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.

The BOGOs will be 1

My twins will be turning 1 this week.  I'm very emotional. Mostly just relieved that we've made it out of newborn infancy in one piece. Because wow has this past year been incredibly draining. But I am also sad because they are my last babies. I will miss the newborn cry, the 1st smile, the 1st everything, but especially just that butterfly feeling of a baby move inside you- there are no words. Blissful Wonder & Utter Joy- the closest I can come to describing it. Do I have baby fever? No! Are you crazy? It's more that I want to have the possibility of future babies. Does that make any sense to the moms out there? I know the dads won't get it.

My hubby does not want any more babies. He only wanted 2. So my #2 +1, the BOGOs are it. He was fine with 1, but when both our sisters showed no possibilities for having their own kids, and thus no built in family for our supposed singleton, he conceded that 2 would be ok. That way they'd have each other when we are long gone. Then surprise- BOGOs. I was pleased, he was worried. Hubby is an anxiety stress filled person- he's a worrier. For him, there is no negotiating on more babies. He's probably planning his vasectication right now as I write this.

Both my pregnancies were high risk. With JD, I had high blood pressure, pre-eclampsia, and in the hospital I developed HELLP. So JD was born just shy of 37 weeks and had severe jaundice. We spent a week in the hospital. My twins pregnancy- just the fact that they were twins alone made it high risk. Toss in my experience with JD & health factors- wow they watched me like a hawk. I spent in total 3 weeks on some form of bed rest. In the delivery, I really thought I was going to die because I was hemorrhaging so bad and I only made it to 35 weeks with the girls so I was worried they'd need the NICU. We got lucky with my Achalasia- I was able to eat well throughout the BOGO pregnancy. But that's exactly how we feel- we got lucky. And I am not willing to chance a 3rd pregnancy. What if our luck runs out and 1) Achalasia is worse and I can't eat properly, 2) What if I develop pre-e earlier and something happens? 3) If something happens, where does that leave my 3 babies? So for me, that's why no more babies in Twingle land. Besides, if we had more, it would no longer be twins and a single land would it? I'd have to rename my blog and Facebook page!

Maybe no more babies is ok- this past year has been difficult. Being a stay at home mom to baby twins and a 2 yr old boy is hard enough. All the therapies and evals of this past year, the emotional processing of this past year- I am at my limit. I really think I would be overwhelmed and insane with another baby right now. Plus I don't think I'm a great mom. I really don't. Surely a great mom would have more patience, more ability to multi task, would just be better at this than I am? Only great moms could handle more than 3 kids. And in order to be a great mom to my 3, I don't think I could have more babies right now. We'll be celebrating with cake this weekend- the guests will be celebrating their 1st birthday, but me- I'll be secretly celebrating surviving the 1st year living in Twingleland! But I'll probably cry a little that night as I write the girls their birthday letters.

Message to the Loser Relatives from an Angry Mom



this picture borrowed from:



Are you a loser deadbeat relative? If you're wondering, you probably are. You know the ones I mean- the ones who you see peripherally a couple of times a year for brief visits or at funerals. The ones my kid refers to as that man, or that girl. Funny how it didn't bother me when we were kidless. But once my kids came- it started to annoy me. Then it began to infuriate me. At some get together- his apathetic grandfather saw one of JD's friends and mistook him for JD. Yup, didn't even know his own grandson. That right there, shows you what type of man we are dealing with. And if you're reading this and wonder if I am referring to you, then I probably am. And if you're still not certain, come right out and ask me, I'll be more than glad to set you straight. Because since I've had kids, I realize both sides of my kids family have absentee self involved and immature relatives.

Back to the who's-that-man-grandfather, the winner of loser relatives in our family: I guess I shouldn't be surprised as he was an absentee father at best. In fact, his total absence in his son's life might have- no Would have been a blessing. At least from what I have heard and from my viewpoint as a Mother and as the wife to that little boy who lived through it all. No way would I want this caliber of a man supervising my kids. Which brings me to this blog post. It is because I am now a mother, the person responsible for raising 3 children, that ironically makes me less forgiving, less relaxed about his sporadic presence in their lives. My husband will probably tell me this is a waste of my energy, that I shouldn't write it down, much less publish. See he's had a lifetime of dealing with his father so he is neither disappointed, saddened or angered- he's reached acceptance. I am more aggressive than that. In fact, writing this blog without mentioning names is my attempt towards passive aggressiveness. Certainly my feelings have been very vocal and my actions have definitely reflected my feelings in person. I am not a forgiving person, I will remember the slight and write you off of my life. I don't deal with negative self involved people- especially if they are relatives.

My hubby and I have been married for 8 years and since then we've each dealt with our own families whenever a problem or issue arose. By that I mean, he handled his side and I mine. In fact when the phone rings- thanks to caller id- we just hand over the phone. It's not personal, it's how we manage in-laws.  It's worked. But sometimes, ok since the kids, that agreement hasn't worked for me- for 2 reasons. My husband isn't confrontational, instead he'll try to pacify both sides even if he's miserable. Then unknowingly I get to deal with the brunt of it, because I live with him. I don't blame him for taking it out on me. I mean Who the hell wants to be the volleyball?

The second reason- it affects my kids. And I draw the line when it impacts my kids. Especially since JD's ASD diagnosis. He's a sweet loving boy and having ASD makes him vulnerable. He's very sensitive. My job as a mother is to protect him, that means I have no time to be polite or to stick to the unspoken agreement my hubby and I made when we got married. And now with the BOGOs- I don't want them to have someone in and out of their lives. The girls have seen this man 2-3 times tops since their birth and he lives less than 5 miles away. My son- the 3 year old, has seen him maybe 5-6 times. We can count how many times my kids have seen this man. And he's supposedly their grandfather! Am I angry?  No-  I am FURIOUS that he's such a deadbeat, so self involved, that he probably feels he's the injured party. And meanwhile my kids are deprived of a grandfather.  How sad- the epitome of loser relative.

Here's my stance on loser relatives who SHOULD have a greater involvement in their grandkids, nieces, and nephews, insert the relationship of choice here, this post applies to all loser relatives- you're either an involved relative, a part of our lives, who doesn't confuse a friend's kid for their own grandkid, who knows the preferences and dislikes of the kid, who has bothered to spend more than 2 hours a couple of times a year with the kids to really become a familiar face, or you're out of our lives. I will write you out of our lives. You will not invite yourself to events, or promise to show and then don't ever come, only to mail a "feel better about myself" check, gift, or card in the mail. YOU are either IN, or I will move heaven and earth, get in your freakin face and make sure you are OUT and know that you are NOT welcome or missed. My children will not have infrequent visits, regardless of living out of state, my children will not be alone in a empty apartment at night wondering where their MFin loser relative is. Because I am the Mom- therefore the gatekeeper. I will shelter and protect while I can.

Guess What Loser Relative- yes, I do mean you- It is not my job or my husband's job to make it freakin easier for you to visit. WTH? Grow up and get a set will you? Damn right I'm mad, you have no idea how much patience it is taking to not drive over or pick up the phone and tell you off. But that is too much effort to use on a loser relative who isn't Family. My kids have a family- one great grandpop, two grandmoms, one grandfather, some great aunts & uncles, some aunts & uncles, some great cousin & counsins we may not all be related by blood, but we are a Family in all the ways that count. My kids have family that hasn't met them because of immigration issues, but they're still involved! Because they have chosen selflessly to be involved.

In closing, dear loser relative, either change your ways, grow up and become involved, hell pick up the damn phone once a month, or you will simply be out of my kids lives. But don't ever think that you'll find forgiveness or for me to forget the caliber of a person you have shown me to be. And don't blindly tell yourself that you're the injured party- poor lonely loser relative who has been wronged. Maybe at the bar and with friends that may fly, but not here in Twingleland. And if you're uncomfortable being an adult and making an effort to visit this foreign hostile land- well it's not my fault you're a loser.

Sincerely,

One Pissed off Mom

No thanks, all done.

We rushed across the city to Bala Cynwd yesterday for yet another psych eval for wrap around services. You'd think all of these psychologists would get together and coordinate with the other agencies so we moms didn't have to take our kids to so many evals. Can't we have a 1 stop shop type of place that coordinates the PCA, BCS, TSS, and whatever else I may have forgotten- like a Wal-mart for intervention services? I fill out the same stupid questions on each of these forms, every time someone asks about my pregnancy and birth story- it's like another cut in an open wound. I already blame myself, I don't need these constant reminders. I rush there and make it there in close to 30 minutes. I reach for my purse and realize, I rushed out without my wallet. Thankfully I had my insurance card in my back pocket. But I had no id, no cell phone, no money.
We sit in a rather dirty dingy waiting room with toys that make me want to reach for my hand sanitizer. I resist the urge to take out the Lysol wipes and just try and keep JD from tearing up the room. My foot is throbbing again and JD is having fun exploring. We waited about 30 minutes and are taken in to the "consult" room or whatever they call it. It's the room where the psychologist will evaluate Josh. It lasted about 30 minutes and I answered the same questions that I answered on the questionnaire the night before. WTH?  Meanwhile I'm trying to keep JD from hurting himself, the psychologist, and anything in his path. Makes no sense to me- you know we have an ASD child, obviously this little round table room discussion is not going to work for us.

And why do you want to know if it was a normal pregnancy? Or if there's history of depression or anxiety in the family- and do you mean diagnosed or the diagnosis hubby and I make just by observation? What do you mean you want a copy of his diagnosis. As a psychiatrist shouldn't you suspect the ASD diagnosis based on your observations. Have you noticed my kid has yet to greet you. In fact told you to "Go Away." and then proceeded to run around the table stimming? Yelling or talking loudly, repeating your questions over and over again-- he is NOT deaf. He had a hearing test. Do you want a copy of that? \

Yes, I think we need wrap around services. I want anything that might penetrate the ASD monster. Yes, I might have noticed he's verbal. He's only my son. He's in this room with us, can't you feel him patting your back? JD is bored and I am resentful of another eval that makes me feel like sh#t and a failure of a mom. Thank you for pointing out all of my son's quirks, delays, and "issues." I am in fact aware of them. Here, I'll list them for you and spare you the effort to communicate them again. At the end of what I call my ASD verbal diarrhea please don't blink or give me a pitying condescending look. Here goes, read at a fast clip with brief pauses for breath, it's easier said this way-

My son speaks at a 2 year old level, receptive skills seem to be at his age, his has motor issues so he can't jump, has trouble on steps, can't tell when his mouth is too full, has a hard time eating on his own, isn't potty trained, bites, kicks, hits, screams, doesn't know how to greet or play with kids his own age, doesn't like groups of people talking or singing, actually no one can sing, he's an explorer so all outlets must have covers, all windows and doors must be locked, safety gates on all steps, windows on the 2nd floor must have a security screen in case he decides to bang and press on the window. His drawers must be childproofed (that hasn't gone so well), all breakables and low hanging shelves in his room are removed. The bedroom lamp has been removed after a minor burn and throwing incident, his closet needs to be locked. No wipes can be left in his room- or it will be strewn all over. Some books might not survive. He must be locked in his room or otherwise I shudder as to all the dangers he could cause while we slept. He has sensory problems- hot isn't always hot, cold isn;t always cold, no stickiness must ever touch him, if it's spicy he will love it. If it's beef- he will gag. Something must always be chewed or be in his mouth. A hot wheel must always accompany us in the car. Sometimes 2 or 10. The collection must accompany him to all places all day and must be taken to bed that night. Otherwise you will find yourself looking for a "Tata car" or "Baby car" or whatever he calls it late at night throughout the house, until it's found.
He's hyperactive. He regressed at 2-2.5 yrs old. Yes he freakin regressed. I'm the mom, I would know. He used to speak more, he used to speak in Spanish and English. Now we're lucky he speaks a string of 3 words in any language.

I know all these things. My heart bleeds for knowing all of this, because to us, this is every day life in JDland.
And now so do you. Pardon me if I don't thank you for making me rehash something painful. To me, and I imagine to most ASD parents, evals are painful. They force us to see that what for us is normal and common place is actually not the norm. That normally a 3 year old does not bolt onto the street or gag on his meals, or require being fed. I Freaking KNOW. Thanks for reminding me of this for the last 30 minutes though. Especially in your clinically detached yet fake  sympathy. We don't need sympathy here. As JD would say in his sing song way- No thanks, all done!

I have a son and twin girls to raise. Didn't you know? My son will go to kindergarten with his TSS and mainstreamed because I'm going to make that my mission impossible so JD and I can say mission completion and clap, clap, clap!

BTW- we got a recommendation for a TSS in school and home for 2.5 hrs each weekday along with a BCS to manage his plan. Huge help. WIN. Hope JD likes his new friend.

Save the house, clap! clap! clap!

I meant to post this yesterday but it got a little crazy with silly adults fighting and screaming. Then I had to fill out freakin eval forms for today's eval. Here it is-

 

        We are in the middle of an Little Einsteins marathon. I like the music so it's bearable. Actually all 3 kids love Little Einsteins. The house looks insanely cluttered and I can't see my dining room but hey all 3 kids are dressed and breakfast is underway.  I keep saying, I'm going to drop all 3 kids off at my parents and just come home and speed clean. I took the weekend off from cleaning, its never worth the aggravation of catching up. I still have to move the furniture and set up the tv in the basement. How come my to do list is never gone?

My dining room table is under there somewhere.

A quick recap of what's gone on since the last post:

• the hubs and I went to an all day ASD parents training. I learned a couple new things. Most of the other stuff I've kind of learned since the diagnosis. It's hard to figure out who to call and when to call to get connected with resources for your preschooler.
• Went to my 2nd IEP meeting, which really is our 1st with an ASD diagnosis. I called Parent Partners and 2 volunteers attended the IEP meeting with me to support and beef up my side of the table. It's a power game. Silly, I know, but there you have it. This meeting went much different than last. This one we actually negotiated and JD got ABA training along with a PCA in home. We also upped his OT. I left his ST as is because to be honest I don't care for the level of service being provided with ST, plus at Theraplay he does wonderfully with ST.
• JD is now telling me why he needs a time out and apologizes without much prompting. Making meltdowns not as long or frequent  and less painful for everyone. 1-2-3 is really Magic!
• Apple had her follow up with the hematologist. White count is back up, iron levels near normal. We need to keep her on iron drops and visit every 3 months for a retest. Fingers crossed we stay good.


• Sent out invites for the BOGOs 1st birthday. Having it at the house. And now our street is being torn up so the water department can replace old pipes. Nice warning- 1 day notice. From 7 am until about 3, we have a lot of heavy machinery and NOISE. So JD is walking around the house telling me it's too loud and covering his ears. Wonderful.

Going back to Lil Einsteins- we're on a mission to save the trees or something now. My life sometimes feels like a marathon of tot and twin activities. I'm a freakin taxi service and occasionally have to whip out a boob to quiet the BOGOs and in between I have to find time to be a housewife. Tired. The messy house is putting me in a bad mood. Sigh. Where's that maid?

My sink- 1 days worth