Fruit Roll ups, gloves, and baseball!

Baseball clinic was a success this morning! Sports and JD seem to be antonyms. We’ve tried indoor soccer, gymnastics, even a special sports meet up. To date most of his athletics have been demonstrations of avoidance and stubbornness. He's run away, he's ignored everyone & yes, he's even resisted help. Just like my emergency note on my doors warn.

Arguing in the car, arguing getting out of the car, cajoling once we got there. 1^st off it was loud and JD needed to get used to it. Ear muffs would've been good. He did it eventually! Yes, he was hyper and needed constant redirection. But he tried it! He participated! He loved catching. Not so much batting. He needs to be a catcher. Why?
JD: " I want to wear his costumer to school mom!" Catcher Gear! Oooh! 

My dad came, stood watching unseen. My dad was definitely teary eyed, I admit I had moments where I unabashedly dried my tears off my face. My dad gave me a hearty kiss on the cheek and hugged his boy. He might love his grandson more than his daughters. As it should be. Their love is a wonderful thing to see.

Playing ball may not seem like much to the outside world. For me, this is a phenomenal morning.A new activity where he participated and he tried. Sure I bribed him with fruit roll ups and ice cream. He did it, he tried! Huge! Proud mom. Too bad he’s looking like he’s a rightie.

BTW- The facility had the special needs baseball clinic free of charge. FREE! Yup! Tons of volunteers who donated time and effort to make it a great event. They had police motorcycle for the kids to ride, meet and greet with police officers, even a visit from the Philly Phanatic. What truly made this day special was seeing all those kids, some like mine, participating in a sporting event for the very 1st time. Seeing a boy in walking canes "run" the bases, seeing a toddler in a specialized seat wheelchair batting his 1st at bat-- special moments and an honor to witness. Watching my boy high five and fist bump with the volunteers and other kids-- priceless. Thanks, so much Sluggersville!

Heart broken

Would he have had blue eyes? Would he have had Cems dramatics and flair. Would she have shared Apple’s infectious giggle and smile?

I’m trying to keep busy today. I want to fall into a fetal position and break down. I placed a heavy duty pad between my legs, shoved my heart back into my chest and went grocery shopping with the kids simply to get out of the house. We came home and made playdoh. Let’s just say a whole bag of flour was used and my kitchen floors are now literally scrubbed clean. But they had fun and their smiles, their giggles, their mess, was solace to this mommy’s sad heart.

You know we’re fertility challenged and a positive pregnancy test, those sticks you pee on, are foreign to me and were completely useless with our IVF experiences. February and March passed without needing to break out feminine pads and my back didn’t hurt days before my aunt flo arrived I went “hmm, what can this be now?” “Where the Hell is Aunt Flo?”

I was cautiously excited. A positive stick pee test later and I giddily and rather nervously told my hubby over the phone. I took another test over the weekend and this one had a faint line but was negative. Maybe a faint sign of a vapor line for positive. Hmm, what the hell? You’d think they’d have come up with something that sings you a song and says “You’re fing pregnant for real” instead of sitting on the toilet and holding it up to the light and wondering “wait is that a line or my eyes wanting a line to show?”

This morning I woke up in pain and Aunt Flo showed up. 1^st time since January. Early January. After almost a bag full of pads this morning, my OB was called. She feels its most likely an early miscarriage, come in later for blood work and ultrasound to see if I need anything done to “clear up everything.” To clear up everything—all I see in my head are baby feet and toes.

Baby #4 may not have been planned, may not have been meant to be, but the mere possibility was enough to have me love him/her. The mere possibility was enough for me to hold my paunchy flaccid tummy and wonder whether it looked like a chicken embryo or if it resembled a tadpole. Last night I slept cuddling with my husband, his hand lying comfortingly, protectively over our pseudo baby tummy incubator. And I was happily thanking God for blessing us with a miracle baby.

I am devastated. Someone-- I don’t know who—God? Life? Whatever, anything, something, has kicked you in the stomach and pulled out your heart and stomped on it and shredded it too and then salted it for good measure. I am heartbroken.  

All about the Neuro visit

How to manage the fear? We’re going forward in our quest for a diagnosis for our Apple Doodle girl. She has the sweetest smile and the most infectious giggle and exuberant laugh. She’s been getting physical therapy since she was 3 months old. Since then we have added occupational and speech therapies. This week we went back to neurology. I think she was under 6 months old the last time we went there. I expected that he’d order an MRI. I did not expect him to say, “Yup, definitely have some motor apraxia going on.” You know, but you don’t REALLY know. Except now we do know, sort of. Now we need an MRI. For the next couple weeks I’m going to be scared sh&tless.

After he said “apraxia” I stopped understanding the neuro. Suddenly he sounded remarkably like Charlie Brown’s teacher. Some scary words were spoken: brain damage, apraxia, muscles working fine (wouldn’t we need a EMG for that?), brain function, lots of other “brain” something. As he’s grabbing his bag to go to another patient he asks: “Any questions for me?” Unfortunately we have to wait until after the MRI to get definitive answers. I’m picking up our coats and I’m wondering how I’m going to call my husband at work and tell him the news gently. Gently?!!

Manage the fear. Keep it contained. Keep it in the back of my mind and keep going. Fight back that fear. I have to stay strong for my babies and for my husband. Blink away the tears, take a deep breath, regroup, BREATHE for the love of God, and focus on the important things.

The road to a diagnosis is painful and it is just the beginning of the journey for my baby girl. This is not what we had planned for our babies. It is so very sad. The tears that flooded my eyes in front of the elevator were for my babies, not so much for me. The tears in my husband’s eyes weren’t for our sadness. They’re for all his fears for our babies. Take it one day at a time and never lose hope. It is all we can do, the life of a special needs parent.

Fairness & Forgiveness

Forgiveness and fairness are funny things. Everyone wants to talk about the unfairness of it all, whining about how unfair life is, blah, blah, blah. But no one wants to forgive anything or forget the lessons learned. Because if we forgive, does that make us the fool? No one wants to trust and be that fool again.

Yesterday I had to take my daughter to the neurologist at CHOP. You see a lot of sick, and I mean really sick, kids on the elevators. Passing a full lobby of bald babies is sobering. You know what I realized? If you don’t forgive and move on, you’ll be stuck with that bad energy and it is toxic. I don’t want to be defined by the mistakes of others and the hurt they caused. I don’t want to be that bitter person who says they’re stronger for learning their lessons when in fact they’re being defined and shaped by others wrong doing & the past. Those types of people never seem very happy to me. If I die tomorrow, I want to die happy, surrounded by love and happiness. I don’t want to die longing for someone I once knew.

I am me, I am loyal, I am fiercely protective of those I love & I’m not afraid to speak my mind. I try to be fair to everyone, I laugh at inappropriate times during movies, I fall asleep reading a lot and sometimes I screw up. It is hard for me to trust again after I have been deeply hurt and its equally hard for me to apologize when I screw up. But above it all, I am honest. I don’t like liars.  If people don’t like my honesty, well that’s on them. I don’t play games. Ever. When people start lying and playing games, I usually decide that’s about the time I stop trying to keep them in my life. I don’t want that around my kids, they have enough challenges to face without adding somebody else’s craziness to it.

The IEP fallout

JD’s annual IEP was yesterday. I went in with 2 pages worth of new goals, no IEP draft, and rather unsure about his current school placement. I was also nervous. I don’t like going into meetings without having a game plan. It’s like dogs, they can smell your fear. Case workers can smell weakness.

Long story short, my kiddo is doing well and the behavior problems are because he’s bored, really bored. So in September we’re going to try inclusion. Now I’m not just going to throw him into a regular pre-K without support. No, we’re not ready for that and we’re taking baby steps. He’ll have his aide with him at all times. Hopefully it’ll be the same aide he has now because he loves her! He’ll also have a mobile version of his current team. He’ll have an occupational therapist, speech therapist, a behavioral consultant, and a special instructor to act as a go between the pre K teacher and the “special needs”. My understanding is that the special instructor will work 1-1 with JD to help with any problems that may arise.

I’ve been calling around some pre-Ks and was pleasantly surprised that pretty much all were open to having a kid with an IEP and support staff in their program. Now I know legally they have to. But we all know that doesn’t necessarily mean it’s a reality. The reality is that not all schools are equipped for it and not all schools are open to it. Now I won’t lie—2 or 3 have to “call me back” to see if JD having outside people (their words not mine) coming in would be ok. Needless to say those are now taken off my list.

This decision is not without misgivings. I worry we’re pushing him too fast. He loves his current team and has had such progress since last year. I am so incredibly thankful to his team. There are no words or gestures that could ever express my thanks. So he’ll stay in his current school through summer and then in the fall we’ll start a new school. Big step and I have to take a deep breath and pray. Some changes are good. Not all change hurts. I have to be open to it and continue to let JD show me what he’s capable of.  

http://www.youtube.com/watch?v=zbnJo88kuP8

Perfect World

In a perfect world:

I could afford to send my kids to the perfect pre-school that fits their needs- one that integrates so my kids have a chance to play with “normal” children, a place that provides play centered enrichment programs, where sensory issues aren’t deemed behavioral outbursts, where my child isn’t left sidelined while the others play, where the ratio was 3:1 and not 12:2.

 Everyone would have the best education and therapies available, regardless of income or lack of income. I could afford to work so that I could send my kids off to these great schools without fighting with Elwyn, reliable trustworthy daycare wouldn’t be so expensive, therapies would occur in school as stated.  IEP, arbitration, IDEA, all those other acronyms would just be common sense and not a long complicated process where you need a lawyer or advocate and countless meetings.

I wouldn’t worry about safety or need cameras in buses or classrooms. I wouldn’t worry about bullying, about abuse, about strange women coming into the classroom and kidnapping my child (oh yes, it did, right in Philly this week) or worry about someone showing up with a weapon forcing a lockdown at school   (nearby county also this week)

In a perfect world my kids wouldn’t need therapies and what not.  And this blog wouldn’t exist. SIGH. Would be nice.

Could be worse. . .

OT for A today. After OT I felt like a failure of a mom. I know the OT didn't mean to, but after that session I was depressed and just in a horrid place. Took the kids up for circle time/reading time and then naptime. Thankfully everyone went to sleep so I had some downtime. It was bliss. I didn't make any calls or read any notes or even check Facebook. I just didn't have it in me to read anything more Autismy or Special Needs. Gasp! Sorry Facebook ASD friends. I didn't want to read about my mom club's happenings. Double Gasp! I was really down. Clearly! Any day I don't want to chat with my mom's club you know it's not a happy day!

Then naptime is over. That quickly? I may have whimpered in protest, I won't lie. It'll be ok 2 hours until my hubby gets home, it'll be ok. Well the girls cried on and off again for the majority of those 2 hours, got me why. JD was manic hyper for those same 2 hours. At one point all 3 were back in their rooms crying it out while I paid the pizza delivery guy. Hey, no judgement! While I'm setting the table for our takeout meal, the girls are alternating between crying, whining, and clinging to me- this was how the conversation went;

JD: I want to watch a MOVIE NOW!
Me: You yell at me one more time kiddo and you'll spend the next 2 hours in your room with no tv, no toys, no mommy.
JD: No! Movie. (jumping, running, bouncing, giggling manically)
Me: Can you please be quiet? It's quiet time.
JD: SShhhh! SSH! QUIET! (finger over mouth)
Me: JD, please baby, 2 seconds of closed mouth and quiet. please?
JD: (in an exaggerated loud whisper) Sssh, mommy's gonna lose it, quiet sissies! (giggle) Sssh be QUIET! (giggling)
I looked over and he's shushing his sisters, as he's running around the 1st floor with a toy shopping cart running over his poor sisters who are crying because he's 1) stolen their cart 2) run them over with said cart. His eyes are laughing and he's got a big wide grin on his face as he exaggerates to be quiet.

This is the boy who a year ago wouldn't speak. What he did speak wasn't readily understood. Now I can't shut him up. And then my inner voice said, be thankful for what you have. Be thankful. It could be worse. Slow down and appreciate it. So I did. I gave up trying to finish the laundry, trying to clean the clutter. I don't even know what I was doing that was so important. I sat down and started laughing. Then I ended up crying on the sofa. Damned OT. I was having a good day until she came and gave me her feedback on some of Apple's eating "issues". My boy and girls came over and hugged me and that was the extent of my crying fit.

Like my husband said earlier tonight, it could be worse. I am thankful for how good we have it. 2 of my kids struggle with what most parents take for granted. My 21 month old baby said "Cat" very clearly yesterday. Today she said something that sounded like "There you are" and I celebrate the speech progress. She gained a pound and I celebrate that progress. My son is using proper pronouns for the first time ever, he sat for a complete 30 minutes of therapy session-- sat. Unheard of. I celebrate that!

But dammit, I hate that we have to celebrate these milestones, I wish we didn't need the damn therapies and evals and what have yous. I wish they were perfectly dare I say it, normal. I wish we weren't "special needs". Again, my husband is a freaking wise man-- it could be worse. Indeed, it could. My daddy, another wise man perhaps said it best, "he's [JD] is doing well. You're doing ok." And perhaps the best validation and the one I need to hear the most, "I love you lots mommy, I'm sorry I hit you. Don't be sad. Everything is going to be okay."-- JD.  Love that boy so much.