Word of the day: phenomenal

I took Zane’s teachers out to lunch to see how things are going.  My goal is to help Zane, help his teachers help Zane,  and make sure his teachers feel appreciated for all their help with Zane.    I know he is going to take more effort than the neuro-typical kids, and I just want to go above and beyond to make sure they know what a difference they are making in his life and how much that means to us.

I started out by explaining that we’ve heard the worst when it comes to Zane but that he always seems to prove everyone wrong.  I suppose I was mentally preparing myself for bad news while trying to explain to her that she could give it to me straight.

What she said brought tears to my eyes. But these were not the tears I’m used to having during these kinds of give-it-to-me-straight kinds of conversations.

She said “Zane had a phenomenal day”.

Not “good”. Not “great”. “Phenomenal”.

Think about Zane’s journey. Think about where he was a couple of years ago.   Then just take that in. “Phenomenal”.

She went on to explain that Zane has made huge strides in the last few weeks.  That’s not to say he’s caught up. He’s still behind. He still has tactile defensiveness and doesn’t want help doing art projects or washing his hands (anything hand over hand), and he doesn’t always follow directions.  But, he will sit, at least for part of circle time. He likes singing and dancing. He loves playing with trucks and trains. He loves the little playhouse on the playground.  He is starting to do what the other kids do. The separation anxiety has subsided.  He’s been doing better and better each day.  Then for a second time, she said that “today was phenomenal”.

My heart is smiling!

I bet you can guess my new favorite word!

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Decisions Decisions

We’ve been grappling with decisions lately.  We decided to place Zane in the same preschool that my (neuro-typical) daughter attended.  (“Neuro-typical” is the term used to describe “normal” kids in the special needs community. I guess it sounds less offensive to those who are different).  So, even though he is delayed, has “special needs”, and is officially autistic, we put him in with the “neuro-typical” kids, and we’re hoping for the best.

Here’s our reasoning. If he were to take the M-CHAT (Modified CHecklist for Autism in Toddlers) today, I absolutely do not think he would be diagnosed. I didn’t really think he should have been diagnosed when he was though. He is behind, not necessarily autistic. But, then again, maybe I’m still in denial.  Time will tell.  With the scores he got on the test 6 months ago, he should have gotten the diagnosis, if no other factors were taken into account.  However, developmentally, he was about a year behind because of all the seizures and medications and the test was comparing him to “neuro-typical” kids the same actual age. 

From doing a lot of reading and research, I personally think he has sensory issues, but not autism.  A lot of autistic kids have sensory issues, but not all sensory kids have autism, in the same way that all squares are rectangles, but not all rectangles are squares.  There are different kinds of sensory issues, but he is without a doubt a sensory seeker. 

The point of all this is to find the best learning environment for him.  He is still on a waiting list for one on one ABA therapy for autistic kiddos. That might do wonders for him.  My concern though, is that unlike most autistic kids, he learns from other kids.  After my tour at the facility, I quickly realized that he would be one of the highest functioning kids there.  So, combine those two pieces of the puzzle and you might have a problem. He might end up learning undesirable behavior from the other kids.  Maybe. Maybe not.   If and when they finally have room for him, we’ll have to make the decision about how beneficial it will be for him.

For now, he’s made it through his first couple of weeks of preschool.  The hardest part (for me and him) is the separation. I’m basically always, ALWAYS, with him.  Besides that, he’s doing pretty well. Yes, it is harder for him than his typically developing peers. But, so far, he’s holding his own.   It has been a blessing having the same teacher that taught my oldest at his age.  We’ve known each other for 8 years now, we’re Facebook friends,  and I even did her daughter’s senior portraits. She knows his history and she’s (hopefully) able to tell me more than a stranger might.  I know that I feel so much more comfortable leaving him with her, so I’m sure he must feel that.

Even only two weeks in, his therapists have commented on all the positive changes.  He’s more attentive, he’s interacting more, and he’s going with them, without me (and for the most part, without tears).

So for now, I’m going to take that as a sign that we made the right decision. He’s still got a ways to go, but he’s making great progress!

Grief / Depression

I just read a post from a parent of a baby who is currently fighting I.S.  Her daughter is not getting better.  She mentioned praying that God could take her house, her car, ANYTHING, if He would just heal her daughter.

I think all of us have been there at some point or another, whether you have had a sick child or not.  But, I thought I would share this link to the stages of grief.  Once I saw it, it gave me a little perspective that I am not alone in feeling this way, and it let me know other stages to expect.  Sometimes, during a stage, I didn’t recognize it, but looking back, I can remember them all.
http://www.webmd.com/depression/guide/depression-grief

It took me a long time to work through all of the stages, and even still, sometimes I regress.   I’m sure it is even more difficult for those who’s child never recovers.  But, you WILL get through this.

Children’s Memorial Hermann Pediatric Epilepsy Reunion at the Houston Zoo (Fall 2013)

Here’s a little video produced at the Children’s Memorial Hermann Pediatric Epilepsy Reunion at the Houston Zoo this past fall (2013).  You can see Zane’s back at around 0:34, and his face at around 1:45.  🙂

http://fast.wistia.net/embed/iframe/ilkex8firr?canonicalUrl=http%3A%2F%2Fchildrens.memorialhermann.org%2Fservices%2Fneurological%2Fpediatric-epilepsy%2F&canonicalTitle=Pediatric+Epilepsy+Reunion+2013

 

Finding the right fit

Experience taught us to always get a second opinion. Not just for the opinion, but to find a doctor who will listen to you and work with you. But, I didn’t apply that to therapists.

For a while we received therapy from our state program, so we didn’t have a choice in therapists. Then when we recently went private, we just got the therapist assigned to us. We have now been doing speech therapy for over a year, nearly a year and a half, and have made very little progress. In fact, my little guy wouldn’t say ANYTHING during any of his 30-minute therapy sessions. But, after a quick chat with our neuro about the frustration of not having speech therapy covered by insurance, she made a call, wrote a letter and got us some coverage at the hospital’s rehabilitation center. I was appreciative, but it’s an hour drive each way, and I wasn’t sure it was going to be the best fit (being at a rehabilitation facility). But, after the initial evaluation with a pediatric speech pathologist… the same one who would actually treat my little guy, I was sold!

In one week, he has made more progress in speech than in the last year and a half… or really, since he was born. I really like that the sessions are an hour long, because he has time to warm up and work, versus just getting warmed up by the time the session is done. This therapist gets on the floor with him, she makes funny faces in the mirror with him, she crawls under the table with him, she helps him open and close doors, and she lets him run and play. He loves it. He babbles and tries to make new sounds the entire session, as well as at home! It’s AMAZING!  We have definitely found the right fit for him.

Now we’re going to get an OT and PT evaluation there.  The therapists can do a co-treat, which I’m really excited about.  We probably won’t do much PT, though.  He is taking gymnastics at a local gym, and the instructors there know his past and are doing great working with him.  He has made huge strides in his gross motor skills since starting the class.  This week, he held on to one of the parallel bars, and raised his legs to kick a stuffed monkey hanging in front of him.   He even held on to the rings, which are hard because they move independently.  These things are insignificant for most, but a big deal for him, since he really doesn’t use his hands much. It’s great therapy for a much better price tag!   😉

 

Feeling optimistic

We had several evaluations today. We saw a private company (rather than a state/federal funded one) for speech therapy and occupational therapy. Then we toured the autism facility where he will eventually get around 30 hours per week of communication / ABA therapy.

I don’t know why, after all our little guy had been through, but I was really dreading today. It sucks to meet someone and have them tell you where your child ranks developmentally. Especially considering how far behind our little man is in speech. I think his last evaluation, this last fall, he was ranked at just a 1-2 month level (at 18 months). But, he’s made slow and steady progress in speech. He’s still at least a year behind, but has made progress! So, that was good to hear! It also sucks to visit an autism facility and see the worst cases, not knowing what the future holds. But, I guess none of us know what the future holds. Plus, I actually liked the facility and the people, and it will be awesome to have one-on-one help geared specifically to Z.

We made it through the day, and now that it’s over, I actually feel relieved and a bit optimistic that we have a new plan. I think I tend to flounder a bit when we don’t have a plan. It still has a few kinks, it will take some time to implement, and it’s going to be expensive, but we have a plan. Phew!

“Might”

After 2 years, I had to contact the genetic counselor (who we consulted during our pregnancy). She is the one who, after an amniocentisis, basically told us outright that we should abort.

Because there were SOME cells (aka mosaicism) on chromosome 1 that showed an additional isochromosome for the long arm, he MIGHT be mentally retarded, he MIGHT have heart defects, he MIGHT have maldevelopment, he MIGHT have a cleft palate, he MIGHT have had small eyes, he MIGHT have seizures. That’s a lot of MIGHTS. They only had three cases that were similar, but not the same. In those three cases, all three babies died before the age of 3 months. So, I guess her thought was that we should not put ourselves through that. She had no concerns about ending a life because of the “Mights”.

We did go on to have a cordocentesis (where they draw blood from the umbilical cord, in-utero, rather than use amniotic fluid). Those results came back perfect.

Even though one test was fine, the results of the amnio lingered, and the entire rest of the pregnancy was filled with stress, fear and doubt. Looking back, we really should not have even gotten the test, as the results would not have changed our decision. We may not be extremely religious, but we have morals and strict beliefs, including the fact that life begins at conception. So, for us, aborting would be the same as murder. I don’t care about the word “viable”. My little guy had a heartbeat, he had a brain, he had arms, legs, fingers and toes. He could swallow and kick. That, my friends, is LIFE. (Please, there is no need to make any nasty comments if you don’t agree with me, as this is not the time or place, and you aren’t going to change my mind).

I still hold a bit of a grudge against the woman who told us to abort our beloved little Zane. Maybe he isn’t medically perfect, but he is absolutely PERFECT to us. I absolutely, without a doubt, can not imagine my life without him. He is an amazing little soul!

Chatting with the genetic counselor via email today brought back a lot of negative memories. I just needed the records, but she asked some questions. I wish I could tell her he went on to be completely healthy, and that she was wrong. But, alas, he does have some medical issues. Yes, he did go on to have seizures, and yes, he is developmentally behind as a result. But, I wish I could explain to her that those things do not make me wish he was not born. There has never been a moment that I wished I had made a different decision. He is a person. He is more than the list of diagnoses on a piece of paper. He is AMAZING.

She MIGHT want to eat her words.