New After School Care

So how is everyone doing? Whenever someone asks me how I'm doing, I am programmed to say, good or fine. It's rarely true though. But I know this is a general greeting and it's plain acknowledgement of your presence.

These last two weeks have been complete mental exhaustion.  That means my nights have gone with either minimum hours of sleep, tossing and turning or staying up late which is not my norm. It means that I can be at work and trying to read reports or documents and not being able to focus, so reading over and over has also been causing headaches.  I just went through seven days of having vertigo in various stages. Of course the worst was not being able to get out of bed or the sofa, or keeping my head against the headrest as I drive and trying not to turn too quickly, to taking medication before the symptoms worsen, to finally waking up in the morning and being able to stand without missing a step. Whatever the case, I don't know if stress was a contributor.

But it seems that I may be seeing that light after all. One of Puppy's teacher aide's has stepped up to the plate and offered to watch him after school, but only Monday through Thursday. And unfortunately she mentioned it would only be temporary until I find someone or somewhere more permanent for him. I wasn't too happy about that, but it's a start. I'm just thankful that it will be someone dependable, responsible, and a person that knows him almost as well as I do if not better. Best part is that he respects her...or fears her, not sure--still, it will be a change and a new routine.

And Puppy is still trying to adjust to having his wallet in his pocket, or his hands when he thinks no one is watching.  He's showing progress in school in that he is still maintaining his workload and focusing without having the wallet consume his attention. He has returned to his study group and no longer with the babies so his confidence has definitely increased.  We still have discussions about him wanting to modify it with paper and/or tape, but whenever I stand my ground (so not what I used to do before), he has no choice but accept my answer and accept his wallet is the way it's going to stay. I always feel like the challenge is more for me than him. Weird.

Still Searching

I’m still in search of someone to take care of Puppy after school.  This has not been easy. I had received notice that a Teacher's Assistant was willing to take on the task, but here we are…Tuesday, a week after we his last meltdown at daycare; and no contact has been made.  I would be knocking down her door or making her phone ring all day if I had this information on her, but none was given; only she’s willing to do it. She has a funny way of showing me she want's the job.

I guess for now there’s not too much more to report.  Puppy is doing fine with his wallet.  He’s tried to modify it once by adding an extra flip-it like an ID pocket, but after going over the rules—it didn’t come with one, it doesn’t need one—he removed it. He's been rather calm because my boss gave me Wednesday-Friday off from work last week to care for Puppy myself because he understood it's not something that can be managed overnight.

And I know my postings are about Puppy, but I’m going to throw in that I have been losing sleep for days now, and I am grinding my teeth whenever I do get sleep. To make matters worse, I’ve had a case of vertigo for 5 days! Okay, okay I’ll stop complaining. I’m just so tired lately and I don’t see the light at the end of the tunnel. Lord, grant me more patience and strength to get through this bump in the road. Amen.

Now what?

I stayed home with Puppy yesterday. No,  he's not ill with a cold or flu.  Puppy had another meltdown hitting fist on table, pushing chairs, screaming foul language, and cause self-injury at daycare on Tuesday. So this time I was nicely asked if I had considered any other options for Puppy's after school care.

This week however, he was scheduled to be there all week for full days during his Spring Break vacation, which is for all schools around. This being said, there were extra kids at the daycare that normally would not be there, and the daycare had set up the entire week of events themed in western style activities. They had stacks of hay set up throughout the daycare and asked parents were asked to dress the kids in western attire all week. They were having picnics in the classrooms, dances, and a petting zoo set for tomorrow, Friday. Today, the older kids were going on a field trip to a park for a city wide fly-a-kite day, and Puppy was ready to go as well.

The daycare employee told me that she had spoken to Puppy's classroom teacher and she mentioned that she was now afraid of him and his tantrums, and mentioned she was concerned about whether she would be able to handle Puppy outdoors in the park along with other kids. To be honest, I was also considering asking the daycare to leave him in the classroom for the same reasons. There isn't a single staff member that I am aware of with any knowledge or background in caring for special needs children. The teachers have their basic CPR certifications and medical kits in the classrooms, but I don't think it goes further than that.

I don't know the complete details of the event, but I knew it was coming. We were lucky to have gone this far along with support from the daycare, 10 months! So the search has started and I'm seeking out a brave individual or probably a teacher aide familiar with special needs kids to hire for Puppy's care while I'm at work. The search isn't easy and because everyone is out on break, some with out-of-town trips, it has been hard to make contact. But for right now, I am glad to be taking a break from work myself and spending some time with Puppy. And right now, I think we'll go fly a kite.

He's Whole Again

Saturday morning was quiet. I could see the waiting was overwhelming for Puppy. Then finally, his teacher came over as scheduled and the process began.  She pulled out 16 wallets across our dinning room table. However, I want to just let you know that this was only a part of the collection which had grown to at least 25 wallets, but some had been thrown away and others are still in hiding. 

So she spread them out and asked him to examine each one carefully. He was to put aside the ones he liked away from the ones he didn't. The ones he didn't like will automatically be removed. The ones he likes are going through to round two. Done. He picked two from the stack. He was asked to examine those two and pick one. The winner would be final. No more buying new wallets, no more switching from one to another, no modifying his choice with tape or paper, and he will keep it forever. I know it sounds extreme, but I need to use words that are understood by him. And really, forever only means a long time. Probably only until he gets tired of it and puts it away for a rainy day. It can happen.

He made his decision, the Fossil wallet won! Now job number two for him is to pick and choose from this collection of credit cards and business cards and pictures. Puppy was allowed to fill the slits and pockets with only one item in each and not make it bulky with excessive cards.

And then the moment of truth...he slipped it into his back pocket. And the grin from ear to ear was so beautiful. It was magical. I held back the tears and tried to ignore the lump in my throat. An end to an old chapter, and a new one begins.

100 Days, Done!

Puppy had a terrific day yesterday (Friday).  Why? Because he was working harder than ever to complete his 100th day of good behavior.  With that behind him, his teacher will be coming over to our home this afternoon to return his wallet. The wallet is a large part of him; it completes him.

So because I am too anxious about today's event, I decided to share a piece I found from a facebook page I follow. Have a great weekend!

Single Mothers who have Children with Autism

‎6 THINGS YOU DON'T KNOW ABOUT SPECIAL NEEDS PARENTS.

1. I AM TIRED. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.

2. I AM JEALOUS. It's a hard one for me to come out and say, but it's true. When I see a 1 year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...

3. I FEEL ALONE. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2 year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.

4. I WISH YOU WOULD STOP SAYING, "RETARDED," "SHORT BUS," "AS LONG AS IT'S HEALTHY..." I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)

5. I AM HUMAN. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...

6. I WANT TO TALK ABOUT MY SON/IT'S HARD TO TALK ABOUT MY SON. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.

Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I'd come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.

It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should be's" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed.

- Maria Lin (via huffingtonpost.com)

Red Card, Green Card

Woohoo...Puppy had a super great day yesterday!

I'm leaving that sentence out there all by itself so it stands out. Something worked.  This time I'm giving credit to my sister-in-law Esmer.  We had lunch on Tuesday with my brothers and sister, and I was showing them the text Puppy's teacher had sent that morning detailing his meltdown.

It was pretty bad, too. He now has more scars on his face from scratches and punches he gave himself. Here is a direct copy of the text I received from his teacher afterwards.

"He started with bad words again. We got to hold his arms before he tried to scratch but then took the opportunity to try and bite his upper arm that was close to his head.  He then knelt and was trying to bite us and when that didn't work, he bit a piece of his pant.  He spit on the TA, kicked me, scratched other TA and then spit on the rug.  This went on for about 50 min. There wasn't anything that was said to him.  Each time we would try to let him go he would try to scratch himself.  Both securities, Asst. Principal had to come in as well b/c he was yelling and crying. He was also trying to hit his head on floor. He was trying anything to hurt himself."

I spoke to his teacher and we talked about how he has been having increased anxieties, but they are directed with her in mind and he is seeking her approval for every action he is doing. Whether it is doing homework, chores, showering, going to bed, feeding the dog or just sitting at the table, he will ask..."Is Ms. B happy?" Strange part about it is that even if I answer "yes" he doesn't believe me, go figure.

We discussed that home visits improved his behaviors but it seems like he is nervous about her dropping in unannounced and catching him in the act of misbehaving. So we threw that idea out the window.  I suggested that maybe a phone call from her before bedtime will give him the re-assurance he needs to know she is happy.

So all this happened before lunch time. Then after talking with Esmer she brought up the idea of sending a color card such as GREEN for happy and RED for unhappy so that he didn't have to guess. I sent a text to his teacher and she agreed with us that he might just be needing a visual indicator to calm his anxieties. So the first colored paper came home. In his communication folder was a RED paper. But I think that he misinterpreted to mean that his behavior was so bad it required a red card. He may have remembered we used colors to rate his behavior in the third grade and at my parents' during the summers a few years ago.  So this RED card made him nervous because now he thinks his teacher is angry that he got the RED card to bring home.

In the morning, he was still as nervous as when he went to bed. I went to pull out a GREEN construction page and wrote on it, "Eloy at home - GOOD".  Now he needed to take this back to school and show his teacher he had no tantrums at home the night before.  I sent her a note explaining the switch of the meaning of the cards from her to him. Well it worked like a charm. He worked towards getting that GREEN card to bring home.  Home is where we are keeping count of the good behavior days until he can have his wallet returned by the teacher.  He needed to get 100 points and with this GREEN card he is at 98 as of March 7.  He has turned around and is so excited to reach 100 points that he was radiant with joy this morning. That's the beautiful young man I love to see so happy. I'm so glad we found the right medium to communicate with him before it was too late.

It's gotta be the moon

Oh Puppy.  So much is going on these days that I have been trying to concentrate on him and not so much on updating my blog. He's definitely going through something and because I can't figure it out, I am turning to the one thing that other autism parents also believe.  It's the full moon!  I know it's silly, but at least I have an answer to what is causing the meltdowns Puppy has been going through.  Technically, I don't think there was a full moon on the 21st of February, or the 22nd, but there's one tonight and so there you have it. It's the moon!

I'm stumped. But mostly I just want it to stop, for it to all be over.  I don't like seeing Puppy going through a period of regression, because that's what it seems like.  He's gone back to causing severe self-injury and frankly, it scares me.

Lord, please get us through this like you have so many times before.