Good Parent Advocates

Do you want to become a good advocate for your child with special needs?  Are you wondering what that looks like?

For parent advocates, there are three 3 thoughts to live by:

· No one loves your child like you do

· No one knows your child better than you do

· No one has better intentions for your child than you do

 

 Here are some descriptions of good parent advocates:

· They are, or are working towards becoming an expert in their child's disability

· They know that, because of their child's disability they and their child have certain rights

· They buy books on their child's disability and read about the disability late into the night

· They troll the internet looking for new strategies, techniques, or educational programs that can be used with their child

· They are positive, collaborative and willing to try anything the school suggests

· They communicate often and effectively with their child's school

· They are not intimidated by school personnel

· They seek out private assistance for their child when needed, whether it be speech, tutoring, occupational therapy, or whatever is needed

· They understand that learning does not end when the school bell rings at the end of the school day

· They are persistent

· They prepare for meetings and keep good, organized records

· They insist their child's progress is tracked and monitored using objective quantitative data, not opinions or feelings

· When their child is not making progress, they ask what else can be done

· They are positive and strong and hold people accountable, including themselves

· They seek out other parents like themselves

· They think about and plan for a hopeful future for their child

· They believe they can change the world

Look At Me

    

  My daughter, Brooke has beautiful eye contact and I don't take one second of it for granted. I took this picture of her at the Texas State Fair last year.  I love her big blue piercing eyes and for a mother, there is nothing more fulfilling than looking into the eyes of one of her children and sharing the closeness that comes from that.  But in the autism community, eye contact, or lack thereof, can be a big issue. 
     A lack of appropriate eye contact was the first red flag I saw in Brooke's development.  When she was just six months old,  I became very alarmed about her lack of eye contact.  I would hold her and talk sweetly to her and  try desperately to make eye contact with her.  She liked it when I spoke to or sang to her. She would smile and her entire face would light up,  but she would look sharply to the left or right avoiding a direct gaze with my eyes, as if it was painful. It hurt my feelings so bad. Sarah, my first born child, had allowed me to cuddle her and feed her as we stared into each others eyes, and that feeling had been magical.  It was like we were the only two people on Earth, and in those moments, to me, we were.  I wanted that desperately with Brooke.  I would try to reposition her body to gain the eye contact I craved, but it was quite a challenge as she would squirm to look elsewhere. When I did get any eye contact, it would be fleeting. 

I remember back then, going to the Internet and typing "poor eye contact" into a Google search.  EVERYTHING that came up was about autism.  I went numb with the thought that my beautiful baby could be autistic.  I remember one night in particular, after spending too much time reading on the Internet, going upstairs to her little pink nursery and getting down on my knees beside her crib.  She was ten months old at the time and by now, even without a formal diagnosis, the signs were all there and my suspicions could not be calmed.  I was shaken to my core with fear. As I kneeled there, engulfed in the beauty of her sleeping perfection, I was hoping against hope that it was not to be. I grabbed onto the white wooden spindles of her crib, so tightly that my hands began to perspire, and with one spindle in each hand I began to pray, no beg God, by the moonlight, that she would be okay, that she would be "normal," that He would not let it be my baby who had autism.  "No God, no, please," I begged.  "I can't do this. Give this to someone else, some other baby, somewhere else, someone who doesn't care about their baby,  but not mine, not our family...please God, please, no........." 

But God sees the beginning, the middle, and end and now,  nine years later, knowing what I know,  having experienced what I have experienced, and learning what I have learned, I am a better person for having Brooke and she had made me the person I was meant to be.  I don't know how or why God chose me to have Brooke, but I once read a poem by Erma Bomback that has brought great peace to me.  Here it is:



 

God Chooses Mom for Disabled Child 

 

Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.


"Armstrong, Beth; son; patron saint, Matthew.

 

"Forrest, Marjorie; daughter; patron saint, Cecelia.

 

"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity.

 

" Finally, he passes a name to an angel and smiles, "Give her a handicapped child." 

 

The angel is curious. "Why this one, God? She's so happy."

 

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel." 

 

"But has she patience?" asks the angel. 

 

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." 

 

"I watched her today. She has that feeling of self and independence. She'll have to teach the child to live in her world and that's not going to be easy." 

 

"But, Lord, I don't think she even believes in you." 

 

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" 

 

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." "I will permit her to see clearly the things I see---ignorance, cruelty, prejudice--- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." 

 

"And what about her patron saint?" asks the angel, his pen poised in midair.

 

God smiles.  "A mirror will suffice." 

     Now, I am clearly no saint, but I am different from most mothers. I see the world in only the way the mother of a child with a disability does. That is just too hard to explain in a simple blog so I will save it for a more complicated one later.




   How did I get Brooke to go from "fleeting" eye contact to typical eye contact?  Let me tell you, it took a lot of work, patience and creativity but it was a skill she had to learn and she did learn. 
Here are some of the strategies I used:




1.  I would sit with Brooke in a quiet environment.  There were no toys or other things to steal her attention away and I would just sit and look at her.  I would follow her with my eyes around the room and each time she even intermittently looked at my eye, I would praise her very loudly by saying, "Good eyes!" or "Good Looking!"  I would completely over exaggerate my praise and she enjoyed the animation she saw when she looked.  If you have a child who makes little to no eye contact, I would suggesting setting up an environment where you put the child right in front of you and have a highly desirable item the child likes, for example M&M candies.  Each time the child makes eye contact, offer big boisterous praise and give an M&M. It won't take long and the child will learn how to earn the piece of candy. As time progresses, you can withhold the candy, or whatever the reinforcer is, for a period of a few seconds.  As you continue with  this, begin to communicate  and create intimacy with your eyes to the child's eyes, as the child can tolerate it. Look into the child's eyes and smile, or raise your eyebrows up and down and smile while you do it.


2.  Whenever I wanted to speak directly to Brooke, I got down on my knees right in front of her face, closely,  and I tipped her chin up so she would be looking at my face, then I would say whatever it was I wanted to say to her.  Often, she would still be looking sharply to the left and right initially,  but at least she was looking in the vicinity of my eyes. 


This is a picture of my husband trying to chin tip Brooke for a picture when we were working with her on this skill.  You can see how she had difficulty looking at us, even for a picture:

3.  When Brooke asked for juice or something else, (I was thrilled she was requesting!!!) I would hold the object up to my eyes so I would have a better opportunity to catch her glance before giving it to her.  When she looked at my eyes, I would say, "Good looking," or "Good eyes." 


4.  Before I spoke to Brooke, I often prefaced my statements with, "Look at me....." with and without  chin tipping. Here is a video of it in action.  Brooke was 4 years 8 months old.

(Granted we were still working on other things here, like just answering to her name!  Also pronoun reversals were an issue, she was scared to death of the water, she used echolalia, and she had no conversations skills.  I would have never imagined back then,  that 4.5 years after this video was made, all of these issues would be resolved!)

5.  I also used to make a game out of it.  I got a  silly pair of eye glasses and told Brooke that whenever I had the glasses on, I wanted her to focus on looking at my face/eyes when I spoke to her.   I started with only using the glasses for a  short period of time, and as I noticed her eye contact improving, I wore them for extended periods of time.  I had a few different pairs of silly glasses, and on some days, the whole family would wear them at dinner or other periods of the day.  We all knew what they meant.   Here is an example of some silly glasses I got at a local party store. 

6.  As Brooke got a little older,  we reinforced to Brooke, the importance of eye contact and how it lets other people know you are listening to them.  Even if the child just does an eye "check in,"  it shows respect, interest, and appreciation and it can help a child to build a new friendship. 


I knew we had passed the hump, when she began tipping our chins and telling us to "Look at me," whenever she had something to say.

Eventually, we were able to fade out all these strategies as Brooke's eye contact improved and improved and improved and became, well, typical, like this.....

I'm Starving to Death!

     Did you ever have one of those days where you had the best of intentions about getting things accomplished but only achieved 5% of what you actually planned to do?   I think that is a good description of my entire life lately.    
     This morning I had appointments with five clients, two of whom, cancelled.  I understand that things happen sometimes, but honestly,  I hate cancellations.  I do a lot of preparation not only for the family or child with whom I am going to work,  but I also have to find daycare for my own children.   That in itself used to be a nightmare, but since my mother retired it has thankfully become much less of a challenge. Yes, my mom is  more than willing to watch my kids for me, as long as I agree to be at her beck and call with say, the random, spare of the moment , mattress flipping or attending the ladies church group social with her. I'm all in. 
    "Grammy," as the kids refer to her, is the best babysitter.  She is loving, giving, accepting, and supportive.  Oh, and she has a pool in her backyard so that makes it an even better place to be in July.  Grammy has a special and different relationship with both the girls. Sarah and Grammy enjoy long talks about family and life, and Sarah thoroughly loves the physical stroking Grammy is happy to sit and give for hours.  Grammy finds Brooke's antics entertaining,  and marvels at the progress she has seen her make in the last few years. Grammy  remembers vividly a few years ago when Brooke was a screaming child who would have little to do with her.  Now she sees  a child who is sassy and confident, even when she shouldn't be, and who is becoming more and more independent each day. There is much to be thankful for.  We are most thankful for God's grace and early intervention.
     Some things about the girls are the same, and that is nice too.  Both girls can swim like fish and if they had their way during the summer, their days would be spent in the water.   This is how I found them when I arrived at my mother’s house today:

Still not fully recovered from her pneumonia, Sarah was relaxing in the sun with her 110 SPF sunscreen, while Brooke was on the pool saddle.

     The pool saddle is something Grammy got  at Academy Sports store and my kids love it.  It requires some balancing and is great for vestibular input for children with sensory processing difficulties.   It is sort of weird looking though, right?

                                                          

     Even weirder looking than the pool saddle was how I found my mom when I arrived, who has her own unique style of babysitting.....

     After catching Grammy in the act and rousing her (she said she was just resting her eyes),  Brooke yelled out from the pool, "I'm starving to death!"  Now most mothers would probably consider rushing back inside to the kitchen to fix a peanut butter and jelly sandwich for their little one, but not me.  Why?  Because it was shortly after lunch time, and because Brooke is ALWAYS starving to death.  It is a common expression in her vocabulary.  One time,  I decided to sit down with her and actually show her pictures of children who truly were starving to death in an attempt to quel this statement from her, but sadly it had no impact.  Because the children in the pictures had distended stomachs, Brooke insisted they WERE NOT starving. I gave up. 

     Yes, Brooke's meals are very important to her and she has made her own meal time schedule which must be strictly adhered to,  including the meal time she made up called linner (between lunch and dinner).  Anytime she is off schedule,  she will inform you she is  STARVING TO DEATH. 

This is Brooke preparing one of her own linners.  Hey, life skills are important. 

  



   This time, I ignored her comment and rushed the kids out of the pool so I could bring them with me to run some errands before a late afternoon dentist appointment.  I needed to go to the mall to pick up a couple gifts which I am overdue in giving, and I figured the girls would enjoy tagging along. 

I had them towel off, throw their clothes on and hop in the car with me.  The car ride getting to  the mall ended up taking twice as long as it usually does, because the road construction was horrible on the way there and the exit I normally take was closed.  I was sent on a lovely long detour where I passed this sign:

When I saw it  I couldn't help but wonder why  I am buying so much bottled water if our water is so SUPERIOR. 

     Finally, we arrived at the mall and hunted forever to find a spot to park without having to walk a mile.  When we found one and Brooke saw we had parked near the food court, we were finished.  Again, she let us know, she was starving to death. Sarah rolled her eyes and we looked at each other and laughed.  By this time, I too was a bit hungry for lunch, so we all enjoyed a quick meal.  I couldn't help but to people watch a little bit while we ate and I noticed this nice dad sitting next to me:

At first glance, it was just a typical dad having lunch with his family, but my, how times have changed.  My dad NEVER wore a backpack to the mall,  did yours?

After eating, we headed to pick up those gifts, until......  I saw the massage chairs in the middle of the mall.  What could it hurt, a quick mini massage, I thought. Twelve bucks for a fifteen minute chair massage seemed hard to beat.  Yes! I quickly handed over the technological babysitter (iphone) to the kids, told them to stay next to me,  and I  climbed onto that massage chair, hoping I was hopping onto a little bit of summer heaven.  Instead,  I got the most vigorous massage a human could possibly receive,  in fact it was so hard I wanted to scream out, "OH MY GODDDDDD, THIS MAN IS KILLING ME!"

Sarah snapped this picture of me during the pain session.

 You can totally see the pain on my face, and I swear, my nose is not this big.  I think it was swollen from the guy pushing it into the head rest so hard.   

  I kept thinking it would get better, but it never did.  Another example of you pay for what you get. 

After the massage, I started moving slower and slower.   I was too sore to shop and I ended up leaving the mall without getting either of the gifts I needed!   My back literally felt bruised!

As we headed towards home,  in addition to the construction, the afternoon Fort Worth traffic had started, and we mostly just sat or went 10 miles per hour,  making me way too late for my dentist appointment, which I had to reschedule. 

What should have been a 15 minute trip home, ended up taking nearly an hour.  And by this time, I was now having back spasms!!!  Sarah, realizing I was sincerely in pain, sweetly helped me into the house.  Brooke came in the house, threw her purse down, let the dog out, came back in, closed the back door way too hard and yelled out, "I'M STARVING TO DEATH!"

Yard Sale Intimidation

  There are only a few things in this world I like better than a good yard sale and I'm not kidding you.  I could be on my way to work, headed to an important appointment,  or maybe even rushing someone to the hospital to get stitches in their head, and I firmly believe I would brake for a yard sale sign. Today was no different.    I was on my way to church when what did I see but a newly planted yard sale sign that made me brake so hard the kids flew forward and  the seatbelts nearly put indentations in their little shoulders!  My heart started racing with anticipation and I said, "Ooh look, there's a yard sale sign," while I made the sharp right to get there and the kids looked for something to grab on to to stay in their seats.  Brooke immediately yelled out, "UUUUUugggghhhh!!!," and followed that up by saying that yard sales were tacky.  It was then, that another priceless piece of blissfully presented and impolitely ignored motherly advice fell from my lips. I said, "Now Brooke, you'd be sorry if we didn't go to this yard sale and there was something there that you really wanted."  She looked me square in face and replied firmly, "I don't appreciate you trying to IN-TIME-UH-DATE me."    I scrunched down my eyebrows tightly as I tried to figure out what she was saying and then I thought to myself, did she mean intimidate?  Was she accusing me of intimidation, OVER A YARD SALE? How in the world does she even know what intimidation is?  "What are you talking about?"  I snipped back. And that was when she said and I quote, "You know, when a person threatens you to try to get power, like when a person says, do as I say or you'll be sorry." (WHERE DOES SHE GET THIS STUFF???)   I thought this conversation was going to need some more discussion and context  for sure, but  I put the talking on hold in my brain for a minute as I quickly popped the car in park and jumped out to check out what treasures I might find in this stranger's front yard.  I mean, anybody who truly understands yard sales knows the early bird gets the worm and prolonging your visit by a mere 30 seconds can make the difference between getting something really good or watching some other person walk down the driveway with it while you leave wondering how much they paid FOR THAT!!! 

Brooke and Sarah spied a few big cardboard boxes and followed right behind me, I suspect falsely continuing to  fantasize about finding some cast off American Girl dolls (yeah right). 

Unfortunately, nothing caught my eye at this place so I was quickly back in the car and on my way to Sunday school, hoping maybe I would see another yard sale sign and also hoping I would not in-time-uh-date anyone else along the way.  Brooke snatched my phone from the console, snapped a picture of herself and informed me that this was her, Someone has tried to intimidate me face:



 Whatever.....I didn't even really mention it again, except to say, "Mommy would never try to intimidate you, Brooke." 

Now, I know that with a kid on the autism spectrum, every moment should be teachable, and for the most part we have made every moment teachable for Brooke, much to my own exhaustion.  But, over the years, reality has set in, and to be honest, on this Sunday morning, I just wasn't up to the challenge.   We work with Brooke a lot on her social skills and sometimes things don't get generalized quite appropriately, case in point.  

Now back to my yard sale obsession-  

My mother loves a yard sale as good as me, but she hates it when I tell people that some of the stuff in my house came from a yard sale, (as you can see I just can't help myself) like this coffee table -

It has a removable glass top and was in pristine condition!  I bought it from a family with a toddler.  Anybody who has a toddler knows the coffee table has got to go, so I picked it up for a cool $25.

This credenza came from a yard sale and is in my foyer:
I got it for $40.

And the painting above it was a yard sale find for $25 

     Of course there are some things I would NEVER buy at a yard sale, like a mattress or a sofa or anything else that could possibly have reproductive bodily fluids on it, and I will just leave it at that.

 I could go on and on here about my yard sale finds over the years,  but out of respect to my mother, I won't.   Well,........except for just one more of my most special purchases.  I was at a community sale  where I bought this antique set of Haviland dishes (service for 12), still in the boxes, for $50.  When I looked up the value, they were worth over $3,000! 

 

I Love Them!

What about you?  Do you just drive right on by or do you give in to the temptation to brake for yard sales too?  And if you're like me and have to stop,  here's hoping you find something spectactular!
 

Howdy Partners!

They say everything is bigger in Texas and I am finding that to be true about a lot of things, especially the summer party we went to today! We were lucky enough to be invited on over to Perry and Kelly's annual shindig again this year, and let me tell you, it did not disappoint!   From great friends, great conversation, and great  food, to bucking broncos, lasso competitions, water slides, and bounce houses. Perry and Kelly sure know how to do it up at their place,

WESTERN STYLE.

   

               
       This is the front of their house.  I love their covered wagon. they actually have several of these old wagons on their property.  There sure is something to be said for moving out in the country...........SPACE!


          
Check out the fabulous building they put up in the back of their house. Every time I see it, it gets better and better and now there is just no other word to describe it other than amazing! The mural on it is a gorgeous western scene and the inside has been converted into a real life saloon! 


  Okay, so maybe this part of the party wasn't exactly western, but it was a cool way to cater a party and to bring in a little bit of Perry's roots, since he is actually from across the pond.  Whatever you wanted, you just walked up to the bus window and they handed it out to you! I wanted to go inside that bus and walk up the stairs so bad!

Sarah gave the bucking bronco a try.......for a whole two seconds when she was thrown into the air. After Brooke saw that, she wasn't going anywhere near that thing.

Here are some pictures from inside the saloon. It is so creative and everybody completely got into the fun!

Yeah, cowboy hats were a staple item at this party and the band rocked it out.

Even Roy Rogers made an appearance!

It was a fun and exhausting time for everyone where we all giddied up till we were ready to drop.  Thank heavens, the two little cow gals are now snug in their beds and the pillow is calling this Madame's name.  

It's More Than Please and Thank You

      With girls who have autism spectrum disorders, we almost always see academic difficulties.  As we work to catch them up with their peers, academically, it can be easy to forget the importance of developing age appropriate social skills too.  I recently discovered  two American Girl books which I think are definitely worth mentioning.       

For girls  ages 8 and up, with ADHD. SCD or who are on the higher functioning end of the autism spectrum, and with fewer academic  reading difficulties, both books are nice reads. For those who struggle with reading, these are books that can be shared from parent to daughter or used to supplement a girl’s social skills group.

Inside each book, you'll find great  colored pages covering social thinking activities, role-playing,  modeling via scenarios, what not to do, how to apologize, dealing with your differences, how to avoid hurting other people's feelings, how to keep yourself from being taken  advantage of, how to compromise, deal with betrayal, jealousy and so much more. A good purchase which I highly recommend. While AG is not marketing these products specifically to girls with ASD, ADHD,  or Social  Communication Disorder, American Girl is becoming increasingly more sensitive to girls who are different. An example of their committment to acceptance and understanding is this new line of dolls they have just debuted, which are without hair.  So now, girls affected by cancer, alopecia or any other medical condition that causes hair loss can too have a "My American Girl" doll which is truly a reflection of themselves.  Just another reason why American Girl gets my business.

 Kudos to American Girl.   

Tacky, Tacky, Tacky



 My Living Room

  Most of the time, my house stays as neat as a pin.  I like it that way. It is relaxing for me to leave and come home to a clean and organized home.  But, I have to be honest here, when it comes to my purse, I am embarrassed to admit, I am a bit of a hoarder, plain and simple.  I truly don't know how so much stuff creeps into my purse and on most days I don't even notice it.  It's not until after extended periods of time when I try to cram something new in that I realize it is again at its brink and can’t hold another thing. It happens a few times a year and today was one of those days. I was on my way out the door to run some errands in a different vehicle than I usually use. I had just come back in the house from the driveway where I had started the van we'd be taking (when you leave your vehicle in the driveway in Texas, it totally has to be cooled off before you can get in it).  I went back in the house  to grab my list of stuff to do and to put my phone car charger in my purse,  but it was hopeless. My purse was overflowing with a wild array of  …..items.   In an effort to get out the door quickly to run my errands, I opted for a quick, short term remedy, and I took out a few big handfuls of the random items and put them on my washing machine with the intention of sorting through the pile when I got back home. But before I left, I stood there a moment staring at my shortcomings with embarrassment, pleased that my mother wasn't there to shake her head at me in shame.

There was a fork, a knife,an old telephone bill, 3D glasses from a movie we saw last week, lotions with no tops on them, rubber bands for my kid's braces, an old People magazine I have every intention of reading, receipts, paint samples, and Lord knows what else. I was still standing there staring at the mess wondering why my purse always looks like this,  when Sarah frantically came running back in the front door telling me she had accidently locked the van, while it was running and I immediately remembered…………….I..........don't..........have.............a................spare.......key...............!!!

After I was sure I had heard her correctly, I looked at her and said,

YOU DID WHAT???????!!!!!!!!!!!!!!

Brooke, sensing my distress looked at Sarah square in the face and exclaimed,  "That was so tacky, Sarah!"  Tacky is Brooke's new word.  Because her latest obsession is DISNEY IMAGINEERING, she has become  a walking app regarding the history of both Disneyland and Disney World.   Evidently Walt Disney did not like the "tacky" hotel and advertising signs directly outside of the Disneyland gates and that was partly his motivation to purchase the land in Florida which later became Disney World. (I learned this from Brooke) For some unknown reason, Brooke has latched onto that word and is readily identifying anything she finds unpleasing with it. 

    Anyway and luckily, disaster was averted when I remembered my stepdad has a spare key.  I called him at work and the girls and I drove the whole 2 minutes from my house to his job and look what we picked up-

In just a few minutes we were back home and then leaving again in a VERY COOLED OFF van!



Brooke said I was 'tacky" because I take too many pictures and because I always say to say cheeeeeese.

I headed to downtown Fort Worth because I need to have some work done on the van and I had gotten a good recommendation for a body shop there that would give me a fair estimate.  We took several little twists and turns down little streets through the outskirts of Fort Worth.  The landscaping was beginning to look more and more like a small barrio of a foreign country (where  Brooke described  every other building as tacky)  when we stumbled upon this gem just down the street from the body shop-  

Yes, it was a house completely decorated in beer cans.  I bet their neighbors love them.

I had to get out and get a better view of this one.

Sarah thought it looked beautiful but Brooke stayed in the van and told us it was tacky, of course. 

After our visit to the body shop, the girls and I celebrated another hot day of summer with a stop on the way home at one of my favorite places ......

There is nothing like a Reese's Blizzard.