S(o) P(roud) of my D(aughter)

This is now what SPD is going to stand for in my mind.  And the truth is, I am so proud of her.  Every day of her life, she struggles in one area or another.  But you know what?  She keeps on going.  She won’t let it keep her down.  Some days she gets the crap beat out of her.  But she always bounces back and says, “I want to have a good day today.”  And that is exactly what she decides to do.  I can’t imagine going through the intense therapy she has been through.  I can’t imagine having my own hair bother me so badly that I can’t fall alseep.  It’s amazing that she’s not a little tyrant!  If you ever met her, you’d think she was the sweetest, most polite, little girl you’d ever been so privileged to meet.

Time for a change

(I promise this has nothing to do with Obama!)

I have been a stay at home mom for 8 years now.  I have whole-heartedly devoted myself to my family.  The problem is that sometimes I get lost in the mix.  Sometimes it’s hard to even remember who I am or what I love to do.  I know this is a common phenomenon for parents.  (It’s even common for people to throw themselves into their jobs, or school, or whatever.)  I don’t even know if it’s necessarily bad.  It just is what it is.  When life comes at you hard and fast, sometimes you’re doing great if you are surviving.  The good thing is that there usually comes a time where things do get better.  It is in those moments that we can stop, breath, and center.  I feel like I am close to that space.  I can see the light at the end of the tunnel.  We still have a long way to go.  But I feel like I can finally start finding myself again.  (Maybe those of you who know me can remind me who I am!  hahaha!)

I wrote the above and had to stop to come back to it later.  I had this dream lastnight.  I was supposed to sing at a contest, but everything was going wrong.  I couldn’t find the clothes I wanted to wear.  I couldn’t remember the song.  I couldn’t find a ride to get there.  Nathan was with me helping me, though.  I woke up immediately knowing that this is how I feel in life right now.

Anyway, does anyone else feel like this?  Or is it just me?  What have you put off in life either out of necessity, or fear, or procrastination, or whatever?

Rating Therapies

I’m often asked what therapies we have done and what I thought about them.  So I thought I’d just list them on here and let you all know.

Listening Therapy – C  30 minutes/day twice per day for one month.  It cost almost $300.  Bulky earphones combined w/a dangling wire was enough to set Autumn in to sensory overload.  But once she got the music going, she would usually settle down.  Overall, I’m not sure it really did anything.

Interactive Metronome - B+ One hour/day, 4 days/week for 5 weeks.  In the beginning Autumn found IM extremely boring and resisted going to therapy.  We had to come up w/incentives.  We decided to give her a penny for each time she got a green.  That ended up being about $2/session!  Anyway, we really did notice a difference w/each session.  Foods were not bothering her as much, her clothes weren’t as bothersome, and her attitude was just much better.  Cost:  Let’s just say I’m glad insurance covered it!

Brushing Therapy - B  Every 2 hours for 2 weeks straight.  Autumn LOVES to be brushed.  Her whole body melts whenever we do it.  Just that alone tells me that she probably needs it.  I notice she does better emotionally when we are consistent.  However, consistency is the main problem!  Cost:  Just a few dollars for the brushes and an OT visit to learn the procedure.

N.A.E.T. – A  This is obviously the most controversial therapy.  It combines muscle testing w/accupressure.  We wouldn’t have even considered this, but Autumn’s OT had great success w/her own son and suggested it to us.  I kept saying, “I’m doing it b/c I’m desparate, but I’m highly cynical.”  Anyway, 7 treatments later and Autumn has gained almost 10 pounds.  She is looking so much healthier and is actually drinking regular milk and likes it!  Cost: $65/treatment.  And no, insurance doesn’t cover it.

Of course these are our experiences and everyone is different.

It’s a miracle, I tell you!

Autumn has long, beautiful, thick, curly hair.  As with most kids with sensory issues, she hates having it brushed or cut.  She also likes to wear it in a slicked back ponytail.  Combing it out is probably one of the worst parts of both of our days.  Finally, I decided to google how to get a knot out.  I found out that if you use a normal anti-frizz serum, the knot should come out relatively easily.  So we gave it a try.  And guess what?  For the first time in years, we were able to get the knots out of Autumn’s hair in just a few minutes as opposed to 30!  Hallelujah!

Grrrrr!!!

Sometimes I get so tired of fighting for what is best for my daughter.  Sometimes I have to say, “You know what?  This is not a fight worth taking on.  I’d rather have peace in my life.”

We were a part of a homeschool co-op.  That is until a couple of minutes ago.  I was a little leary of this group to begin with, but decided to give it a try because I knew it would be good for Autumn to get some social time in.  It only met every Friday morning.  I did everything I could to make it known that Autumn has SPD, including telling various leaders, and filling out the appropriate information.

The first Friday we ran into problems.  First, Autumn can only tolerate Crocs.  This was an issue because it is a rule that the kids have to wear tennis shoes in gym class.  I searched in vain for a leader.  This group is confusing to say the least and not much is done to help a newbie.  So I decided to go to the gym class in order to observe and be there if Autumn needed me.  I got there and she was barefoot, which didn’t seem to be a problem.  However, the “teacher” split the kids into two different groups; those who wore white shirts that were given to them, and those who wore their own clothes.  I immediately tuned into the situation.  As she went down the row saying, “Shirt, no shirt”  I could see Autumn’s anxiety grow.  I didn’t intervene.  I usually sit back and try to give Autumn the chance to tackle a difficult sensory issue herself.  She got to Autumn, “Shirt.”  Autumn’s face sunk.  She grabbed the shirt obediently and started to walk away as tears welled up in her eyes.  She paced for a couple of seconds not sure what to do.  She went back to the “teacher” and said, “I really can’t wear this shirt.  Can I be on the other team?”  The “teacher” said, in a rude tone, “No.  Put the shirt on and go to your group.  Now.”  At this point, I intervened.  I walked over to the teacher with a smile and said, “I’ve made it known that Autumn has SPD with severe tactile defensiveness.  She is having a problem with the shirt you have given her.  Can she please just trade sides?”  With a look of disapproval, the “teacher” conceded. 

Fast forward 3 weeks.  The co-op has a policy that if you miss 4 weeks in a row, you’re out.  Week 3, Kai was sick, so we couldn’t go.  Week 4, Autumn was sick, so we couldn’t go.  Week 5, guess what, Fall is here and Autumn really has to wear pants.  Getting her up and getting her clothes on her can take up to 2 hours.  Plus, no matter what time she goes to bed, if she wakes up earlier than 9am, she goes into sensory overload and it’s really hard to break her out of that.  The same “teacher” I had a problem with calls.  “We’ve noticed you’ve been missing the passed 3 weeks and just wanted to know if this is going to work out for you.”  I respond, “Well, here’s the deal.  As I’ve told you, Autumn has SPD and is having trouble transitioning into Fall clothes.  Getting there by 9:15 is really difficult due to her sensory issues.  Is there a way we could come around 10am instead?”  Teacher, “Well, that is NOT our policy.  If you come late, then everyone will think they can come late and then everything runs amuck.  So you should probably bow out and wait until next year.”

At this point I just want to yell at her.  Instead I took a deep breath and said, “You know what?  I think that is very discriminatory.  My daughter has a physical problem that is diagnosed and you are not willing to even try to work around it.  That gives me a really bad feeling.  So, no, we won’t be coming back…this year or ever.  Goodbye.”

At first I felt like maybe I had over-reacted.  And maybe I did.  But you know what?  I’m tired of dealing with people like this.  People who don’t want to extend a hand of compassion to my daughter because it might cause other parents to feel left out.  Well guess what?  My daughter is left out continually.  She cries because she is not able to eat the same food at the dinner table, because she is not able to wear clothes that are in style, because she is different and she knows it.  So I refuse to deal with people like that anymore.  If you show me that these are your colors, I’m not even wasting my time anymore.

By the way, Autumn is not hurting socially.  We have friends from her old school, her theater and dance class, and church.

I’m doing so much better!

I still have a hard time with eating.  But the clothes aren’t that bad.  I’ll wear just about any of my clothes because winter is coming up and it’s getting cold.  I’m homeschooling and that seems to be helping me.  It’s really fun.  And I just got a new dog and dogs really help me.  She cuddles me.  Her name is Addie.  She’s 4 years old.  I’m doing so much better! 

If you are a kid and you are having a hard time, you should try cuddling with a stuffed animal or a pet.  *Homeschooling could help too.  I used to have a really really hard time when I was in regular school.  But now that I’m homeschooling, I’m doing much better.  If you would like to talk to me, please leave me a message on this website.

(*Please remember, these opinions are Autumn’s and she is 7.  I am fully aware not everyone is able to homeschool and that it is not best for everyone).

I’m so behind the times

I just discovered Etsy.com.  I know, I’m a dork.  Oh well.  I definitely think it is something that could become very addicting, so I need to be careful!  I did find a couple of GREAT sensory-related products.

Tell me this guy isn’t the cutest little monkey you’ve ever seen!  Weighted animals are usually so expensive.  This is great for your little ones (or big ones) who crave input.

This seller also has a few other neat products.  Mueller Sensory Therapies  Check it out!

Never judge a book by it’s cover!

I have been searching for a new dog for our family for probably 7 or 8 months.  I’ve been scouring petfinder.com.  I’ve even poured over page after page of dogs listed on Craigslist.  And, honestly, I’ve even begged God to send the perfect dog our way.  I’ve been to the humane society probably 8 times.  Nathan is so sick of my obsession.  He kept saying, “Just GO GET a dog already!”  So, yesterday I packed the kids up in the car and trekked to the humane society once again.  I fully expected not to find anything.  We walked in and told the lady at the counter what we were looking for; medium sized, laid back, good w/kids, cats, and other dogs, etc.  She said, “I think Addie would be perfect.  Go wait in the waiting room and I’ll bring her to you.  So I waited, trying to keep Kai from eating the dog biscuits and crawling on the floor.  Finally, in walks this dog.  I laughed out loud.  I didn’t mean to, but I did.  She was little, about 30 pounds.  She had huge bat-like ears and a long dashund shaped body.  And she was smiling ear to ear.  I have always had big dogs like Huskies and German Shephards.  I’ve even owned a half Collie half St. Bernard.  That’s my schema when it comes to dogs.  I’d never even seen a Corgi before!

Anyway, Addie was very nervous, but excitedly so, not scared.  She was so gentle with the kids.  And within 10 minutes, we decided to take her home.  It’s amazing how well she fits with our family.  She follows Autumn all around and even sleeps in Autumn’s bed.  I can already tell a difference in Autumn’s behavior.  Life just doesn’t seem so hard.  Addie is pretty much the perfect dog.  She lets us know when she wants out, stays by our side when we walk, doesn’t bark unless someone knocks on the door.  I guess Corgis are known for putting their lives on the line for their owners.  So even though she is small, she packs a big bark.  And to think, I almost passed this one up.

My camera’s broken, but she looks almost exactly like this dog.

On our way home, we stopped at the Starbuck’s drive-thru.  The barista saw Addie and started laughing and brought over a friend so that he could laugh at her too.  But you know what?  That’s exactly what I need in my life right now – laughter.

A lot has changed

Isn’t it amazing how life can change in just a few months.  Let me start out by saying that Autumn is doing much better.  I have to remember the real reason I haven’t been on here much.  When you are in the middle of a sensory crisis, it literally rules your life.  No one would ever guess that, but it does.  I’m not talking about all of the OT appointments, doctor’s appointments, chiropractor appointments, and counseling appointments.  Nor the amount of time it took on the road to get to those appointments and back.  I’m not even talking about the time it takes to do therapies at home.  I am talking about the screaming and the time it takes to get my beautiful daughter calmed down.  I’m talking about having to be constantly aware of what could set her off.  I’m talking about finding the right clothes and the right foods, which many times is nearly impossible.

Back to the present.  Autumn still has her moments, but for the most part, I am happy with the progress we’ve made.  There are days when her clothes don’t even bother her.  She never complains about her pajamas.  She plays in gooey, sticky stuff and doesn’t freak out.  She even plays in sand sometime.

Unfortunately, Lewis, the dog, didn’t work out.  He had his own sensory issues!  hahaha.  He had a really hard time dealing with all of the chaos in our house.  So we had him groomed and took him back to the very reputable shelter where we got him.  They consider themselves a “no kill” shelter (even though there are truly no shelters that don’t euthanize once in a while).  We made them promise they would call us if Lewis didn’t seem like he was going to be adopted.  Fortunately, he was adopted in 4 days!  I’m really hoping he is with a wonderful family.  He was really a sweet dog.  So our doggie search continues.

The other big change is that we moved.  This was a major surprise to all of us.  However, we found a great house in a great neighborhood.  I was afraid of how Autumn and Kai would adjust, but they are both doing wonderfully.  This house is honestly a much better fit for us.  It is a ranch and that really helps when I have to run to deal with a situation.  I can pretty much see/hear the kids from every room.

Another change is that we’ve decided to homeschool.  I can tell you that I definitely don’t think Autumn could handle school right now.  Getting up early, even if she’s had a more than adequate night’s sleep, really puts her into what I call sensory overload.  Anyway, we get up around 9:30 and that seems to be helping her.  The other thing that is great about homeschooling for us is that I can tailor the program for Autumn’s specific needs.  I’ll talk about that more in another post, though.  Kai seems to enjoy it too.

We still have our bad days…like today, unfortunately.  But for the most part, all of the hard work and dedication is paying off.

Obviously people need to know

I had pretty much given up blogging here.  I thought maybe what I had to say, or my experiences, were not really useful to many.  Then something horribly disturbing happened to me today.  I had to go grocery shopping. Autumn is having a very hard time adjusting to having to wear fall clothes. I’m lucky she’s wearing anything at all considering 6 months ago, she couldn’t tolerate any clothes period. BUT after 4 months of OT twice/week, 1 month of OT 4 times/week, a brushing routine, listening therapy, allergy elimination therapy, thousands of dollars, and thousands of miles spent in the car, she can FINALLY wear shorts, a t-shirt, crocs, and even a fleece jacket.

It is 56 degrees here today. We went to the store, and the above is what dd wore. She was running around and got hot in the store, so she took off her jacket. She is just getting over a cold, so she’s coughing here and there. I walked by a lady, and under her breath she said, “I would never let my child wear that in this weather.” I knew she was talking about us, but I chose to just walk on. Granted, my son is in a sweatshirt, long pants, and tennis shoes.

I had to go back to get something near her vicinity. Again, she mumbled under her breath something about the way dd was dressed. This time I couldn’t contain myself. I said, “Excuse me, but my dd has a medical condition called Sensory Processing disorder that makes it difficult to tolerate clothing. You should research it before you go judging someone.” To which she responded, “My daughter has that too and I would NEVER let her out wearing that in this weather. You are a freaking child abuser. And you wonder why she is coughing.” I said she was lying about her daughter and told her that she was incredibly judgemental.

The thing that sucks is that I know that’s what people think of me. I’ve never wanted to hit a person so badly in my life.

But you know what I realize?  It is quite obvious that I am NOT a child abuser.  This woman, however, is an incredibly judgemental and angry woman.  I feel nothing but sorry for her.  I would hate to live my life with such awful feelings.

So, when you see a kid who seems inappropriately dressed for the weather, please consider that you may not know the whole story.  Much like most things in life, I have learned that I really have a lot to learn.  As the saying goes, until you walk a mile in my shoes, keep your judgement to yourself.