Sometimes I want to be rude, impolite and just go off on judgmental, unhelpful customer service individuals. Last week I bought $400 in iTunes cards and then promptly returned them so that I could be reimbursed under rewards but use the money for speech or something else. Let me explain further, Maggie gets what's called a CSG, consumer support grant it's pretty much how I pay for everything relating to Maggie. At the end of the cycle, March 31, there is always some money left over in a category or two. This year she had about $100 in transportation which I quickly was able to send in gas receipts and about $1000 in rewards. Rewards generally include movies, music, iTunes cards for speech Apps anything that motivates her. Another trick to the funds is that if you don't use it you lose in the next year. So I talked to her Grant Manager and he suggested I buy iTunes cards return them and then the funds can be used for what we need now. Food, Gas, Co-Pays, Therapy etc.
Which brings we back to today. I took the remaining 300 and something worth of iTunes cards to the same Target I have been returning them to and was informed that I cannot return iTunes cards. What? Wait? Excuse me? What about store credit? Nope nothing nada - which is annoying but then the service rep asked "why are you returning them?" I replied "I need to show a receipt of purchase to be refunded it's complicated but It's for my daughter, she has special needs." This woman, retorts with "well I guess it's your own fault for abusing the system" Here is where I simply said "ok, whatever I will no longer be purchasing these through Target, I will use the Apple Store thank you" I Walked away annoyed! But what I was thinking was "Lady, you don't the first thing about me! What I go through. How stressful and confusing this dumb yet necessary CSG/system is. And if you want to walk in my shoes for a day and have to call the state and fill out forms and sit through testing and save every receipt and fax forms you fill out over and over and wait for checks to come in the mail while you've already spent the money, you never had to begin. Going to websites and stores looking for anything that will help with the needs at the moment. Talk with every therapist about what my child could benefit from and stress over every appointment well Be My Guest!
I didn't say any of that - I really, really wanted to though...
Due to watching an insane amount of award shows recently, because that's what I do, I have heard about this movie over and over again. Best made for TV movie or mini series, and the winner is, Temple Grandin. Best Actress. And the winner is, Claire Danes. Best this, most amazing that. And to be honest - Temple Grandin - you exceeded all the hipe and expectation!
"I'm different, not less"
The movie is based on the story of this woman's life. Her family's struggles, her own difficulties in expressing her needs, her dislikes, her challenges and people's own prejudices and insecurities. Now I'm not a movie reviewer so I will simply say go watch the film it's great!
For me though, watching the film hit close to home. There's a scene where Temple is spinning in a swing and swaying and then a flash back of her as a child throwing a fit at a child's birthday party. I looked over at Maggie and she was doing the same spinning and twisting of her chewy to calm herself down. Then there is a scene where this Dr. is telling Temple's mother to put her child in an institute and that it's her fault that her child is the way she is... I couldn't help but cry. Temple loves horses and cows, animals and that is Maggie through and through. I'm so fortunate to be close to horseback riding facilities for Maggie and that is something she loves!
It was a bit of an emotional roller coaster - in a good way.
It also made me smile that the movie came out February 6th, Maggie's birthday is the 3rd
It doesn't happen often... But I got a girls night out with some of the most awesome woman I can think of! Liz, administrator at Autism Matters and overall awesome lady. Jenny, who has a son slightly younger than Maggie. Her son reminds me to be grateful that I have a girl! He's adorable but all kinds of energy, anger and frustration mixed with testosterone. Chris has 2 autistic children and only a few gray hairs - which is amazing!! We can relate to each other. We can joke and commiserate and understand each other - because realistically, other moms don't really know what were going through. It was refreshing telling stories of the bad days and finding humor in the low points. The four of us had a fantastic time! Burgers and laughs are good for the soul.
My Child has days where if I touch her she whines and hits me. Other days she wants to hug and play with my hair. Recently she's been more cuddles and snuggles then throwing fists like Mike Tyson. Which I appreciate. I like this side. I love when she'll sit next to me and want to curl up with me. And I love it even more when I have my camera convinently ready to snap the moment in time. She's just so cute and sweet and adorable - She can fool people into thinking she's an angel and would never throw a fit. Ha!
(but I know you better sweetheart)Oh and the drool! And don't forget the Vikings t-shirt - maybe the combination of all things Maggie made for a particularly delightful child that evening. I'm not sure, but I wish I could recreate it every night! (I looked at this picture and realized the porch looks like jail bars on the window...)
My Baby is 5 and has already lost 6! six teeth! Her smile looks like such a big girl with those gaps in her mouth. And she is looking older and older everyday. I love when she's happy and connecting with me. Which often is not the case. Most nights she just wants her space and to be left alone to stem. I worry about her not wanting human contact. I have to remember that smells, textures, pressure and an assortment of other factors that I never think about - Is all that she is thinking about or control what she will or will not do.
This involves a whole other topic for another blog at another time but to say that church and individuals of those churches have been unwelcoming, unkind and hurtful would be an understatement but I digress... Friday night Maggie and I went to Shabbat at Temple Israel and were greeted with a genuine welcome. We moved seats twice before I found a seat Maggie was comfortable with. The first was near the back for a quick escape, but it was to close to the bright lights, she was not happy about that. Then we moved closer towards the vaulted ceiling and she liked the natural sunlights so this was our temporary spot. Once the music started it was... Sensory Overload... So I moved us again to the balancy and she did alright for a few minutes... So like I have done a hundred times we walked around and looked at pictures while listening to the service. I was able to hear a beautiful and timely sermon from the head rabbi, a woman, and about that point was when Maggie was DONE! And I know done when I see it. Only problem was I left our bag of books and cereal on the pew. By this point 4 people had said Hi, Shabbat Shalom to not only me but to Maggie, offered crayons and stickers, one older gentlemen even offered to walk around with her - all of these small and forgetful to some gestures meant the world to me! Just when I was debating how I would retrieve the bag a woman came up to me and offered Maggie a board book and showed us where the refreshments were. As I poured the grape juice for Mags she started asking questions about what Maggie likes and doesn't like. Offered suggestions on how they could accomidate, example being, setting up a live camera feed into the chapel where there are few lights and only ever a couple people. Then she took us on a tour and showed me the classrooms for religious school and told me about how all children are not only welcomed but taught the best way they learn - which is huge for an autistic child - She was so kind and I told her how grateful I was that she was being so kind, so accomidating. I should probably go even further to express how this has never happened before next time! When we were leaving Maggie was happy and bouncing and laughing even - It wasn't until we reached the car that I realized Maggie didn't completely meltdown.
An unexpected and completely needed successful outing! All because of Grape Juice and a board book.
I love the Holidays! I can go a little crazy in the Martha department but I enjoy doing it so no harm no foul. I like St. Patrick's Day as much as the next Irish girl but really this little Irish girl likes football. Touchdown!
What could make her so calm, relaxed and focused on a single activity? (notice the cereal everywhere)
NFL Draft! No Joke! She was focused like a middle aged guy!
(thank you Rocky for being both dog and vacuum)
Seeing as my child tries really hard to avoid anyone her size, I get to host play dates for my baby brother, Uncle Andy. Sense their get-together coincided with St. Patrick's Day I made them green apples and caramel, Green cupcakes & Green water.
I was going to be at speech therapy when they got home so I set out some stuff for them to take care of themselves. (he's 11 - I figured he could handle it)
Oops . . . I walked in the door and was greeted by this incredibly enthusiastic child "Mychael, Guess What? I got my first Chef injury! I can't wait to get my first sugar scar" He was so thrilled with himself. So I gave him a band aid and he bounced off none worse for the wear.
I think they had a really good time. And I'm so glad Uncle Andy is making good friends! It's hard watching your child or sibling not fit in and be on the outside. It's tough being the new kid.
There is no Workmans Comp for being a Mother. And Injuries are part of the gig right? Read the fine print, I think to myself, "it's just in the moment and don't take it personally" It's hard to separate your emotions from your child, but when they are in 'that place' of frustration and anger or an inability to communicate their needs, lashing out seems like a alternative method of communicating, as a parent it's necessary. I have taken a few sippy cups to the head. Been hit, slapped, and clawed at! Oh and in public, that's the best when every parent in a store is starring at your child and judging you, thinking to themselves "the worst parent in the world" or muttering as they stare at you "can't you control your child" - NOT! It's mortifying. It's exhausting. It's amazing how many times Maggie and I fall asleep after a huge meltdown because it takes a lot of energy for her to get as worked up as she does and it takes me even more energy to ignore every judgmental parent, stay calm and protect my child from harming herself - even if that means I take a cut, scratch or hit.
Minor hand scratching with a dirty fingernail - it hurts more now because it's infected.
This one hurt, drew lots of blood and is healing. But it's all part of the job right?
Touchdown! This is the sign for football, the sign the referee makes when a team scores a touchdown. Maggie cannot tell you with words but she knows a touchdown when she sees one! She will also sign 'False Start' and 'Holding' - she will also shoot you a death glare if your being loud and talking and not watching the game! With the 2011 season still months away I have turned to DVD's, NFL channel, & other football related items for motivators.
We have a Snuggie, multiple Jersey's, T-shirts, keychain, car stickers, a patch on her backpack, socks, football books and football movies. And now Vikings Tissues! I thought it was cute with the socks, I think tissues might have crossed the line into excessive.
But if my options are running nose or clean nose- I'm choosing clean. Happy Child over frustrated Child. Don't Worry Be Happy!
It's a little crazy but She's a True Fan!
This is the story of how the iPad saved me from going insane. It all started innocently enough. My Dad pulled out this $10 plastic fish aquarium, my aunt had purchased at Walgreens, to entertain Maggie with. She was hooked like a heroin. One time and then the world revolved around fish. This wasn't a problem till the fish tank died. The light went off and it started to rotate very slowly until - nothing. It was a huge meltdown of epic proportions and I do not wish to drag it from my memories so skipping a few details.
My aunt went on eBay and found a few backup tanks... The things we do for the ones we love!
It was getting to the point of ridiculous. Eventually My birthday rolled around and my dad who knows me very well and how much I love my apple toys, gave me an iPad! It was exciting! I found a fish aquarium App. (awesome mom award - I'd like to thank the academy)
Oh it has made a world of difference. She can take it in the car. She can look at her fish while waiting at therapy appointments. It's the perfect bribe, sorry Motivator, for her.
This is what the living room floor looks like every night now. Pure Happiness watching the fish swim and winding down so she can sleep. It gives her the sensory input she needs and provides me the sanity I so desperately need. Now if only I got to play with it more.... maybe an iPad 2 is in our future.
How Chewy's took over My Life... A long time ago I thought things like, "Where are my keys?" or "Where is my phone?" now I seem to constantly say "Where is a chewy?" I can't escape it! It's like the blob in a horror movie. At one, very well organized point, I had a chewy in my purse, the car, the diaper bag, her bedroom, and a few in the living room.
I don't know the exact day or time when my brain turned to a focus driven force to always be aware of the exact location of the Chewy's in the house but It happened.
I know, I know they help with oral motor, oral strength, sensory processing, speech & I'm sure other valuable ways. And we can't seem to go anywhere without them so whether I was prepared for this or not the Chewy Tube has become part of the family!
|Various chewy's - prefers the green and yellow|
Oh and did I mention these babies are 'Adaptive' Oh yeah!! $10-15 a tube. And don't get me started on the vibrating chewy's they start at $25 - On AMAZON of all places :)
Divorce rate in a typical household in America is 51%
(for a first marriage, closer to 65% in a second)
The Divorce rate among couple with a special needs child is 85-90%
Yesterday I was sitting waiting for Maggie to finish her therapy and this mom sitting next to me looked tired and a little sad, I asked her how her weekend was and she replied with "not so great" Eventually she spilled out that things have become extremely tense between herself and her husband. They have been together 14 years and the stress of their son has taken a toll in every aspect of their relationship. After this mom left another mom came in and was talking to the receptionist about changing insurance information because her divorce was finalized.
It made my heart break. For the parents. For the children.
I can relate to these woman.
I think about how much time a mom spends worrying, helping, consoling, talking to, caring for, thinking about, stressing for - nothing But their child. A spouse would absolutely take the back burner position. And that is not easy on any relationship. If either partner is at all selfish for a minute it becomes tense. And lets face it - humans by nature have moments of selfishness.
I think about how other relationships in my life have taken a strain. BM (before Maggie) I used to go on weekend trips with my aunts or out to dinner with an hours notice. I was fairly good at nurturing the friends I wanted to keep for the long haul. Now I find myself thinking of a close friend and then forgetting to text because I'm cleaning up a mess in the kitchen. I am so exhausted by 9:30 I lose all motivation to call and talk for an hour with a friend.
I hope for these woman that they are able to "just keep swimming" in the words of Dori, from Finding Nemo, I don't expect them to work it out or for it to get better. I'm not pessimistic it's just I have seen so many difficult situations to know that your child is your priority and your spouse may be better support for the child if you go your separate ways. It's still never easy though...
Like many ASD children, my daughter has a lot of sensory issues and of course she has Food sensory issues. She is very picky! So most children figured out what they like and eat only that
Trader Joe's Soy Yogurt
You wouldn't believe how many puffs are around the house, in my car, in the dog's stomach...
She can easily go through a box every 2 days! I think she should have her picture on the box and EnviroKids should use her for advertising.... just a thought
On the UP-SIDE it's so important to her she learned how to sign 'cereal' - that's love!
She doesn't sign 'mom' ...
I used to refer to my child, in a most lovingly yet truthful description, as a 10 lbs terrorist.
From day 1 it was an absolute nightmare driving in the car with her. She would scream and cry- then I would get worked up trying to calm her down as my head was about to explode from noise. When we would finally arrive she would fall asleep out of exhaustion. I HATED going anywhere with her. When we finally moved her from the infant seat to toddler seat it slightly improved, however still miserable 85% of the time. In the past year she has improved immensely. And a few weeks ago we got her a big girl toddler seat. So I apologize for the quality of the pictures, they are from my iPhone. But she was so happy, laughing, enjoying looking at all the cars, trees, 'Big' trucks, houses & people, I had to take pictures and share.
I was sitting in the waiting area yesterday while Maggie was with her Speech therapist. A fellow parent who I exchange experiences with was sitting next to me patiently waiting for her son to finish up his therapy. Maxwell is 5, about 2 weeks younger than Maggie. He is completely adorable. He has more words than Maggie but for the most part just makes sounds and avoids all eye contact. His mother, Naomi was telling me about how her husband has become increasingly strict and into enforcing eye contact with Maxwell. As we laughed and joked she honestly said "I would be happy if Maxwell would just say he's mad instead of looking away or hitting someone" another woman, not a parent but a PCA, butted in saying "well I would be afraid if what he wanted to say was inappropriate!" Naomi, whipped her head around shot her a look
lady, don't judge and until you've walked in my shoes...
That place where your desperate for any word to come out of your child's mouth
At that moment, Maxwell came from around the corner and like everyday he was avoiding looking at any of us. Mumbling something to himself. Walking towards the empty corner so he wouldn't have to be near any of us. Naomi grabbed Maxwell's arm to put his coat on and instantly he started to get worked up. Annoyed and starting to get physical. Naomi looked at me and joking said
"I wish he would just say, This is Shit Mom!"
We all laughed and thought this cute little boy doesn't even say 'ball' or 'mom'
Naomi got Maxwell to make eye contact with her and focused him long to enough to say
"Maxwell are you upset? You don't want to put your coat on?"
Maxwell looked away and Naomi moved his head around and asked him again
Maxwell looked right at her and said
Naomi was so happy she was smiling and crying. We all were laughing and getting emotional for Naomi and for Maxwell.
The Normal Parent would probably be mortified if their child said a swear word. Embarrassed and probably worried about anything else they might have said that their child could repeat. Gossip, a joke, an unkind description of a person etc. But for a parent of a child with Speech limitations and especially Autism.
We will take ANY word!
EVERY word! Sound. Sign. Anything!
As I see it. The "S" sound is important in many words. Maggie chooses to hiss when she sees a picture of snakes. It makes her super excited and we understand her "S" and that gives me joy that she, on her own, created a sound with the correct word/object (in the word of Speech therapy it's a big deal too)
One day at a time. One word at a time.
Cute isn't he?
Maggie's speech therapist is working on closure of the lips, control of her muscles in the mouth & her ability to blow/suck. First came blowing on a horn and a bubble machine. Now comes sucking through a straw. Of course it's not an ordinary straw... Oh Nay Nay!
It's Fancy! In fact it is 'Adaptive' - Now if the world of disabilities is new to you then let me explain. First your child is diagnosed. Then you must learn a whole new vocabulary or terms that your world will be bombarded with. I noticed everything was 'Adaptive' this or 'Adaptive' that... the description began with Autism, ASD, or Sensory. Then I noticed the price.
HOLY ADAPTIVE SMOKES BATMAN
Why is a package of 4 straws for kiddies at Target is 4.99 and a single adaptive straw 27.99 ?!?
Not so cute anymore don't you think?
Honestly Kids are expensive!! Disabled kids ridiculously expensive! If there are health issues - I can't even imagine! But why, WHY do companies take advantage of parents who are desperate to try anything to help their children. I don't understand but I really appreciate when therapists know how stupidly priced items are so they give samples away.
Thank you Heidi!
A bug is in the air and I don't care for him. Sick Kids everywhere including mine...
Both exits no waiting!!
Starting Tuesday night Maggie had bouts of vomiting (which was a very common occurrence before we changed her diet to Gluten Free Dairy Free) we had rotisserie chicken from Target, which we carefully checked through ingredients and thought was safe. However I do not blame the chicken. He was tasty and frankly she's had it before with no reaction.
So I blame the Flu Virus!
Multiple Loads of Laundry, including every towel and blanket in the house, a whole package of diapers in a day and We both survived :)
It's not about conquering it's about surviving!
Stab a knife in my heart OR have me fill out an assessment on my child?
I'll take the knife through my heart.
My Broken Heart.
Today I opened my daughters backpack to find an art project that was messy and beautiful like a Jackson Pollock. A lunch bag that was almost as full as when I sent it this morning with various options, from sweet peas to delicious orange segments to deli honey ham, hoping something would tickle her fancy. And an Hawaii Early Learning Profile (HELP) Assessment form.
I dread these.
My heart races. Guilt, pure emptiness and pain fills my body that is indescribable. Tears both visible and internal rush painfully to the surface where I have to bring my self to fill this piece of paper out. Rationally, I know that a secretary will input the results into a computer and never glance at it again.
And here I seat, starring at the questions and trying to distract myself with the now of bathing and putting my child to bed knowing full well that bath time is traumatic. Brushing Hair is a screaming and crying session. Putting bed clothes on requires crying usually from Maggie, sometimes from Me.
And the Irony - The questions on this survey pertain to
Independency in Bathing and Self Preservation abilities
A Big Fat NO to every question ....
Maybe next year right?!?