PECS mania!

PECS mania at our house! Before the Diagnosis (12/21) we were anti PECS. How can this help him speak? If we give him cards with pictures to communicate, won't that teach him it's ok to NOT speak? We want him to speak more! No PECS. Denial and desperation for a non ASD world is a powerful thing. This was when we still harbored hope that we were dealing with a mere speech delay. (I'm not minimizing speech delay- we deal with it, it's NOT minimal. But when compared to ASD- well you get what I'm saying right?)  Fast forward several months to today- We have EMBRACED PECS. So guess what I'm doing right now- ordering a PECS system. Wow, they're not cheap! Using some of our tax refund on JD. Would be nice if medical assistance covered it.

He has PECS in his special instruction preschool and he loves them! He runs to his chore board, to his schedule board. He loves his rewards board. He puts his coins in the bag when done. He points to them and says the words out loud. I'm doing this then I'm doing that. "Mama, I did _____ and then we did _______." Anything that gets a whole sentence out of him is an awesome investment! I AM A PECS BELIEVER. It makes transitions much easier, helps him remember chores and schedule. It calms him- minimizes meltdown incidences.

Does he have anxiety disorder? I don't know. He doesn't appear to. But who knows, there's so much he still can't convey to us. Would it surprise me to have an ADHD diagnosis when he's older- nope. I'm sure there's lots of other labels that JD will have once he's older and we can more aptly see where he is developmentally and where we'll likely end up. But you know what? I don't care how many labels they can put on JD. As long as he gets services to improve the labels- label away I say. We'll EMBRACE the labels!

I know crazy right? So many parents out there who fight the "label". Is it a form of denial? I think so. It's a parents natural reaction to resist the change in their reality- well to the awareness of their reality. Fighting the label- to me, is pretty dumb. How can the act of getting a label/diagnosis change the reality of what you're already dealing with? I mean- you are seeing the specialists because you need help, you believe there's a problem- right? Because otherwise why would you go to the specialist? If your doctor told you to go to the specialist and you thought the doctor was insane- you probably wouldn't go see the specialist right? So the fact that you are seeking help- means that you believe something is wrong even before you get a diagnosis. So you're scared of confirmation- that yes indeed there is something wrong. You're scared of the DIAGNOSIS. When really you're scared that the issue/problem is not going away anytime soon and your child isn't "normal".

Is anyone normal? Let it go. No one is normal. We're all kinda weird aren't we? Everyone has a quirk. Let me tell you a secret- embrace the label. You want to tell me my son has ASD, developmentally age 2, cognitively age 2, speech at age 2, hyperactive, oppositional disorder (I've only heard this one once), ADHD, apraxia, motor apraxia, PDD-NOS (only once- CHOP and I agree that he has classic autism. Nothing not otherwise specified here. At least not with this kid. Whatever labels, acronyms, abbreviations, letters, you want to throw after his name- go for it. Now tell us what we get with that! What do I mean? Well-

My son is so much more than the label. We've come to view "the label" of ASD, cognitive delay, global delay, speech delay, whatever delay, as an aid to get more services, just as PECS is an aid to improve speech. Labels are a way for us to get more aid to fix whatever behaviors are causing the label. Without ASD we would not be receiving ABA, OT sensory, or medical assistance. So for us, the label is a good thing. At least so far. It might change when the label prevents us from getting a service. But still- labels aren't bad. Our reality is the "bad" which we have to deal with. Not the label. Post label- life is much easier and stable than before- because at least now we know what we were doing wrong and we know how to make it somewhat better.

http://www.amazon.com/gp/product/B0019CUD3C/ref=gno_cart_title_1

Great info about PECS-

http://www.tacanow.org/family-resources/pecs/


Where to buy PECS supplies-

Amazon- search for PECS
www.pecs4autism.com
http://www.pecsproducts.com/catalog/

The BOGOs

Having twins is completely different from having a singleton baby. Even the whole pregnancy. The delivery is surreal- you have two teams of nicu staff, you have the anesthesiologist standing by, you deliver in an OR. Most of my delivery was in a regular L&D room and then when I felt pressure and the doctor checked, I was wheeled into the OR and with a couple of pushes welcomes Apple into the world. 5 minutes later with 1-2 pushes Cems joined us. Then a very scary hour later, I was able to hold my girls and be thankful that all was for the moment well.No time for pictures with the doctor and team like we did with our singleton. Everything is quick, precise, and all baby birthing business. No relatives visiting this time around because I was on the mag drip and that crap is nasty and makes me generally miserable.

You're discharged and suddenly there are 2 babies with you at all times. Well in my case 2 babies and a tot at all times.

My favorite time with the twins is at night, during their nursings. Mainly because it's just me with them in their room. I love watching them sleep. Cems and I rock in the glider, her hand desperately clutching her favorite boob as if I'm going to take it away any second. She clings for dear life. This baby would nurse all night if I let her. I will remember all those nights that out of desperation, I bundled her in my covers, in my bed, and let her co sleep with us, just so I could get some sleep. Waking up for the first 10 months to a baby Cems in our bed with a bad case of bed head. And she sleeps cuddled in her blanket and she loves to tuck her feet in the blankies or on me. When she's awake, she'll stop nursing, look up at me with her big brown eyes and grin. Her eyes smiling at me. There's my troublemaker Cems. And during the day, she's my clingy baby. Always needs to be soothed or cuddled. Raises her arms to be held and screams bloody murder if you ignore her. She cries as if her soul hurts until she gets her way and she's got Daddy wrapped around her finger-- oh yes she does! She's a smart one.

Now my Apple girl- she's quieter. She's got this sweet angelic smile and a bit of a temper. But she's also the smarter of the two. She waits her turn or silently goes stealth mode and gets into things she knows she shouldn't. She'll steal things off her siblings. She'll climb up steps and clap at herself. She'll stand up, turn off the tv, turn and grin at you. She'll stare at her brother acting out or playing and grin. She loves JD. And she hates when I'm out of her sight. When she nurses at night- which isn't as often at Cems- I must be quiet. She must be on my left side, she must hold my hair, she must lay just so. And then she looks up at me and grins and giggles and talks to me. "Mama, Mama" and she looks so much like JD at times. But when she sleeps- she's all over the place. She will be a bedhog. and a sheet hog. Just like her mama.



BOGOs- Caems (l), Apple (R)



My two girls don't look alike, Apple is a good 2-3 inches taller and several pounds heavier than my little baby Cems. Both have such different personalities. It's easy to picture the future, as teens. But it also scares me to plan that far ahead. Life is teaching me to plan one day at a time, one moment in time. Because sometimes our life doesn't go how we'd like.

I'm so happy that JD has them to keep him company. How they'll all keep each other company as they grow up together. All the fun and laughter- and just how much life they've brought into our house. And wow they've brought alot of noise and toys into this house too. They've made us a family. I'm very thankful for all the good things in my life. So much so that I'll take the bad that comes with it because a life without the kids-- that's too quiet for me. The journey to have kids, the journey that hubby and I started back in 1998- I love that journey. Because it brought us to the here and now. There are no words to describe how much I love them. I love my 3 babies more than anyone or anything ever. They are my joys.



The Twingles!



Vaccine Nation- MisInformed Consent

I am angry. Furious. Doctors seem to have forgotten what Informed Consent is.
I can tell you what is Isn't- we have lots of experience with that. Every time the kids went to the doctor, the doctor would come in, check stats and vitals, took our questions and as the doctor was in the process of leaving the room and ending our visit, they would say- Oh baby is X months old so Baby gets these shots A, B, C, D. We'd get a piece of paper on bullet points on the vaccines and their benefits.
Never Once- Never Ever- did they say by the way these shots have been known to cause seizures, shock, behavioral problems, autism like symptoms. They barely told us what the vaccine was for. And stupid us, went right along and went with it. Ok Charlie, no problem, we're modern parents who don't believe this anti vaccine movement. Until ASD was found in our home.

I have a MBA and I'm too stupid to go do my own research. I blame myself. Of course I do. I blame big Pharma, I blame our government for not doing anything about what is in our vaccines. I went along and blindly vaccinated and overtaxed my baby boy's system and now he's facing a life time of struggle to overcome those freakin shots.

Why haven't they ever done a study on side effects of getting all these shots all at once? We have side effects of each individual shot, not of all of them collectively being injected into our babies muscles. Why are they finding RNA in spinal fluid and in the brain? Why are titer levels so high in kids with all sorts of symptoms like OCD, ADHD, Anxiety, Behavior Disorder, ASD.
I have been doing a lot of research on vaccinations, getting ready for the girls 12 mo well visit. Hubby and I have talked and talked about the vaccines. We can either vaccinate the hell out of them like we did with JD and maybe end up in the same boat as we have with JD. Or we can avoid vaccines and hopefully end up with 2 neurotypical girls. I hope it's not too late, since up until their 9 mo visit, they have been vaccinated on schedule. What did I finding my research? A lot of information that makes me uneasy. How much toxins are already in my babies systems and are they still okay or was anything triggered during the first 9 months? I don't know.

So what do I know?  I did NOT give informed consent.  I was NOT informed. And I am angry at the doctors and at myself for not demanding it from the doctors.

Some good links:

http://www.vaccineethics.org/issue_briefs/consent.php

http://www.nvic.org/

http://www.cdc.gov/vaccines/vac-gen/safety/default.htm

http://www.chop.edu/service/vaccine-education-center/home.html

Special Needs Ninos Hispanos

There was an article recently about Latino special needs kids having late diagnosis or getting help later than caucasians. Here's my theory on why our kids get diagnosed later- they ask their families. Do you know what happens when you ask your Spanish family for their opinion? Everyone knows, everyone has an opinion and theory.

5 things can happen: 1) Norma's aunt's niece's youngest cousin was like that and now he's 30 and married and working and he's normal. 2) He's just a baby, all babies do that. Forget the fact that the baby in question is 10. 3) Just give him some yerba buena or te de tilo. (or whatever herbal remedy is really big in your Spanish fam.) 4) You need to go to church more often, we'll start a prayer chain. Someone must've given you the evil eye. He should wear something red. 5) There's nothing wrong with him. He's my boy and nothing can be wrong with him. (Machismo is alive and doing very well thank you!) I kid you not- all of these are personal experience. Ok slightly exaggerated, but not by much.

But if you look at all of these excuses individually, you realize that the denial is very typical and completely normal. Who the heck wants their kid to be diagnosed with anything? And when we run to our family for their opinion, whether we choose to admit it or not, we are seeking reassurance. And yes, we even want to be lied to and will grasp these herabl remedies, long lost relatives of years ago, participate in the prayer chain, agree that your 10 year old baby is perfectly fine. All parents go through this phase. Some Latino parents live in denial for years-- thus the later diagnosis. Other Latino parents simply don't know where to ask for help or to fight to get services. They chose to live in ignorance of what ASD is. Don't believe me? Here's my proof-

My mom's friend has a grandson who's about the same age as JD, 3ish going on 4. Grandmom is worried about her grandson. Grandmom is the caregiver during daytime. He has trouble transitioning, aggressive/anger issues, doesn't respond to his name at times, sometimes doesn't seem present or engaged. I'm no expert, but as a mom- that would be reason enough for me to consult an expert. Instead his mom feels he's perfectly normal and all kids act like this. I'd like her to define "normal" for me and for her to explain how a 3 year old apparently zoning out during a visit is "normal."

Another story- a 10 year old acting out in ways expected of a much younger child in order to get attention, deliberate destruction of blanket or throw. I'd be running with my child to the nearest psychologist for an evaluation. What 10 year old willfully destroys something? A little anger?

Somebody else's friends kid is 4 and is just now going to get a Speech evaluation. What part of missed speech milestones did you not understand dear parent? And on what part of the planet is a 3 year old with no speech or willingness to speak normal development? We took JD for a speech eval just shy of 3 because we had a loss of skills around 2 and 1/2 years and it coincided with when I had the twins. We opted to wait until 3 so that we could go right to preschool intervention program since it takes a couple of months to start up the services.

Is it ignorance, denial, laziness, love that causes the late diagnosis in the Latino community? I don't know. I do know that it doesn't surprise me. I bet you those parents are waiting for their kids to outgrow this stage- which is classic denial. We need to increase awareness on ASD and other developmental delays, other special needs- in all ethnicities. Greater awareness is never a bad thing.

ASD Diagnosis- nothing new here, old news!

 On Wednesday afternoon, on our way to therapy, we got THE CALL from CHOP. We have been on their wait list for their pediatric developmental department since October 2011. Last minute cancellation meant we were next on the list. Could I make time and was I available for Thurs at 8:45 a.m.  Heck yes!! Problem- he had a 2 p.m. eval/intake for the Center for Autism. Pull up your big girl panties, it's going to be one of those days!Yesterday, JD, Hubby, and I, spent all day at evals.

At CHOP- no miracle. I didn't expect one. Maybe some of the extended family hoped for one, but not us. After the eval plus an hour of waiting in this patient room for the pediatric doctor to come in and meet us- BTW she was there maybe 5 minutes before she left us with the other 2 doctors who we'd already met with. Wasn't impressed by her. She didn't listen, she just wanted to hear herself speak and treated our diagnosis as an everyday occurrence. I get it- for her it is an everyday occurrence. 1 in 110, 1 in 7. Clearly an epidemic. So yes, an everyday event for her. But this is my child- he's important and he counts. A little respect for our time would've been appreciated. But I just chose to let this battle go. Anyway- back to after the eval;

Diagnosis:  Autism AND Developmental Delay.
Tested at or below a 2 year old level.
Mild- moderate ASD

Next step is genetic testing. Immediately I fear for my girls, even more than before. Good news is nothing has changed since December's eval by Early Intervention. The surprise and up for debate is the Cognitive developmental delay. And what happens if his developmental delay never catches up, regardless of all the therapies? What will 10 years from now be like?  Or when we're in our 70's and he's 30? What will the delay be?

At McDonald's before our second and final stop- there was an older man with a vacant stare sitting at one of the tables with an aide. She was eating lunch and he was sitting in front of her, staring at a wall. Another older lady, clearly with them, was sitting at the next table eating her lunch. I saw the elderly gentleman and wondered- will that be my son? As quickly as the thought went through my brain, I rushed back into the moment, and focused on feeding JD. I can't afford to think about the future. But I can't afford not too, because we need to draft out a trust and will for him.

I do wonder- do most 2 year olds count to 50 and can they do so by 5's? Can they read 3 letter words and start to spell them? Can they memorize books and retell them? Can they memorize scenes in their cartoons and retell them? Because I see these amazing things my son can do, and I don't see a cognitive delay. I see other delays, but I assumed they were all ASD related. The speech, the clumsiness, the behaviorial. Cognitive? I never worried about the cognitive because I have always felt he was a very bright kid who just couldn't verbalise or who couldn't stay still long enought to want to do some of the tasks they were unable to get him to do. He didn't feel like drawing shapes yesterday. He is capable of it, he does it at school. His teacher and his therapists don't feel there's a cognitive delay. But today for some reason there was. I dunno.

I have to let this go, I do. Inside I am crying. The image of the elderly man at McDonalds and I see what could be JD once we're old or if we're dead.  And if my girls are neurotypical, they have this responsibility to act the part of his guardian. If I stop to think about it, like now, I feel myself losing control. Today I am once again the ASD mom in the cage screaming. Glad I have so many things to do today before the girls birthday party tomorrow. Off I go to pick up the tot!

At least this diagnosis allows him more services. One moment, one day at a time in Twingleland.
For my own sanity- I need to take one day at a time and hope above all, that our love and dedication will be enough. That I stay strong and fight and push to get him what he needs.

Disclaimer for the Thin of Skin

At the request of my hubby, to keep the peace among the natives of Twingleland and since I don't have time to BS- here's a disclaimer;

All characters appearing in this work are fictitious. Any resemblance to real persons, living or dead, is purely coincidental.
The wording of this disclaimer differs from jurisdiction to jurisdiction, and from country to country, as does its legal effectiveness.

See the family and friends on Saturday who choose to help us celebrate the BOGOs 1st birthday. I don't have time for others dramas, or to feel any compassion for others misplaced thin skinned feelings. Insert eye roll please.

Meltdown City

Today JD wiggled out of his booster seat during a meltdown in the car. He ran up the middle of the van and made a wild grab for the steering wheel. I slammed on the brakes and tried to keep a hold of him one handed while I tried not to have a heart attack. Instead, I screamed at him at the top of my lungs. Yes, the words, "Scared the shit out of me!" came out a couple of times in distinct yells. So there we were in full meltdown- hitting, kicking, doing the banana wiggle in the middle of the parking lot, in the middle of a lane. Not even in a parking spot. Not my finest moment in handling stress. Honestly, if I could have, I would've left them in the car and gone off to cry. But I sucked it up and was a mom and just let him cry it out until he calmed somewhat. I redirected somewhat successfully. But honestly it wasn't until he was good and ready that we got moving again. Can't say how many people honked or turned to stare. I think at one point I flashed the crowd in the patio of a restaurant when JD pulled it down. Don't really care. Hope they enjoyed the free show. Because we sure did give them a show.

The lowest point, as I am strapping him into the booster and using 2 seat belts in the back row to kinda Mickey mouse a way to keep him strapped in long enough to drive us home, JD says as he's cries his little heart out, doing the ASD high pitched screams, and tugging his hair, slapping his face- "Mami, I sick, I sick." That I cried right along with him. Knowing ASD snuck into my house is hard. Knowing he's aware of it and that his own body is out of control- the pain is indescribable. This pain for my son- this hurt, it will never go away. I will never accept ASD in our house.

Came home to a whining and fussy Cate. I think a couple of teeth are coming in. Her poor little gums are swollen. No kidding this kid has cried since 5 pm and it's now 7. She's stopped off and on, but nothing is stopping it. Not the frozen teethers, advil, teething tablets, washrag. One of those days where I will be crying my little heart out in the shower once everyone is asleep. Tomorrow is another day. Today beat me and my kids up pretty bad.