got on her toe, and I went to wipe it off.  She jumped again.

I explained (again) nicely that she has to sit still if I am to do this.   It’s like telling a cat to stay still as you throw it into the bathtub.

I continued painting, and she was actually shivering.  Not from cold, but just from trying to keep herself still.  She had her arms wrapped around herself in a hug, and was physically shaking.  My poor baby, I felt for her!

I’ve heard of the price of beauty, but this is crazy.  But, she wanted it.  So I wanted to do it for her.

I had her sit on an air cushion which helped because she could at least wiggle her bottom a little.

Ok, feet done.  Now the hard part (or is that another hard part?) – keeping her feet still so she doesn’t just rub the paint right off onto her leg, the floor, or me.

We took a little break, and I had her wiggle her top half while keeping the feet still.

Then we attempted the hands.  Again I touched her nail with the brush.  Again she jumped.  I wiped.  She jumped.

Eventually, we got all 20 digits painted, and the lids closed on the jars of nail polish.

Now just to get through the drying cycle.

I had her stand on the trampoline and bounce, while still being careful of the toes, and I turned on a cartoon for her to focus on.

It worked!

While she was drying, I painted my toenails all green – I was done with the alternating!  Then, I put her through one more painstaking process of being still as we sat on top of her play table to take this picture!  Festive, don’t you think?

2011-12-16 013

She loves it and has pulled off her shoes in public to show many people.

It was worth it.

How Great is Our God!

I have to brag on my daughter! It’s my blog, I’m allowed!

2011-12-04 002

My daughter is a lot of wonderful things.  She’s smart, funny, a great reader, a colorful dresser, and a lover of animals…but a stage performer she is not.  She doesn’t like to talk or sing on stage or in front of anyone.  She gets nervous and starts pretending to be an animal – a coping mechanism of hers.  Part of it is just being a bit shy, and part of it is her extra high anxiety levels due to her being on the Autism spectrum with Asperger’s. She loves to sing, and will sing at home, in the car, and in the bathtub…just not in front of other people beyond her family.   She also has some serious song-writing talent.  She makes up the most amazing original songs off the top of her head and will sing them with passion….as long as there are no more than 1 or 2 people around, and that they are people she knows extremely well.  I keep telling her she doesn’t have to be in the spotlight – one day she might write a song that someone else performs on stage.

At church, she will sometimes barely mumble the words to a song if she’s being held by Hubby or me.  She has this fear that all the people in the room are going to be looking at her and judging her.  It’s so real to her that we can’t convince her otherwise.

Today was different.  It was AMAZING!  It was nothing short of the Holy Spirit’s power on her.  This morning our worship band, Dutton, was leading us in singing one of Lovebug’s very favorite songs that we’ve sung with her since she was a baby – “How Great is Our God” – when suddenly she starts belting it out like nobody’s business!  She was singing like she was the only one in the room.  Seriously off-key and absolutely beautiful! It was literally music to my ears!  I got tears in my eyes, and my smile must have been a mile wide as I sang along with her.  Oh, I wish I could have recorded it!

I can only imagine how proud God must have been! I felt like a mom whose child had spoken for the first time. I leaned down and told her she was making God smile so big!

After the song finished our pastor, who was seated 3 rows ahead of us, turned around and gave me a thumbs-up and said “That was great!”.  I thought to myself, “Yes it was! But it was so much more than great.  It was truly Spirit-filled!”.  For a lot of kids, that would have been just another song.  For her, it was a miracle!