Ugly Yellow Card

In the mail today was an ugly yellow card in JD's name. WooHoo! Finally! What is it you ask? It's JD's yellow Access card- he now has medical assistance. Did I wear them down with my daily phone calls? Did they need the reminder that they were over their 30 day time frame and therefore in violation of the law? Or perhaps it was my promise to contact the media and ask them why the county assistance office was denying my ASD son his medical assistance when he automatically qualifies based on diagnosis?

MA opens up doors to services that JD is currently not receiving. Without MA he wouldn't be able to get these services from our private insurer- they don't cover most ASD treatments/therapies. So I've been anxiously waiting for MA to be awarded. As someone I met this week says, it's not a wait list so much as a frustration list. So happy it's finally approved!


But I wonder, why did they have to make the card a ridiculous ugly yellow? And why do those "caseworkers" give no explanation for the delay? And why so rude as to not return the phone call(s)? And how can they get away with not abiding with the law?

from http://www.keystonemercy.com/member/eng/help/id-card.aspx

Can Grandparents spoil their Autistic grandkids?

My son is the first grandchild. My dad was 67 when JD was born, my parents have waited a long time for their grandchildren. My dad is JD's favorite buddy, they have a very special relationship. A moment of not seeing his "Tata" is a great source of anxiety in JDland. Both grandmothers love him as only grandmothers can. He can do no wrong of course! Sometimes JD hugs or acknowledges the grandmothers, mostly he doesn't. No amount of calling his name, attempting to attract his attention or offering a treat will entise him. He does have ASD after all. I imagine it is very hard to get no greeting, no look- so I do get the emotion driving the gradmothers behavior. But as a parent, it is often times hard not to say a pointed comment. And I know the diagnosis has been difficult and they are handling grief in their own way. A grandparents grief is doubled- for their own child and for their grandchild. They are also still learning how best to interact with JD. And sometimes their emotions to ease his way interfere with my desire to use a parenting technique or at home therapy plan. It's difficult and frustrating for everyone involved. How much more difficult must it be for JD who is stuck between the argument?

Meltdowns are tough to see and to deal with. The crying, the hitting, the kicking, the screaming, the self injurous behavior. And so of course the first reaction is to stop it, to help the grandchild because who wants their grandchild to be crying? Here's a little advice to the Grands- during a meltdown don't touch, don't talk, don't try to engage. BIG NO-NO! You will intensify the meltdown and perhaps cause a huge shut down resulting in blankness. During meltdowns I try and find the trigger. If I can't find it right away, I leave him alone until he's back with me and calmed. I know it's hard to grasp but hugging him or attempting to sooth- actually are painful for him. And dear Grands- yelling at me for not listening and not allowing you to be Grands really doesn't accomplish much but piss me the hell off and make the situation that much worse. But hey at least the folks are Target got to judge not just how bad a parent I am, but how bad a parent the Grands are too. Twofer! Rock on ASD!

But this latest meltdown- BTW we haven't had a huge meltdown-shut down in a long time and I venture to say today's occurred because 1) I hadn't prepped him to expect the Grands 2) He's not used to going shopping with Grands and Me after school 3) He was tired from school. Too much stimulation, in other words. ASD kids love structure and routine- you can't expect to surprise him and have no meltdown. You also can't expect the kid to settle down for naps or meals if you're here or have just left. It usually takes us the better of an hour to wind him down from visits. So yeah, while we're on the subject Grands- we get kinda grumpy when visits occur spur of the moment and not planned. Because we know it'll mean a grumpy kid too. And if it's bedtime or naptime- not a good time to visit. We like structure and routine. It makes JDland less anxious and comforting.

It got me to thinking- Does ASD inhibit a Grandparents ability to be a typical Grandparent? Two seconds of reflection and I thought- well sure it does, it has too. You can still spoil your grandhcild to your hearts content, as long as you remember that you're not dealing with a NT kid, you're dealing with JDland. ASD is a whole another beast. You have to build a relationship based on what the tot's needs are, not what you expect. And you have to be mature enough to not expect the world to revolve around the grandparents needs. Haven't you heard, in our house the kids needs take priority? And isn't that what spoiling a grandchild is all about?

For all the Grands of ASDland kids- here's a good definition of a meltdown. No it is not just a tantrum. Tantrums are easy compared to a meltdown. If you handle it wrong, it'll make it worse for the tot.
Today my parents got the joy of experiencing one in the middle of Target.

http://www.autism-causes.com/

Here's some good Grandparents and ASD links I found this afternoon in my efforts to educate the Grands on how to deal with an ASD grandchild-

http://www.healthtalkonline.org/autism

http://www.autismspeaks.org/

http://www.takechargeofautism.com/ResourcesLinks.html




JD with his best buddy, Spring 2011



Autism Parenting Mojo where are you?

I went to an Autism Behaviorial training session yesterday. It mostly dealt with using Dr. Phelan's 1-2-3 Magic. Coincidentally, it's on my night stand in the "ASD to read pile". Anyone have one of those piles?
One observation from the introductions- very few parents there. Most of the attendees were professionals in the social services field. It felt odd to be there just as an Autism Mom. I sort of felt on display. Oh look Autism Mom in 2nd row! She's NOT a case worker. And then during the intro- Oh I'm merely an Autism Mom. I'm here because I need all the help I can get!

I wasn't really on display and certainly no one was rude. In fact there were all very helpful and one of them is even going to help me with my IEP meeting next week. But somehow I did feel self conscious and even somehow less important than the room full of titles. Which is silly I know! After all, I'm the one living in Autism JD Land. Hell, I live in a Twingle land- the land of a mom of both a single pregnancy and a twin pregnancy. And now F--ing Autism Land. And let me tell you, I am not one to suffer from low self esteem. I'm not shy and I rarely care what people think of me. But somehow ASD makes you crazy. It really does.

It makes you second guess and third guess everything and anything. Everything- from vaccination schedules (and no I'm not going to debate this issue, I'm not that crazy), diet changes, to whether or  not he should wear ankle or crew socks. Autism sucks, I can't say that enough. It sucks. Alot. Because it makes you a parent with parenting low self esteem. For whatever decision you think you've solidly made, you know somewhere somehow, there's some research out there that says it causes ASD or may cause it, or may make it worse. Have I mentioned Autism sucks? Yeah it does. I'm very much a Fight Autism now person. You won't ever find me in the accept autism camp. I love my child. Let me say that again- I love my child. He's a sweet, loving boy and he's my baby. But I didn't give birth to Autism- I don't have to love the disorder. 

I need to find a good parenting place to be, I need my parenting mojo back. Because anyone can tell you that low parenting self esteem is deadly to your ability to properly advocate for your child. I also need to learn how to swim through all this crap that's called Wrong Decision Panic! and learn to live with Trial and Error. It's not like ASD comes with a manual. I should be used to the unknown- God knows very little is known about Achalasia and I've been battling that since as early as high school when the symptoms started. I wonder if eventually you become an ASD Mommy warrior and uber advocate? You have to right? Who knows? Because I think it has merit, let me say it again- ASD sucks!!!
As JD would say in his sing song way- "Oh Autism Parenting Mojo, where are you? Are you here, Nooo! (giggle) Are you here? Oh no, Oh no, (deeply upset and heartfelt) it's lost." It's lost. Sigh. Tomorrow I'll try and find it.

Sleepless in Philly

Some nights after the kids are in bed I am so exhausted that I fall asleep "reading" in bed still wearing clothes and without having brushed my teeth. I stumble through the night time nursing only to fall back into bed, not even bothering to change. Other nights, I can not go back to sleep. I will look over to my snoring husband and want to smack him. I envy his sleep. Some days I poke him, to make him turn on his side so he snores less. Ever notice how annoying the snoring is when all you want to do is sleep?

I want to go back to sleep because I know what type of day lies ahead of me. This is how my day goes: Wake to nurse one of the twins 3 times during the night & hope Cems isn't in bed with you in the morning, wake up and start the day. Get the kids dressed and fed, get yourself dressed (fed is optional), out the door for school or therapy, everyone strapped in to their carseats, realize you forgot to brush your hair Again! Come back start lunches & diaper changes, play time followed with flashcard mommy speech class (I "sit" with JD and we work on pronouncing our flashcards), diaper changing time, snack time, someone's crying, nap time, start thinking about dinner, wake them up for dinner, someone's crying, cook dinner or order dinner, is it bedtime? Someone's crying. Is hubby home? Fight with JD to stop snacking so he'll actually eat dinner, stop cooking dinner because someone is crying, When's he coming home? TV time while the tot eats (me eating is again optional), Feed the Bogos in their chairs or exercausers, Where the hell is hubby?  Someone is crying. Finish dinner, hubby is home- Thank you God! TV time and then bath time, bed time, Ssh don't make any noise. Then I pass out. It feels like a triathlon. So I need my sleep.

Bedtime is when there are no distractions, nothing to keep us living in the moment. This is the time when our emotions are gripped with fear of the unknown. I start to assemble a list of things to do, phone calls to make, a new therapy to research, did I switch the laundry to the dryer? Are the kids covered in their blankets. But I also worry about Autism striking our family again. If I let this fear take control it will permeate everything. The girls are 35 week preemies, we know there will be some delays. What will they be and what severity? Please let it just be that. Is JD done regressing? How come the girls don't speak more. Cems isn't crawling as much should I schedule an eval for her? What will we do if ASD strikes them?

I don't know why I worry because there's not much we can do about it. It is what it is, we get what we get, and may the Lord show us some mercy, please. Why am I still awake? Tomorrow when I wake up will my little boy still speak and hug and love like he did today or will Autism have stolen a little more of him? For a parent dealing with Autism, night time is the loneliest of times. It's at nights when my mind doesn't shut down because it is too busy silently screaming.



Moonlit Night from: http://www.parablog.com/wp/2005/04/14/moonlit-night/



Moo cows

I applied for JD's medical assistance on January 6th and have both faxed and dropped off supporting documentation. On January 29, I hand delivered these same documents to "the drop box" in the local county assistance office. There is no person you can hand deliver and get personalized confirmation. You have to write your own confirmation. WTH? I wonder if that's even legal- would it stand up as legal evidence of providing the documentation? I think I am still emotionally scarred from going into that office. Talk about sensory overload. Thank God I didn't take the kids. Room full of people, like cattle, workers with a permanent glazed expression. And the office itself was dirty and depressing. It was not in a very pleasant area of the city. It certainly isn't an area I am usually visiting. I found the manner in which that office operates to be demeaning-- think cattle in a slaughterhouse and you've got it about right.

For those of you not familiar with Pennsylvania's medical assistance program- JD is automatically entitled to receive MA regardless of our income based on his medical condition of autism. MA usually has to be processed in 30 days unless there are special circumstances or the application is incomplete and then the MA office has 45 days and they must notify you. There seems to be no rhyme or reason as to when cases can be completed within 30 days. From talking to other parents, it seems to be standard operating procedure to receive a denial and then have to reapply. Who knows why?

I probably would know if our case worker would care enough to show up and answer her phone. Since January 30, I have called our MA case worker at the county assistance office every day, left 8 voice messages for her, left 3 to her supervisor, and called the status hot line 3 times. I'm beginning to think they don't actually exist or aliens have abducted them. Maybe that's why there's been no communication. Maybe I can take out a missing person report on them. Yeah, it's been fun. I can't tell you why we still have no MA, why no one returns my calls. Apparently neither can their hot line employees who all wonder why we haven't been approved?

Why is this a big deal you ask?

We need MA to pay for ABA, to qualify for other services such as wrap around services, and it would be nice to no longer have co pays. We are paying $40 co pays each time we go to speech therapy and we'll eventually meet our insurance cap on allowable visits.

Does anyone know where the hell our MA caseworker is? Because she's never at her desk. And neither is her supervisor. Maybe I need a cattle prod?

Moo, Moo!

Photo source

Happy Valentine's

Today was school day. JD was in full blown meltdown mode from the time I woke him, dressed and dropped him off at school. 1st, he didn't want to go to school. "I tired, I want sleep." Then he wanted to go to school dressed in his Toy Story Buzz Lightyear Footie PJ's. I struggled to dress the flaying fish and got hit and smacked in the process. After the storm, I cried on the couch. Bear with me, this is a happy post- Really!

When meltdowns happen, it's not just your ASD kid living it, it is everyone else in its path who is affected. Especially mom or dad, because we're trying our damnest to redirect or snap them out of it. But we're also inside the eye of the meltdown and this is quite a different phenomenon than seeing one as an outsider. An outsider becomes the movie critic and feels we're doing it all wrong and they know just how to solve it. An outsider feels we should stop yelling or restraining (to prevent injury to self or child). Those of us in the meltdown, however, are so emotionally raw and hooked in the same freakin cycle that we're helpless to stop and walk away. We're just trying to ride it out and survive it. The truth is I don't have a freakin clue if my approach is best. Who the hell knows? And don't judge or criticize how I handle my son, I already do that enough. Trust me, I am my worst critic. I don't know if I can be what he needs. Maybe I'm a crappy mom who is making it worse. Maybe I'm weak and just can't do it. This is the only thing I know- I love him so much and I'll be damned if I let ASD steal my child. And yes somedays I'm going to scream and cry. I'm human. Deal with it.

ASD is like a rollercoaster as I've mentioned in previous posts. With some trepidation, I picked JD up not knowing what to expect. He was gave me a hug and a "Happy Valentine's Mama!" Suddenly, with that smile and a unsteady run towards me, my day was all better. In fact, it was a Swonderful, Wonderful, Amazing, Fantabulous Day! I got hugs and kisses and smiling eyes from my baby. And I got one more thing. . .My little man made me not 1, but 2 handmade Valentines! "It's hearts mama, Look I did hearts!"  My baby knows how to treat a girl right on Valentines. Who needs anything else from anyone else when your little one gives you a Valentine and hugs and kisses. Toss in a happy ASD kid who spoke in sentences-- Tears! Smiles! One proud mama! Happy Valentine's Day everyone.

Happy St. Valentine's!

ASD Special Gift

A Pinterest search for DIY sensory projects lead me to stumble upon an online debate between mentally gifted and ASD kids and their similarities. Even when I'm not looking for debates and controversy, I find one! Did you know some people think there could be a link between mentally gifted and ASD? Some believe that ASD is a misdiagnosis of MG kids. Maybe or maybe not. You know what? I don't freakin' care! I'd like to return ASD and any other extras that come with it. Can you tell me where I can return it? Do you think I can return it at Walmart? I hear they return anything.

Everyday I learn something new about ASD and its world. Sadly its never a cure, although God knows so many things on the internet promise a cure. Usually its an opinion, another useless study, and some really passionate parents arguing that their personal belief is right and you're wrong. Meanwhile JD struggles to speak, to be understood, to control his emotions and energy, craving structure and endless cues and reminders. It's another day where we struggle to keep ASD at bay. I don't have time to debate or to be an autism advocate. I'm too busy being a JD advocate. And I really have no need to criticize a parent's belief or strategy. However parents choose to safely and lovingly parent- that's up to them and not for me to criticize. I would really like to be able to do any type of internet search without encountering someone's negativity and judgment though. I'm coming to understand that ASD parents are very critical of each other, which seems a shame to me. Shouldn't we all have a sit in a circle and share a Kumbaya my lord moment?

Regardless of where you stand on any ASD issue, I know we all love our kids, the NTs and the ASDs. And we're all just trying to do whatever is best for them. But you gotta admit, if we could return it at the returns department of (insert your choice of religious beliefs) there would be a long line wouldn't there?




JD in his room at bedtime



ASD, Potty training, and laughter

You get some pretty interesting results on Google when you do a search for potty training with ASD. At this point, I'm just looking for other ASD parents who have found success. You see, JD has outgrown size 6 diapers. Size 7's are hard to find and expensive as all get out. We're using Goodnights and Pull ups but JD doesn't really like them. In fact, he takes them off and tells me he wants diapers.

I have been thinking of trying to potty train (again) for a while now. I think he's capable of it but who knows? I was plagued with doubt-- until this afternoon. And it went something like this-

JD ran up the steps after me.
Me: "I'm going to change your poopy diaper."
JD: No, change diaper! I go potty." Off we go- I don't know which one of us was more excited. JD sits on the toilet, asks for toilet paper, and tells me he needs to flush.
Me: "Did you pee? No toilet paper until you go potty."
JD: " I go potty! Need toilet paper."
Me: "Did you pee? I don't see anything. Lets wait until you pee." They never tell you that as a parent you'll inspect the potty contents for your kids.
JD: "I did pee! I flush toilet. Need paper."
At this point I am cracking up. Then I realize-  well if understands when to flush, then he can understand when to go potty!  So my friends, we're going to start potty training! So that JD can flush and get toilet paper!

People watching

One of the babies favorite things to do is people watch. They giggle, they smile, they cry, they stare. To them, at 10 months, people watching is an experience they can immerse themselves in. They thoroughly enjoy their environment, quickly learning how to adapt and respond to each experience. It is so much fun watching them develop and yet also rather bittersweet. Mostly because I compare their development to JD at the same age. AP just learned how to clap her hands and recently learned how to crawl. She is so proud of clapping that she claps, shows you, and then beams a smile at you. As if to say, "Look what I just DID!" JD had been clapping for quite a while at this age. He was starting to walk holding on to things, he was a master at crawling. And yet at this same age he wasn't saying as much as the girls. The girls are much more vocal than he was. I wonder, will I always compare his development to theirs? Will I always feel bittersweet? And what will I feel, how much hurt and sadness, when they surpass his development? There's no comfort to these questions, and so I try to brush them aside for another day. Today I live one day at a time.

I like when JD people watches. He stands still, as if frozen in place, his hands and arms close to his body, slightly leaning forward. There's an awkwardness to his stance. Sometimes he spins in place (although this is less and less), sometimes he stomps in place, but mostly he sucks or bites his fingers. It's a comfort thing for him. And he watches the world around him. But unlike the girls, there are no giggles or smiles, no emotion. It's just a stare. I wonder what goes on in his head, what does he think? I usually ask him or interrupt and make him engage. He perks right up and starts jabbering away, sometimes I can understand, other times I can't. He gets so excited trying to explain what he was staring. And then I realize, he's as engaged or immersed in his people watching experience as the girls. But it's just manifested differently. Because life with ASD is a little different. As if you didn't already know!

JD 1- Car Show 0

We went to the car show today- JD, the twins, and me. I don't know if it was bravery or stupidity- maybe the chronic sleep deprivation but I got the kids up, dressed, fed, and out the door we went. Drove down to China Town, got stuck in Parade traffic, overpaid for parking, grabbed the diaper bag and off we went. Stupidity or bravery- Can I just say I totally rocked it!! Because I sure #ss did!
Here are the highlights-

1. Get stuck in Parade traffic- Chinese New Year. We see the dragon and the lantern lights hanging. JD in the back row: "Mama- Look Dragon! Dragon! Dragon! Look Balloons (lantern)."  That sentence was worth the trip right there. He was so excited. We just finished watching a Caillou episode about the Chinese New Year. Did he make the connection? I think he sure did. Proud Mama!
2. I park on the 5th floor, get the girls out of the infant seats and strapped in the double stroller while holding on to JD who as you all know has no fear and has no sense of danger. If I let him go for even a second, I really don't know what he'd get up to.  You know that handicap parking permit would come in handy right about now.  Thank you Autism Daddy, ours is on its way! So we get close to the elevator and I notice there's freaking 3 steps up to get to the elevator bay. WTF?!!! Seriously? What did I do?  Well I didn't cry. I let JD go up 1st and told him to stand there and count the steps for me. I lifted the stroller from the middle and lifted the damn 50 lbs of it up the 3 steps. I had a couple choice words for whoever designed that parking lot too! We then hop and skip on our toes across Broad Street. Well atleast JD did. I was busy whimpering, 3 herniated discs, lifting anything isn't a good mix. 
3. There's a line at the ticket booth. Crap. How to avoid meltdown impatience city? We took a walk to the ATM machine and then came back and bought my ticket. The kids got in free. If one more person tells me how busy I am or how full my hands are, I will not be responsible for my response. Is that necessary folks? Don't you think I KNOW that? Shut up, did I ask for your opinion? Be helpful and get the hell out of my way. A double stroller is hard to steer one handed. I just might run over your toes. Anyway back to Highlight #3- another elevator. JD loved this elevator. So did I because there were no steps to climb. The elevator floor was black tile but it was really shiny and you could see your reflection on it. Plus it went up so fast that it gave you that stomach on the roof sensation. It kinds made me dizzy. But JD-- he thought it was all hysterical and I had a heck of a time convincing him to get off the elevator. I did not pay $20 parking to ride an elevator kiddo!
4. Once we got into the Philly Car Show, I swear birds sang and the gates to JD car heaven opened up. Million dollar smile, jumping up and down squealing. "Cars! Cars! This way, this way mama!" So what if I had a stain on my sweatpants suspiciously like a popsicle or that I had to keep hiking them up?
5. Then, the funniest thing was going through the show a mile a second! I mean you'd think we were in a race to get through it. He grabbed my hand and lead. It was all a blur. He loved this hideous lime green Scion, a racing stripe Dodge Challenger (I think thats what it was called), and the Fiat display because it had die cast cars on display. He also liked Toyota because it had balloon in glass. Couple rough patches where JD decided to throw himself on the floor but either I redirected, walked away (while staying close by obviously, I'm not a loser mom who will abandon their kid), and sometimes carried him like a football while steering the stroller. Did I mention I rocked it today? But JD rocked the car show the most. It was great to see him engage. Spinning around, squealing with excitement. The girls were angels, snacking and waving at everyone.

JD won the race through the car show. He sat in a couple of cars, did NOT stop smiling the whole time there. Very much worth it.  Oh and BTW- I carried the stroller down the 3 fing steps in the parking lot to get to our floor from the elevator bay. Goofiest thing I've ever seen. My bag clip didn't survive the way down. My back is bothering me and I no longer doubt that I have a hernia. It most definitely is bothering me now. Guess the doctor was right. But hey JD loved the experience. Here he is trying to figure out which way to head 1st. He came right back and held my hand and dragged me everywhere. Since I told him he'd be lost and I'd be sad if he walked away from me.

Sticking together

People who say they wish they had twins because taking care of 2 babies is the same as taking care of 1--are people who have never had twins. I should know, I was one of them! Now having survived 10 months of twins I am telling you it is Exhausting!! Double the fun, Double the love--whatever, it is hard work. You want me to butter it up, you better go to a different blog. Most days, I'm happy if my socks match and if I can squeeze in a shower in 5 minutes. I've been tired since the second trimester of the twin pregnancy.

When I was pregnant with JD, we were ecstatic and anxious as only a couple can be with their 1st born. A week after JD was born we all came home bundled up against the cold windy October air. Suddenly a family of 3. There were 2 of us and one baby. We worked as a team and learned how to parent together. And one night a week I'd rush off to grad school and the hubs would have alone time with the baby. I breastfed him at nights, rocking in the glider during the predawn hours. I would look down at him nursing and had the luxury to sit and bond.

Fast forward to a 2 year old very active little boy, a stay at home mom, a frazzled dad, and bam we're expecting twins. And they're girls! Wow! Three days after they're born, we stop at my mom's on the way home from the hospital with twin girls in their infant seats. We get back into the van with JD in the backrow. And he has 2 baby sisters. And we start the 20 minute ride home as a family of (gulp) 5. Damn, the kids outnumber us!

JD meeting the twins.

The only way to survive, in my eyes, is for the grown ups to stick together. We must be a team, united in 1 mission-- to raise these kids right and somehow still survive as a couple. You think it's easy? Let's look at the odds: 13%  chance of divorcing when the oldest child is a singleton and twin babies. Parents of autistic children have a 24% chance of divorcing. Some say that parents of ASD kids have as high as 80% odds of divorcing. I don't know about you, but I'm not liking those odds so much.

The battle of survival starts once the hubby goes off to work. Me against 3 of them. 3 diapers to change, 3 to feed, 2 to breastfeed on demand. Somedays we have therapies or pre school thrown in there. And at least one of those days my parents and sister help out or JD sleeps over at their house. I'm usually on my own until dinner and yes somedays I count down until it's finally 2 parents against 3 kids. Around 8 p.m. when I'm bone tired I realize I never brushed my hair, I have juice stains on my pants or my sweater smells distinctly like baby spit up. Then I read until I fall asleep. I have no idea what time the hubs comes up to bed. All I know is that around the time CE wakes up to torment me-- err to nurse, hubs is in bed snoring away and I make my stealth way into the girls room and try to win the nightly battle of get CE to sleep in the crib all night.

So is it any wonder that the divorce rate is increased with twins? It's because I'm too busy being a mother and I often forget how to be ME. You know the ME I used to be before Motherhood took over? The Me who didn't buy underwear and socks out of a package from Wally world. I should have Patience for my husband you say? You go through my day on little sleep and repeat it again and again and tell me how much patience you'd have left over for a grownup. I venture to say not much. Somedays I look in the mirror and shake my head laughing. Is that really me? Yup. Motherhood- it's a legacy of love and survival. Being a parent is about trying to stick together, raise a family, and hope you don't screw it up too much. Being a twingle mom-- it's about surviving and loving your kids every second, except maybe when you're in a rush and your kid wants to count the steps with his left foot only.



JD & Me, 2 mos. old



Acts of Kindness

Somedays you find the nicest and caring of people in unexpected places. And sometimes those who are in the position to help you the most, are well very disappointing. Yesterday while the tot was doing Yoga at school, I was at home with the twins making phone calls. JD's caseworkers are both avoiding me. I'm hitting roadblocks with them. Maybe they have heavy case loads or are burnt out, but I haven't been impressed with their professionalism. It is frustrating and it makes me feel like a stranger in a big crowd begging and screaming for help, except everyone is too busy going somewhere to stop and offer help.

But yesterday my faith in mankind was reassured. 3 people who don't know me all that well took time out of their busy lives to offer me some free helpful advice and give me very good news.

A's home physical therapist and the finance guy at the Center for Autism gave me tips on overcoming the roadblocks to get JD's services up and running. They gave me resource information and assured me I am not being unreasonable. I need to become a very loud squeaky wheel and be persistent. And his services and coverage are guaranteed under state law. Did you know Pennsy is the only state with an Autism act? Autism Act Fact Sheet Amazing. It needs to become a national law. Then the last call of the day was from A's hemotologist at CHOP. She was kind enough to personally call and give me blood work results. When you have to repeat labwork because the 1st time it was abnormal, the mind of a parent goes to very scary places. You know-- back to begging God to spare your child. So we got good news for AP yesterday.

Around 10 when I jumped in the shower and all the kids were finally asleep, I let myself cry. I often cry in the shower-- don't tell. It is hard to be a mom. It's so much harder to be a special needs mom. But today was a good day, 3 people took time to be kind. Oh and JD perfected his downward facing dog Yoga pose at preschool. And he said good bye to 2 of his classmates. Yeah, it was a good day. Even if JD didn't want to pose for a pic. Too busy having a good day.