What a great weekend!!!!!!

We had such an amazing weekend this weekend!! We spent time at the park where the one who ended up being limited in being able to run freely was Gabby not Michael. He stuck around and other than one little wandering incident a little too close to the swings for myself and the parents pushing their kids he did amazing! 

This was followed the next day by some time at JumpZone where Michael is absolutely in heaven. Actually, both him and Gabby did very well until the last 15 minutes or so where exhaustion set in.

Then finally on Sunday we worked with some of Michael’s favorite iPad apps for his vocabulary work!! He did absolutely amazing! He said words I have never heard him say before. Like bicycle, police car, ambulance…of course not as clear as you and I but, they were distinct new words. This combined with the other progress of words returning is such a reason to continue to hope that with the right level of intervention we will be able to successfully pull him out of his “fog” more often than I feel we are able to do right now. 

We are counting…again!!

One of Michael’s early skills which we lost was his ability to count to 10.  We haven’t made it all the way back to 10 but, he is back counting after brushing his teeth before he jumps down from the counter (of course with me holding his hands.) I always say, “1, 2, 3 JUUUUMP!” lately he has taken over the “1, 2, 3 again.” Then he counted letters on Pete’s shirt early in the week up to 4 and today as we were adding balls into a toy we were counting and he made it up to 6.  I was more impressed with the counting up to 6 especially since I was only counting up to 4!! Just more proof that all the words he has used in the past are in there somewhere it is just a matter of helping to pull them all back out!!

Michael’s Plan

We met with Michael’s coordinator to create his therapy plan. After setting his goals, and reviewing his assessment --we created his plan.  We are starting with three to four days a week of various therapies (Speech, OT, Behavioral,) with the ability to add or take away depending on how receptive he is and how much progress he makes. With all the reading out there at least I feel like this is getting us starting from here on it is going to be trial and error to figure out what works.

Our coordinator didn’t take but, two steps outside before I thought, “How am I going to do this with work?” Second thought; “What a crappy thought that is to have,” third; “god what a horrible parent I am for thinking about work and not Michael.” Luckly, I am past it now and realize all these thoughts must are normal and typical (not an impression of how good or bad I am as a parent).

I am excited to get started. At least I will feel like we will be moving forward, so far it has felt like we have been stalled. We start this month and have 6 people on “Our Team” which will be working closely with Michael.  Stay tuned on what we hope to be progress or at least help slow down the regression we are seeing.

Overtired

Most days I am lucky to get 5 – 6 hours of sleep. Which in all honesty for me is plenty but, lately I am lucky if I am catching 2—3 hours of sleep. As a result my patience is thin and I have had this sense of feeling sorry for myself.  Gabby is teething badly and as a result she is up at night usually around 12 and 2, 4. Michael has learned to climb out of his crib (which physically he has been able to do for a while but, I think the thought just never occurred to him). As a result it is nearly impossible to get him down and it results in him cuddling in my bed with me to go to sleep (around 10).   He would sleep soundly but, since Gabby gets up he ultimately ends up wide-awake at 2:00 ready to jump, run and play.

I attempted to put it in the right context lately that we are fortunate to have two children that love to snuggle and sleep with us. Some day these days will seem like a distant memory and we will be wishing for them back.  For now I will try to keep that concept in the forefront of my mind but, it would be amazing to at least get one night of sleep weekly to make up for all the nights we spend cuddling in a bed that is too small for four.

Tough Realization

Today we went for a visit to a school specifically for children with autism.  It took everything in me to not break down in tears several times.  I fortunately held it together for the tour.  Today was another tough realization that ‘autism’ is something that is not within my control. It is also not something (although I wish it was) that I can fix.  Although, I know there are millions of parents out there that are faced with greater adversity adjusting to the fact that my child has challenges in front of him that I can’t just solve for him is a difficult realization and something I am still struggling with accepting. 

He is such a happy, fun loving child it was tough to look at the children today and realize that he won’t keep pace with his peers -- and that, that gap will only continue to grow as he gets older.  It is double upsetting that he won’t have 100% control over what he achieves or accomplishes in his life.  That he will be there with his diagnosis dealing with it every day for the rest of his life.  There is part of me that still hopes when we go back to test his ears in a couple months we will learn that this is all just a big mistake (sadly my brain knows that this won’t be the case). 

It is tough as a parent to know that there is a barrier (hill to climb, challenge, etc.) that I cannot just move out of his way.

Ok – that is enough of the pity party for today. Some days are good and others are harder. Chalk today up to a hard day.

Amazing multi-taskers?!?

Women, moms in general are amazing multi-taskers or are we?

Lately, at work I feel like the little engine that could – but, instead of going up the hill I am slowly rolling backwards down.  Now don’t get me wrong I enjoy my job and am challenging more developmentally and just plain old mentally then I have in a long-time. That being said I feel like I am running at mach 10 but, oddly enough not moving anywhere.

There isn’t a meeting I am in that I am preparing for the next meeting or wrapping up from a previous meeting.  I am not alone all of us in these “meetings” take them the same way. I am making a resolution for next week to see how long I can last without multi-tasking. I think this will force me to do two things:

1.       Really evaluate my meeting schedule. If I think I can multi-task an entire meeting, do I really need to be in the meeting?

2.       Focus! Although I think we are all probably decent at multi-tasking I am truly beginning to believe that none of us are as good as we think. A whole bunch of people in a meeting not focused on the meeting itself results in what??!?! Normally a lot of follow-up meetings to actually resolve this issue.

Wish, me luck because as I glance at my schedule for next week I have nearly 6 hours of meetings daily. So I will either, break my resolution by the end of the day Monday or not get any work done.

Magical Moments!!

Amidst everything that is going on there are still moments that are amazingly magical. Today, we had two of those moments with Michael.

Pete arrived home about 5 minutes before I did (today was our meeting to create our therapy plan).  When he came home Michael said "Daddy" not once but, three times. Part of me is sad to have missed it but, another part of me knows I probably would have been a teary mess if I was. Other than when Michael was just over a year he has not even uttered the words "Mama" or "Dada" when referring to either one of us.  Then about 30 minutes into our planning meeting Michael climbed on my lap and nestled in as is typical when he is tired (we are fortunate that he is an amazing cuddler and LOVES it!) and looked at me and gave me a kiss. My second this week!!! Earlier this week it was at about 3 AM when I couldn't get him to go back to sleep.   It is amazing that admist all that is going on it is almost as if he sense our stress and is reaching out to us to let us know things will be ok.  I know that probably isn't possible but, I am in love with the idea of it!  I am thankful for the amazing magical moments we get to enjoy with him and am looking forward to all the ones yet to come.

Up on my Pedestal

So although I don’t plan on using this as a forum to talk about political items or government policies or those sorts of things……. I am going to use this as a moment to talk about our recent experience with Insurance.  Until this year other than myself we have been under Pete’s insurance the coverage is comparable to mine but, the cost is about 75% cut from mine.  We are also fortunate enough to be working for two companies that provide good insurance -- even at a cost.

During Michael’s assessment our coordinators encouraged us to call our Insurance carriers to figure out the type of insurance plan we had and if it was self-funded.  In our dazed look that we must have been projecting they continued to go on to explain to us why this was important.  They explained, that to-date most states have mandated coverage of therapy for autistic children.  Although this is mandated coverage in CT, if the plan is self-funded the company has discretion on what they cover. One of these “optional” items includes therapy for autistic children.  Lucky for us we are in the middle of open enrollment so Pete started by making his calls. We learned his plan was self-funded. Upon further research we were able to find out that it is exactly the services we need, that they need that they consider “optional” and not covered.  Although my plan is self-funded, lucky for us they do cover services for autistic children including therapy with OT, PT, BT, etc.  Just at a much larger expense (about 200% higher than we were paying).

So circling back to my first line. In a country that is prosperous, named  “the land of opportunity” it is absolutely atrocious that proven medical conditions and medical science is not evenly available – especially when children are involved. As I think of people in our lives that faced with the denial of coverage or inability to absorb the extra expense that they would not have the same level of intense care that we are obtaining. I also feel fortunate that we are lucky enough that one of us has insurance to cover what we need, and double lucky that we have the financial ability to absorb our increase in costs to get Michael what he needs – but, it should never come to that.

Today I exercised my vote…

Whoops!! That isn’t what I meant

So I read an article recently that made me realize I have been saying it all wrong.  Michael isn’t autistic he has autism.  The changing of how I am communicating this may just be a switch of words but, the impact to that message is important. 

It also helps me put this into perspective that we have a great opportunity to leverage all the strengths that autism will provide him with that he may not otherwise have had, and we will be his strength in helping him overcome the challenges ahead.

Austin’s budding baseball career!

This week we had Austin’s first parent meeting with what will be his new baseball team.  During the meeting we learned about all the training that will take place and the overall level of commitment required. It definitely has me feeling a little overwhelmed so we have been talking it through to make sure it is something Austin definitely wants to do.

It is amazing how far sports have come from the days of just playing in your town, then for your school. Now to stay competitive to even play at the High School level so much more is needed from kids from both a mental and physical commitment.  We are definitely not in the business of creating a professional athlete – that is 100% up to Austin to decide if he wants it bad enough to give it that level of commitment. Hopefully, athletics will continue to teach him the values of teamwork, hard work and commitment.  In today’s world when everyone is so quick to say how we are hurting the younger generation by always giving trophies – Austin knows too well what it feels like to get benched, lose or not make the cut.  Hopefully, it will continue to build his character and create a well-rounded adult on the other side.

A Sheep says ..WHAT?!?!!?

One of the most enjoyable moments of being a parent of a one-year old is teaching first words. I tend start with animal noises because it seems to take part of their natural mumbling and transfer them easily into something more meaningful. Right now one of the most enjoyable things we do with Gabby is get her to say “What does a Sheep /Cow/Lion say?”  In addition, we of course are teaching other words like “Bye.” Just past week “Bye” went from “Baa” to “Bye.” Of course though that also means that the sheep went from “Baa” to “Bye” when he talks!!! We will get her to straighten it out but, it is so fun to watch how much children change in such a short time. Just 14 months ago she was born – now we are walking, playing with Michael and learning words!! Although she is our third the miracle of children and their development still amazes me!