Layers of my battle field

My battle has layers. The outward battle is what everyone sees. Sadie's struggle. Taking her to all the various treatments and therapies and then making sure to implement that in our daily life. Scheduling and driving to countless doctors appointments and watching my little girl get cut, pricked and zapped over and over to try and find an answer. I have to make sure her needs are met and that she can function physically and mentally day to day to her full potential. This is what everyone sees and says "wow how do you do it?" Well it's all I know. I have been doing this since Sadie was 12 months old. I was herded into the Autism awareness uprising and have found myself here.  You would do it too, without a thought if it was your kiddo. This my friends is the easy part.


Underneath that struggle of trying to find Sadies "real diagnosis" and keeping up on her regimen is the struggle to make sure that everyone else is doing the same. Last Thursday as I was driving to our Orthopedic doctors appointment in San Diego. I gave myself a major pep talk on how I need to get this doctor on my team. He is supposedly the best in Southern California. He did Sadie's surgery and we have been seeing him for a couple years now. He's just so dismissive and he focuses on one problem and then pats himself on the back for temporarily fixing it. If he was looking at the full picture he really should have been the one to figure out that Sadie had a myopathy and maybe not cerebral palsy. "This will get his attention" I thought. "Now he will listen to me." And then in my head I wrestled him onto the ground, put him in a head lock and made him answer all my questions satisfactorily and apologize for not ever listening to my ever so wise physical therapist and denying all those leg brace requests! AH  if only I was one of those people who could act in the moment (minus the wrestling).  In that appointment I showed him how tight Sadies surgery foot and leg had gotten. I then mentioned how unhelpful it was when he wouldn't approve the full night leg brace right after the surgery (I had to go through another doctor to finally get it!).  He said "orthodics just make muscles weaker" This is when I should have said "Hi have you met my daughter before, please throw out all knowledge of what works and what doesn't because she defies all logic (including your cerebral palsy diagnosis). PLEASE TAKE NOTE: SHE IS NOT A NORMAL CASE!!!!" I didn't say that, he just, with all his might pushed Sadie's foot in the neutral position and said "see the surgery worked!" He might as well have said "TA DAAA!" at the end to help his forced enthusiasm. I hate that when I get angry, I get teary. Damn you emotions (sorry). I held it back and squeaked out "but she can't straighten her knee". He suggested Botox AGAIN. I said "botox stopped working, that's why we did the surgery and why would we do botox when we don't know what myothapy she has?" He responded with a "Well then I guess we will just have to wait and see won't we?" and then he STOOD UP! I hate the standing up! Really?! Its only been 5 minutes! It's so dismissive as to look down on you and say "were done here."
"Wait!" I said holding up my iPhone and pointing to my notes. "I have more questions!" He slunk back onto that little rose colored stool and answered me shortly with "wait and sees" and "I don't have answers for you" and "no I don't think Sadie should have altraflex leg braces to wear during the day" It was over. I was flustered. As an act of defiance I didn't even check out. Ok so I knew that he wasn't going to have "the answer". Please know that I don't swear off doctors that don't have the magic cure. I swear off doctors who refuse to look for one, or at least refuse to actively help my cause. In my family when someone is overly tired, over it, or so very done- we call them DONE-ZO. This doctor is DONEZO!


Making sure everyone does there job is stressful. There is always a test to follow up on. Referrals I sometimes have to plea for. There's Orthodics and equipment I have to insist on and then I have to make sure every party received the prescription. I have to call on a regular basis to try to get an earlier appointment somewhere. At school I have to make sure everyone is doing what there supposed to be doing for Sadie. It's important for me to take the time to be a Class Mommy/ Secret Spy to make sure all is well and good and that her IEP is being followed. My theory is that not every one cares about my kiddo as much as I do so I need to be the driving force to spur those individuals into action.  I get frustrated because I am not a doctor and I don't know what I'm looking for so for now I'm just the mom who has to figure out how to get them to do there jobs.


After that underlying battle is yet another layer. It's the " how the heck are we going to pay for this?" struggle. My husband has a steady job with an average income. I stay at home and do occasional hair on the side for extra money. In any other situation we would be fine and dandy but add a special needs child into the mix and your expenses sky rocket. I am constantly battling insurance, filling out applications for state programs and applying for any funding for therapies I can find. In this battle I get easily overwhelmed. Really I need a little office with like ten cubicles and computers. And in each cubicle is an assistant to wait on hold and search out programs and fill in Sadie's birthdate and medical condition for the millionth time. This battle is why I'm addicted to Red Bull.


Then underneath it all is my emotional battle. I seem to ignore this one as often as I can. Tending to the other struggles in order to ignore it. I ask myself, "Am I doing enough for Sadie?", "How is this effecting Bro?" When Sadie was diagnosed with Autism I was devastated but she has overcome so much of it. When she got the diagnosis of Cerebral Palsy, I was sad but I thought we had an answer. We were told that the good news about Cerebral Palsy is that Sadie won't get worse, she can only get better. I was ok with that. I was determined to get her walking. She WAS going to get better. But she didn't. Somedays she was worse and some days were better. We knew we didn't have the "right" answer. Now that I've fought so hard to find it I feel like I just don't know if I want to hear what it really is. A myopathy isn't good news. It usually means things will just get worse. I'm not ready to hear that. I'm not ready to take that in and feel it yet. 


The easy part is helping Sadie day to day. The hard part is behind the curtains. I'm pretty sure that this is never ending. It's going to be our life. It is our life and I'm okay with that. In high school I was on the Varsity wrestling team all four years (ya I know, maybe I'll tell ya all about it someday). Anyways we had to do sprints every practice after being dead tired. I never wanted to show weakness in front of my male teammates and so I put on my determined face and somehow got a second wind to push through those sprints. When I'm getting tired and bogged down I can vividly remember that rush of powering through and sprinting back and forth across the wrestling mat or on the muddy field. You just put on a smile and push through it knowing your stronger for it at the end of the day. 

New leg brace

Beebsism: Sadie has always had to wear her leg braces at night and she has grown to tolerate them pretty well. Her left leg and foot are still getting really tight despite her recent heal cord surgery. So we had to have a KAFO made. It's a brace that she will have to wear at night and it goes all the way up her leg to keep her knee straight. This one is also supposed to flex her foot up as she relaxes. 

What we do: Bribery usually works for Sadie. Since she picked dalmatians to adorn her leg brace I surprised her with Ember Flicker Flame. Sadie collects these Lalaloopsy dolls and was so excited that Ember had a Dalmatian just like on her braces!

We made a chart and the deal was that she had to wear her brace 3 nights in a row and then she would get Ember and her puppy. This has been super hard! For me and her! I have been putting the brace on her an hour before bed time but by the time midnight rolls around there is major whining and crying. (PT stop reading here) I have been giving in and taking it off! I figure 5 hours a night is a good stretch and we will keep working our way up. Oh and yes I gave in to the doll too after 3 -5 hour nights. I can't keep that girl from her Lalaloopsys! 

The Cute Little Handicap Bathroom

Making the bathroom more accessible for Sadie was a great excuse for a fun little remodel. I knew Sadie wasn’t going to be independent over night but I wanted to give her the opportunity to be able to practice her basic daily living skills.  Sadie’s strength is never consistent, she has ups and downs depending on the day. On her “good” days I wanted her to feel safe and confident as she tries to accomplish these everyday tasks. Upon redesigning this bathroom here are the things I needed to keep in mind:

• Sadie needed to get in and out with her walker
• she needed a sturdy way to get herself on the potty
• we needed grab bars in and next to the bathtub so that I could hold her hand while she got in and out of the tub rather than having me lift her
• we needed a shorter sink so she didn’t have to stand on an unsteady stool to wash hands (the stool in the picture is more for Bro’s benefit)
• Everything needs to be pretty!

The first thing we had to do was take off the glass shower door off. That’s a must for any kids bathroom! After some paint and beadboard I found this super cute handicap grab bar. We placed it across from the toilet and next to the bathtub. We placed a handle grab bar at the edge of the tub. Another mom from Sadie’s preschool class showed me the potty stool. I have tried a few others but this one was by far the sturdiest. I got super lucky and found one off craigslist. The existing vanity was really pretty but it was so big you could barely close the door, let alone get a little walker in there. Finding a sink short enough was tricky. I ended up getting a nightstand from Ikea, cutting a hole and placing one of their basin sinks on top. I kind of sort of splurged on the faucet.It has no other special purpose except that I LOVED it! Plus the water doesn’t gush out super fast so there's no unnecessary water splatter everywhere after little ones wash hands.

So far, depending on what kind of day Sadie is having (or what outfit she’s wearing) she has been able to get up on the potty by herself. We are still working on pulling up pants and getting down. She can get in and out of the tub with a one hand assist and she can totally wash her hands independently. She is working on teeth brushing, which I just generally don’t trust either of my kiddos to do on their very own just yet. All in all I’ve been super happy with the functionality and the look of our little bathroom.

 Before:

 

After:

 

 

Gypsy Musings

Ants, Moss, and a Geo Metro

Ah summer. All this warm weather and sunshine has me daydreaming all kinds of gypsy adventures! In true gypsy fashion, I run my Littles all over the place. Theme parks? Bring it! Road trips? No problem!  Museums?  I don't even break a sweat. 

 It wasn't always this way. Mostly thanks to my own expectations.  You know the drill... let's go to Disneyland! Pretty soon I'm dreaming of walking hand-in-hand through downtown. Gypsy Papa starts whistling a show tune, and we all chime in. My clean, well-behaved Littles throw their arms around my neck and tell me it was the best day EVER. They kiss me and thank me for loving them so much. 

Then reality sets in. It's hot, crowded, and the Alice in Wonderland ride is too creepy. Gypsy Boy stands in line retching because the man in front of us smells like onions plus feet.  Gypsy Girl is stripping nude because she's too hot and shrieking “this was the WORST DAY EVER!!!” Mr. Gypsy   is getting that panicky “about to run” look... ahhhhhh.... sweet memories. 

It took a few tries, but I finally found a solution. I  lowered my expectations.  (I heard you gasp.... keep reading. It's not as bad as it sounds!) I no longer EXPECT to go places and do what “everyone else” is doing. We do big stuff- like Disneyland- often. I don't expect to ride rides, take tons of pictures, or window shop. Our family has a blast, but we do what works for us. One of their favorites? Finding ant trails and poking at them with a stick. And the moss bit? You guessed it. We hunt for moss and take turns petting it. No outing would be complete without a parking lot hunt for a real, live Geo Metro! Preferably in blue. We proudly wear our noise-canceling headphones, skip the “boring” lines, roll down hills, and just have FUN. There is no pressure, and best of all NO GUILT over missed rides or leaving early.

Some may think this is a “waste”.... time, money, tickets, whatever. Not for us. For our gang it's all about creating memories, having fun, and enjoying our time together. Most likely we'll do a few  rides at Disney, have a churro or two, and probably see a few animals at the zoo. If we're super lucky though, we'll spot a Geo Metro in blue.

We have a first!!!!

Ladies and Gentlemen....we have a first! So let me preface by saying that up until now Beebs has always had mega anxiety about face painting. That included people who had their face painted to just the mere suggestion of it. The way Sadie gets over things is practice and exposure. She has gotten used to her friends having there face painted for Halloween or at parties. She doesn't cry and scream anymore when she see's a face painting booth. Her new way of coping with her anxiety is to throw her arms tightly around you and repetitiously ask "Do you love me? Am I cute?" 

We were at a birthday party this weekend where lo and behold were all of her kindergarten friends getting their faces adorned with all manner of paint. Sadie looked interested so I asked her what she thought of the idea. Her rote response of "Do you love me? Am I cuuute?" was given and so I didn't push any further. I quickly got distracted by saving Bro from certain sand box doom and then plopped down to munch into a hotdog (don't judge I just really like them, processed meat and all). Before I knew it there was a little 5 year old kitten meowing in my face! Yes! Beebs had gotten her face painted! I couldn't help but squeal in delight and text a picture to Daddy. His response was "I don't believe what I am seeing!" I just love it when my daughter surprises me and does something totally typical! 

Now you may say "every kid has there thing", and they do, but to see that unnecessary anxiety melt away was just wonderful. It's even better when it's replaced with excitement and a little "meow".

An answered prayer: Please let us survive the dentist

With all the things Sadie has to go through you would think that maybe perfect teeth should be granted her. No such luck. Today was dentist day number 3. The first day she wouldn't dare open her mouth for anything. The next visit with some nitric oxide it was a bit better as she retold a funny story to the staff thirty times over laughing loudly at herself every time. Today she did great as the dentist finally finished up the work he had to do on those pearly whites. Her Dentist was very nice and very hansom, which by the way when your wearing yoga pants and no makeup is always the case the law of the universe. Anyways he totally sang her to sleep during the drilling! It was then that I offered up my silent prayer of thanks. I don't ever expect things like this to go over smoothly but when they do this mother considers it a much needed miracle. 

Flat feet or no dessert!

Remember when "stop hitting yourself" was something funny that Pee Wee Herman would say. Well in my house it's said quite literally. Instead of "No running in the house!" I say "No popping wheelies in your walker!" Another very frequently stated rule in my house is "Flat feet!" or more so"For the love...FLAT FEET!!!!" (Sadie giggles when I say that one). This is not only a Beebsism it is now a

Broism: Bro is walking on his tiptoes constantly. Ahhhhhh nooooo!!!! (thats what you were thinking, right?) Coupled with his ever so ridiculous picky eater syndrome I have been a bit paranoid about a sensory problem.

Our Solution: I traced and cut these feet out of shelf paper and placed them on our tile. One row is for walking with straight, flat feet. I tell my kiddos that walking across them and out the door ensures that they bring their flat feet with them outside. The other set is a set to practice a side step down the hallway for better balance and coordination. Both are a reminder to use FLAT FEET!!!! 

As far as Bro's eating habits go, lets just say I'm ready to try hypnotism. He likes something from each texture group but he's a major gagger. I hope I'm just paranoid because of our experience with Sadie. But I won't be one of those moms who desperately turns away not wanting to deal with yet another special problem. No sir, I am informed and therefore responsible (dang it). I found this Sensory Processing Disorder checklist. Luckily I only checked off a few boxes for Bro where as Sadie would fill 80 percent of the test.That calms me a bit. It's a start and I intend to bring it to the pediatrician on Bro's next visit. Better safe then sorry. 

BTW: if you have pretty wood floors unlike me maybe don't try this

Just traced little shoes

I will now be moving these closer to the wall due to Sadie's surgery set back.

Witty Words Wednesday plus a shocking report

Words can make all the difference to our kiddos. Words carry meaning, tone and emotion. There are certain things you can say to Sadie that will give her a mound of anxiety that she doesn't know what to do with. Before she could speak it was a reality that she felt all her emotions ten fold. She didn't know how to recognize  or express what she was feeling. As parents we know what sets off our kids. We knew we couldn't talk about going to sleep or being sick. Sadie would have a panic attack if she saw a sleeping dog or crying baby. The people close to our family knew these things about Sadie and stayed clear of the subjects out of love and care for her. It was so hard to not have any way to comfort her and for her to not have the language to express how and why she was feeling the way she was. 

I have recently been reading reports about teachers and aids verbally abusing special needs children in the classroom. I watched a video where a teacher used a source of her non verbal students anxiety to punish him and make him cry. I felt ill. If you haven't seen the reports and you haven't eaten in a the last couple hours CLICK HERE. I can't imaging this happening in Sadies class ( If I haven't mentioned it yet I think the world of her teacher and aids) but she is in a mainstream class. The thought that this can happen in a place were the kids don't have a voice makes my blood boil!

Ok to bring your blood pressure down a notch I wanted to start "Witty Words Wednesday"

A. It will help me practice spelling Wednesday. Yes I mess it up so badly that spell check can't even help.

B. I wanted to start a consistent post segment and lets face it other peoples words are inspiring. Why is it that words from others (as long as they aren't a parent or spouse) seem genius? 

Anyhow, Here ya go. If you want to find the source for these brilliant words you can go to my PINTEREST 

Now thats what I call handwriting without tears!

Sadie has a very hard time with some fine motor skills, such as writing. Her behaviors always spike during writing assignments and we seldom get by without an incident. We have been trying different programs like Handwriting Without Tears with little success. Her writing legibility has improved but her fatigue levels have not. Our neurologist told me that Sadie should be using an iPad in the classroom. Her words were "asking Sadie to write that much is like asking her to run a lap before learning a lesson" And so she wrote a letter to the school recommending "assistive technology".

The school has finally approved Sadie to use an iPad for her writing assignments in the classroom. We had to have a little meeting about it with the "team". At first I felt like the Principle and RSP teacher were fighting against it. I could be wrong but the meeting started off with "an iPad is typically not used at the elementary level..bla bla bla..." I really should give them the benefit of doubt maybe they were just going into formalities but I couldn't wait to find out so I interrupted by saying "We will provide the iPad" That changed the tune of the meeting and we were able to go into exactly when and where we would use it. Some of you hard core special ed law knowing folks would probably call me a push over. The district probably should provide Sadie with "assistive technology" and after a bit of pushing and a million lengthy IEP meetings maybe I could get them to provide that, but the reality is this; that would take so much precious time that we don't have. The district has kind of already forked out a small fortune in services and a one on one aid for my kiddo and hopefully will continue to do so. This was a battle I didn't see any reason to fight. Sadie's grandparents gave us our iPad last year during all the hype about how they help autistic children in hopes that it would benefit Sadie. The iPad has so far been a tremendous tool in her development and using it in school is yet another huge way it can help her. To me it was a no brainer. Sadie's kindergarten teacher is very supportive about trying this out. She is very "Apple Savvy" and is convinced that she needs 23 iPads in her class:) I'm not going to lie this makes me love her even more. During the meeting Sadie was in her wheel chair playing on the iPad. At some point she wanted to show me what she was working on. She had typed "The mall is fun. The mall is a store." "See that" said her teacher. "No tears, no hitting, she did that all on her own. Thats why she needs the iPad!" By the way I totally didn't plan that, she was playing Wheres my water? last I checked.

An IEP idea

I consider myself an IEP beginner. I'm not totally naive but I'm certainly not an old hand at this yet. When Sadie first started kindergarten we switched to a new school that was worlds closer then her autism preschool program. This meant a completely new team. I decided to make a list for each team member with a picture of my daughter on it. I also made extras to have in her binder for any substitute aids or teachers that would need to know her quirks. The list was titled 10 THINGS YOU NEED TO KNOW ABOUT SADIE. This was a way to give everyone a small snap shot of the special little girl they would be teaching and helping through out the year.  When you make your list, it has to pass the "stranger test".  What are the 10 most important things a stranger (who is going to be working with your child at school) needs to know about your kiddo? Sadie's ABA therapists helped me come up with this list and number 10 is sort of strategically worded for a particular goal the school was trying to delete from her IEP. I plan on doing this every new year as not only will teachers and aids change but Sadie will too.

How to get a special needs bike

I will be the first to admit that sometimes I dream a little too big. Let me tell you of my Christmas morning fail. So when deciding what to get the kids for Christmas I knew that I really wanted to get Bro a balance bike. It's a two wheeler bike without pedals made for kids ages 1-3. I went down to our local bike shop and picked up a really awesome matte black bike with matching pirate scull helmet- super cute! After I took it home I started to think of all the fun he would have on this bike at the park and in the drive way, popping wheelies and squealing with glee. I then pictured Sadie feeling sad because she couldn't ride a bike.  The trike we first bought for her at age 2 has a push along handle and so that is all we could do was push her along because pedaling at that angle was super difficult for her. The wheels in my head started turning . I convinced my husband (meaning he didn't exactly say no but just gave me the "your crazy look") that if I could some how get a bike without pedals and that still had training wheels she could scoot along and have much needed bike riding fun with Bro. I had thoroughly convinced myself that this was the most brilliant idea and that I was a genius. The thought that Sadie might have a physical activity that she enjoyed made it all that easier to rush down to our bike shop and lay down a good little chunk of money on a shiny pink bike. The "bike guy" was super accommodating and put together the bike without pedals and made the training wheels a little more stable. I had dreams of my two children scooting around on there push bikes in childhood bliss.

Christmas morning came, we tried her "balance bike" and she went a little ways before saying she needed to rest. I thought if we just get out every day and practice that she would eventually get it and start to have fun. No such luck. I went to my Physical therapist with my frustrations. They had just received a special needs bike to demo so we put Sadie in it. There was all kinds of straps and buckles and her feet where even buckled to the pedals. Sadie peddled that thing around with very little effort and had the biggest smile of satisfaction on her face. I couldn't help but tear up, she was having so much fun on it. Her physical therapist showed me that because she didn't have to worry about trunk control she could focus on pedaling plus the angle of the pedals were positioned in a way to make it easier. "I need it! How much is it?" I immediately asked. Her therapist answered "probably as much as a used car". My heart sank. She then quickly explained that there was a wish list that we could get on, but it takes a while. It is through AMBUCS. I was all for it but it was a lengthy process. Let me break it down for you:

• You need a super gung-ho Physical Therapist who agrees your child will benefit from this "mobility device".
• Then your PT must write up a request and have your pediatrician sign off on it.
• A mobility equipment company has to come out and get measurements to order the bike with all your childs specific needs.
• The mobility equipment company submits to insurance and YOU WILL GET DENIED, but you need this denial letter to send in to Ambucs.
• Yourself, your PT and any specialists willing must write a letter to AMBUCS as to why one of there trykes would benefit your child. Go  HERE  to get the other forms needed.
• If your approved you will put on the wish list and then you wait. You are pretty much guaranteed to get one at this point but it takes from 4 months to a year.
• Need help writing letters? Click here to see my sample letters

I got my letter of approval just last month. Now we wait. In a perfect world I would get this magical bike in a month when Sadie's cast comes off. That way she can start strengthening again. Apparently there are donors that go on the website and contribute. The faster they contribute to your child the faster you can get a bike. You can even shamelessly petition for people to specifically donate for your child which is what I will now be doing at this point:

Should you be a sympathetic millionaire here is what you can do to donate to Sadie's bike as we still need 875$ more dollars. Go to http://www.active.com/donate/amtryke > fill in amount from 10$ and up and click continue> click sponsor specific rider> fill in Sadie Smith-  CA.

I strive to make all our "equipment" as cute as possible. If you fancy my fancy ideas here are the links from my collage.

1. amtryke 1416 by Ambucs 2,3,4,5 bike bells from etsy 7,8 Betty Basket liners 9.nantucket lightship basket 10.Basil Memory Bottle Basket 11.night owl bell   12.white bike streamers 

pay no mind that I totally forgot the number 6 completely:) I think Sadie will totally go for the cat with a mustache!

"and do you love me?"

Beebsism:When Sadie is nervous, anxious, excited or scared she will ask over and over again "and do you love me?"


Our Solution: Absolutely nothing, it's the sweetest thing and I adore it. In these particular situations Sadie went from uncontrollable crying and some head banging to then covering your mouth and telling you "no no! Don't talk about it!" and now to "and do you love me" I prefer the later, and no matter how many times she asks we all (including Bro) answer her in the affirmative.


Tomorrow is the big day. I know Sadie is a little nervous because I heard "and do you love me" in her little voice at least 30 times in the 10 min it took for her to get snuggled into her bed. She is such a brave little girl. I talked to Bro today about how Sadie was going to be in a cast and how we needed to take care of her. He responded "I am good at vat (that)". I love that boy. We will be up at 3am in order to get Bro over to my sisters and then get to San Diego by 5:30am. I feel really calm and reassured that all will be well. I am so thankful my husband is going with us. I know he's mostly going to be there for Sadie but I think he knows that I need him too. I know it's not like Sadie is having open heart surgery but she's having her heel cord cut! EEEK! No, I really am calm. (eeek again!)

2 days until surgery

I'm a bit scared tonight. It seams that Sadie is most definitely having her surgery this tuesday. The orthopedic surgeon is going to lengthen her heal cord on the left side and take out a muscle sample for further testing.  It's been officially scheduled for a month now but there were so many variables in which could postpone it. All the many tests the doctors have been running were to see if something else could aid Sadie's muscle development. Usually this surgery isn't done on children until there about 8 to 10 years old however in Sadie's case, the way she walks tip toed and turned in, threatens the proper development of her foot and the bones therein. I feel good about the surgery and hopeful about the outcome but I'm still scared. I'm scared about the recovery. I have to be prepared to start at ground zero again. All her gain will be wiped away and we will be virtually starting all over with strengthening her leg to get her to walk again. I'm not so worried about the actual surgery or the three weeks in the cast. I'm just worried about the inevetable aftermath. In this case I will really need to be in therapist mode and I'm not always the best at that. 


I have been prepping Sadie the best I can. She will have a temporary black wheelchair as opposed to her pink one to keep her leg up. The one was delivered to our home this last week so I have been able to talk about the change with her. All we have to say is that it's black like Zoey (my sisters dog) and Sadie is totally cool with it. She is also quite excited about her friends getting to draw on her cast. When I tried to ask her what flavor she was going to pick for the anesthesia mask she said "I've already picked all of them and none of them are very good" What could I say to that? I suggested that she should pick two like strawberry bubble gum to trick the doctor. She giggled and agreed that that would be funny. I don't know what else I can do. Hubby has that day off to go to the Children's hospital with us and Amazon just delivered a much wanted Lala Loopsy doll that I'm saving for the occasion.  I just always pray we are doing the right thing and concerning this surgery I have the overwhelming feeling that it is what we are supposed to do for her. 

Knee pads with style

Beebsism: Sadie cannot go from floor to standing without assistance and she cannot go from standing to floor without plopping down hard on her knees, making me cringe at the sound and sight of it.

Our Soloution: As much as I wish I had a magic wand to make her cute little legs work correctly I do not so I spent a good long time on the web trying to find a comfortable knee pad that would fit a giant crawling five year old. These knee pads from lil' melon are perfect. They have 2 designs that come in the bigger toddler sizes. They are soft and breathable. Not only do they protect Sadie's knees when she descends to the ground but they also protect her ever so cute Gap yoga pants from obtaining a hole when crawling around.

Gray Baby Elephant

Sometimes I think I can get away with the normal things that everyday moms can get away with. Sometimes I can and sometimes I realize it's never worth trying! So Sadie has grown out of her cute pink car seat and according to her age, weight and height is ready for a booster seat. According to her trunk weakness and compulsive behavior I am not ready for Sadie to be in a booster seat. This means spend 300$ on a 5 point harness that will last her 7 more lbs. or invest in a special needs car seat retailed at an ungodly amount. Luckily I researched a program that helps families obtain special needs car seats and I have been working for the last 3 months on getting one for Sadie. Yesterday I got the call that the seat was finally in and I had just enough time to pick up Sadie from school, make the hours drive to pick up the seat and make it home for ABA therapy. Bro and I picked up Sadie and just started driving. Like any other mom I didn't want to hear the whining and whaling about how long the drive was going to be, so I didn't say anything and surprisingly they didn't ask. Bro fell asleep and Sadie watched a movie and all was well. We ended up in a small office where two very nice ladies then wheeled out a big gray car seat. What came next was Veruca Salt times 96. Sadie screamed "IT'S NOT PIIIINK!!!!!! I WANT PINK!!!" Tears welled from her eyes. " I- do -not -like- NEW- CAR -SEATS!!!!" She wouldn't stop screaming. As I frantically started to fill out paper work, the small office seemed to shrink smaller as we now had every staff members attention. They offered her stuffed animals, fruit loops, gold. Ok maybe not gold, I was a tad bit frazzled at this point. Nothing could console her. I realized then I made a huge mistake. WHAT WAS I THINKING! Sadie cannot handle big changes without preparation and I had offered none! I usually have a social story with pictures or  I have talked about the new event for like a week. Major Mom fail! A thousand silent car rides were not worth this. I often have wondered how it looks to others when I'm explaining away my childs very terrible behavior. Here these people were giving us a practically free expensive car seat and my daughter was appearing to be the hugest brat on the face of the earth. I can't express how much it bothers me when people only see this and not the very sweet side of Sadie. That was the longest 35 minutes of my life. I knew she would get over it, and I have certainly learned my lesson. I was however happy to send this email to the nice lady handling our case:

Dear Liz,

 I Just wanted to thank you for working so hard on getting us the car seat. It fits her perfectly! I also want to thank you for graciously enduring my daughters tantrum yesterday. I think you will be happy to hear that this morning Sadie was overly thrilled to announce to her kindergarten class that she got a brand new car seat and it is the color of a baby elephant!

Sincerely,
Nicki Smith

Toca Tea Party for Autism

I wanted to show you one of our favorite apps in action. Sadie loves her iPad. In quite a few cases our special needs children prefer to play with an electronic over engaging in simple play. This app marries the two together. It took a couple years for Sadie to learn play skills. I felt like I was training a robot. However, after years of hand over hand and mimicking play for her, she got it. Play comes so much easier for her now. I wish this app and the ipad for that matter had been out sooner! If you haven't already, check out Toca Tea Party and all the other wonderful apps from Toca Boca.

Mommy OT

Don't you wish that after driving your child to endless therapies you could just be done when you walked through your front door. I'm totally guilty of callapsing on the couch (after 15 min of taking off AFO's from Sadies feet) and closing my eyes and pretending mommy isn't home for just a moment or three.  The fact is, when we get home it's harder because now we are mommy, house cleaner, cook, wife, and therapist.

Beebsism: When kindergarten first started Sadie could already read all the kindergarten words and even spell most. When it comes to writing she has a difficult time. At first her primary problem was applying pressure to the pencil or crayon she was using. For a child with CP the simple task of even coloring can be very difficult on many levels. Sadie's upper body has low tone. I realize there are so many kids out there that have it worse then Sadie but theres things she still struggles with. She's not only challenged physically with weakness but also challenged mentally with perception. 

Our solution:If we were pushing something that wouldn't budge we would push harder. Its a natural reaction. We have to train Sadie's brain to have that reaction. By making different sizes of theraputty balls she has to learn to apply different amounts of pressure. After a few months of regularly practicing this her pencil pressure greatly improved. You can do this at home with regular play dough too. The theraputty comes in different strengths depending on what you need. Another way to practice pressure perception and exercise (I think I just made up that term) is hiding things in the putty then have your kiddo find them. Sadie's getting a bit bored with bingo chips so I think I need to move on to plastic bugs with a check list to make it more fun.

app for social stories

So Sadie survived 100 day! Yeah! Her teacher let me know she started to get really upset but they read her the social story again and before they got through it she was all smiles again! Sadie's ABA case manager and I have been scouring iTunes for an app to catalog Sadie's social stories. How nice would it be to be able to have them on the iPad and on my iPhone where ever we go. We finally found an app called notability. This week it's only 99 cents! So this app is awesome for social stories! Here is why:

1. you can type in your social story right on your iPad then add pictures from google or draw your own!
2. If Sadies therapist writes one, she can write it in the app on her iPad, then email it to me. It will be in a notability file so I just open it up and wal la it downloads into my collection of social stories!
3. You can record your self or your child reading the story
4. you can title it and organize it in a table of contents sort of thing.

So the only bummer is that it doesn't transfer to my iPhone. If anyone has found anything better please comment or email me!

100 years old

So today is Sadie's 100th day of school and she was supposed to dress up like a 100 year old. When I went to pick her up yesterday I asked her if she was excited to dress up. Her aid gave me the "don't talk about it look" Sadie immediately told me how she did not want to look like a hundred years old but teacher had come up with the "most wonderful idea" and said she could wear her cute yellow scarf.  Which told me she had a hard time with the idea and her teacher saved it. (She does have the best teacher in the world by the way). So it was decided she will not dress up like an old lady but her yellow scarf would be sufficient. This morning I tried talking her into baby powder in her hair but she was not having it! When in the bath she said "Don't let me take a very long bath today, I don't want to get wrinkly!" This coming from a girl who would live in the bathtub if I let her. I don't know why she is so uncomfortable with it. She loves halloween as long as there is no make up and changing of hair color. This November I dyed my hair dark brown and all Sadie could say every five minutes was "why did you do that to your hair mommy?"She will ask me every time I do her hair if I like her hair color the way it is. Like I have this special power to change hair color and she's scared I will do it to her. Now that I think about it, I bet gray hair was brought up in class and that is what triggered this response. 

Beebsism:Sadie has a difficult time with change in her daily routine (sometimes). She also gets upset about random things she is uncomfortable with, by upset I mean scream and hit.

Our Solution:Luckily we caught that Sadie might  have a hard time with the "hundred year old thing" but I can't stop the other kids from dressing up. Furthermore her aids will be gone for 3 days to attend ABA training so there will be substitutes. This combo makes for a difficult day for Sadie and I hate that! Social stories work really well for Sadie. It's something she can read to give her the appropriate behavior to deal with a situation. I wrote this one last night:

I also put an immediate award (an i pad ap she wants) if she can make it through the day without hitting. I usually don't do this on a daily basis, but for a day I know will be hard I implement a reward for the appropriate behavior. We went over it a few times before school and then I left it there with the teacher and aids. Now lets all just cross our fingers and hope this works!!! Any suggestions? What do you do to prevent meltdowns?

Sadie is sporting Granny Chic today. How more granny can you get then a walker and glasses? Just don't tell her that:)

One hundred days

 Tomorrow is Sadies 100th day of Kindergarten! I can't believe how fast it's gone! After a couple years in the preschool autism program we wanted Sadie in a "typical" kinder class. She was above her peers cognitively but physically she has a hard time getting around. She is in a walker for part of the day, then for longer distances she uses a wheelchair. Oh and she kind of screams, hits and has melt downs over anything that bothers her. Any how, after a bit of a fight and with the help of an advocate, the school district agreed to put her into a typical class with a one on one aid. My husband calls it the "holly grail of services". He's right and I still can't believe we got it but here we are.

 Beebsism:Sadie can't isolate here index finger and thumb to make a pincer grip. This happens naturally as kids develop but Sadie has a bit of weakness in her upper body and she really has to concentrate to bring the other fingers in. It's like her brain is fighting against it, it makes my brain hurt just watching how hard she has to focus on it.

 Our solution:I wish I could say I thought of this but no, Sadie's awesome occupational therapist told me to bring in some gloves and like 7 min later she walked out with these:

The middle, ring and pinkie finger are sewn together and then Velcro attaches them to her palm. The thumb and index are exposed forcing a perfect pincer. Brilliant! It will take tons of practicing, but tonight she had to fill her bottle full of 100 beads for the 100th day of school tomorrow so it was the perfect opportunity to make practicing fun. The hope is that after doing this so much her fingers will be trained to go in when she wants with out so much effort.