Thursday, May 30, 2013

Disneyland Firsts

We went to Disneyland with the boys for the VERY FIRST TIME and this is what they had to say:



As the day went on, Elijah's word "Disneyland" got clearer and clearer. Although it sounded a little more like Di-nee-lan, it was SO fun to see him mimicking more and more in regards to speech. He got a second wind at Disneyland later that day and would toss his arm in the air and gleefully shout, "Di-nee-lan!!!"

The day was magical, and I can't wait to share pictures and stories from our first ever trip (with the boys) to Disneyland!!

Wednesday, May 22, 2013

Preschool, Meningitis and thoughts on being the Squeaky Wheel

The week started off rough. I took Elijah to his newly assigned preschool, with his new teacher and had high hopes for the class. I stayed for about 30 minutes to help Elijah get acclimated, but quickly saw that there is no way that this class or the teachers provided for it, could possibly help my son physically navigate the classroom and grounds as much as he needs it. He's not independently walking yet, and once he is, it will be unlikely that in the beginning he will be strong enough to walk throughout the 3 hour preschool day. I left that day, feeling very anxious and came back to pick him up and talk to the teacher at the end of the school day.

While I was speaking to the teacher I saw another little boy with Down syndrome, crying and crying with snot running out of his nose while an aide tried to walk him to the bus. He wouldn't walk (he looked exhausted to me), but she kept saying (gently), "Come need to walk." But because he wouldn't, she would just drag him hanging by his wrists a few steps. Then the same thing over and over. I turned to Elijah's teacher and said, "That is NOT okay!!! Children with Down syndrome have low tone which can leave them with weak shoulder girdles. That boy could dislocate a shoulder being "walked" like that! Under no circumstances should Elijah EVER be walked that way. If you need to let him crawl within the classroom, fine. But under no circumstances should he ever be walked like that." She told me that she understood, but that she would be unable to help Elijah much physically, as she has a bad back for which she is undergoing physical therapy (an injury due to having to restrain a child from hurting himself). She mentioned that the teacher's assistant also has back problems. There are three adults in the class room, so that leaves the surly looking aide, who couldn't appear less interested or suited for her job. All I could think is How can I leave my child here??

I was concerned about the class structure, because from what I had seen in class there was a LOT of patient waiting that was required of them (20 minute snack time, walking and waiting together to go to the bathroom, have hands wiped down, go to the library, etc), a 40 minute circle time and in the times I visited I saw no indoor, classroom playtime. I asked the teacher about the amount of waiting that was required, and she assured me that the kids were not able to do it when they first came into class, but now can. (That wasn't really why I was asking, but I can understand to some degree why learning to sit and wait patiently could be important. Overall, in preschool, I find it developmentally inappropriate.) I asked her if there was any free choice inside the classroom playtime for the kids. She got a big smile and said, "Oh, yes! On Fridays!" It took me a second..."On Fridays???? JUST on Fridays??!" She responded, "Well, yes. We used to do it more often, but the kids were throwing the blocks and making such a mess and I need to have control over my classroom, otherwise it's just daycare." I get it. I do. It's not for me or my child, but there are parents out there who might prefer a strong structure like that for their child. Mine needs to be able to put his hands on things and experience how they work, to learn to socialize and pretend play, and to learn in a way that is more "across the board" than just sitting in a cube chair staring at a white board/chalkboard that I'm not even 100% sure he can see!

I left the school crying. When Christian started preschool I cried too. But, I cried because he was growing up and gaining some independence and needed me just a little less. With Elijah, I was crying because I don't feel safe leaving him there. It's a terrible feeling that no Mother should have to experience. I decided that since it isn't safe for me to leave Elijah at school, I needed to pull him out. I intended to go to school to find out when his therapy sessions are scheduled and then only bring him to those sessions until the emergency IEP meeting is scheduled to get him a new school along with a one on one aide. I walked into the office where the two surliest looking set of office staff I've ever seen, were working. (Surly is the only word that comes to mind. I know...I KNOW that these women's jobs are demanding a lot out of them and that they have parents coming at them from all directions, but I have toured a LOT of schools by now and this crew is particularly sad.) I told one of the women that I needed to find out when Elijah's therapies are scheduled for. She told me she would have to call me to let me know about physical therapy, but the speech therapist was on site that day. She grunted in the direction of the classroom 1/4 mile away. We walked down there, Elijah in my arms, knocked on the door and no answer. Knocked again, no answer. By the time we walked back, I was done. I asked the office staff to please call me with both the speech and PT info when she has it. She called the speech therapist and said to me, "Well, she's there, so you can just walk back." I looked at her, with a struggling Elijah in my arms and said, "I don't have time to walk back there now, I have to get my other son to school."

The office staff woman finally connected me by phone to the speech therapist, who sounded friendly and knowledgeable. She told me she picks all of the kids up on Wednesdays around 9:30am. Something she said set off an alarm bell in my head. I said, "Well Elijah is scheduled for individual speech sessions." And she replied, "What? I've never had a child at this particular school in 22 years scheduled for one on one speech. Did you go to due process?" More alarm bells. I said, "Well, it's in our IEP." She looked at the IEP and said, I don't see it listed here as individual." Heart drop. What???!!! My heart starts racing and my mind starts spinning through what I signed. I told her I'd get back to her once I looked into it. I grabbed the copy of the IEP I had in my purse and looked it over. I specifically confirmed The PT is one on one, right? and got a yes response from the IEP team. So I looked at the language written into the IEP (which is greek to me), it says: Direct Service (Collaborative). So, I scan my eyes to the Speech service says the same thing. So, if one is a group service according to the speech therapist at the school, then they both are. I'm pretty sure my blood began boiling at this point. I asked over and over in our meetings if they were offering individual service for Elijah, one on one, not group and the answer was always yes. I need to do research into what the initial IEP papers that we didn't sign said, and see if they are different from what actually got signed. I went home immediately and contacted a lawyer who works specifically on special education cases.

Then this happened.


I woke up in the early, early hours of Tuesday morning with an intense headache. One that woke me from a deep sleep. I wrote it off thinking weather changes, the glass of wine I had, who knows? I took some Tylenol and went back to bed. In the morning the headache still wasn't gone, the Tylenol hadn't done much. It felt like an extreme pressure in the front of my forehead and the base of my skull, near my neck. It was intense and although I rationally knew my head couldn't physically explode, that is what it felt like. I've never had a migraine, so I thought maybe that's what those are like. I continued on with my day, but by the time I got to teach my ballet classes, I got out of my car to walk and my whole neck was stiff. My back felt like it might go out at any moment, so then I thought that maybe I just have something seriously out of alignment and was thinking about how I could get an emergency chiropractic appointment. I went in to teach and my symptoms started changing. I started getting fever chills and feeling a little woozy and that's when I knew something was really wrong. I told all of the girls to keep their distance- it might just be a migraine, but just in case it would be better to hang back from me. I hung in for a couple of hours and then knew I needed to get home and get to bed. Of course, Charles had just left to go out of town on business that morning. I called my parents to let them know I was really not feeling right and to call and check on me in a couple of hours.

Through the night things got worse and I woke up early wondering how I was going to get out of bed, let alone get my kids up, dressed, fed, lunch made for Christian, and off to school. After a bunch of phone calls, my Dad saved the day and got to my house, got the boys dressed and took Elijah with him while he took Christian to school so that I could get to my doctor at the nearby Urgent Care Center. She looked me over, took a urine sample and said in her motherly/doctor way, "Sweetie. I need to send you over to the ER. I'm worried this is Meningitis. They are going to have to do a spinal tap and some blood tests on you to find out." I called my parents, texted Charles and drove myself over to the ER. Apparently when you write "Doctor Suspected Meningitis" on your intake form it is your ticket into the ER FAST. You know...just don't say you heard it here. ;)

Within an hour, I was hooked up to an IV of antibiotics as a precautionary measure (if the tests came back as a diagnosis of bacterial meningitis, a heavy course of antibiotics would be required, as it is a life threatening illness and is the kind of meningitis that you hear all of the scary stories about.) The doctor asked me a lot of questions and gave me that skeptical look that doctors sometimes have- like maybe you're just a big baby and making it all up. He said he didn't think it was meningitis, but he'd been wrong before, so they were going to have to do a spinal tap and run some blood tests.  The weird thing all along is that even though I knew next to nothing about meningitis, my instinct kept flashing Meningitis- even from when I woke up that very first morning with the intense headache. So, although the ER doctor wasn't thinking it was meningitis, my gut was. I signed the paperwork and got prepped for a spinal tap. Luckily my best friend, Denise, and friend Randee were at the hospital to make me laugh and be my support.

My friends were ushered out of the room, and the doctor began to explain the spinal tap procedure. I'd had an epidural with my first-born son, so I knew what it was like and wasn't that worried. He explained the risks and the unlikely-hoods, and talked me through each step. I finally just said, "I pushed a baby out without drugs, so I'm really not worried. Just do what you need to do." Halfway through the procedure I began to feel woozy, and the nurse said, "Okay, let me know if you feel like you're going to pass out." I said, "I think I'm going to pass out." The nurse hooked me up to some oxygen and held me firmly. I didn't pass out.

The tests results took a couple of hours, and I was required to lay flat on my back to be sure that the spinal fluid could reproduce (?). The doctor came in later with the news. He said, "Well, it does look as if you have a mild case of viral meningitis. Of the kinds of meningitis to have, this is the good kind. Unfortunately, since it is viral, it means there isn't much we can do to help you except to help manage the pain." I was released and my Dad took me home to collect my stuff. Thankfully, the boys and I would be able to stay with my parents while Charles was gone, so I had a little help getting healthy again.

Within 2 more days, I was feeling like me again. By the weekend, I was feeling completely antsy to get out- which timed perfectly with having one of my events to run. Now, I'm back in the swing of things and working hard to figure out this crazy school district system. I'm frantically researching our options for Elijah and am starting to get responses from the school district team. I'm sure that I am being seen as that "squeaky wheel". And you know what? I'm okay with that. Even my people-pleaser mentality is sitting with my new role, because I'm doing it for my son. I don't want to be the parent of that poor little boy with Down syndrome that I saw being dragged around campus (twice, by the way. And the first time was not done gently, at. all.). That boy takes the bus everyday and I'd be willing to bet his parents have no idea about what's going on.

Which is why I'll be following a certain school bus around one day soon. Looks like me and my squeaky wheel have some investigating to do...

And just so my post isn't all depressing...our most recent family photo. Stolen from a friend. Photography by Teresa Rish.

Thursday, May 2, 2013

I Think I Can, I Think I Can

He doesn't *Think* he can. Walk, that is. Elijah has been on the verge of independent walking for quite some time, and as all of his therapists and I've suspected, it's a confidence issue. Today, he stood up in the middle of the room, picked up a basket and walked....probably because it felt like he was holding onto something that was stabilizing him.  Of course, I didn't catch THAT time on video. But, I did catch this little glimpse...

Now we just need to get him to think he can do it, without holding on. He's so close!! Come on baby boy:

I think I can, I think I can...just like the Little Engine Who Could, you can too!!