Tuesday, 26 January 2016

Nate- development can lead to new challenges

I haven't talked about Nate in awhile.  He has been doing very well.  He has been in ABA consistently for about 10 months and in complete contrast to our experience with Jack, he has had the same tech the entire time, who is amazing.

And good things are happening- he can repeat an approximation of any word you request.  He can repeat actions, he can do many things with verbal prompts.  There is so much progress that it's hard to get into- which is an amazing thing.  

His level of awareness is much higher than it was- this brings some new challenges for our family- for the first time, we are seeing sensory sensitivities in our usually "seeking" child- he covers his ears now with loud noises, he doesn't like the snow any more.  His tech and I have committed the cardinal sin of cheering too lousy when he does something well!! This is something he never used to notice- it's a positive- but I imagine it makes his life harder.  He also wants MORE input in other ways- especially visually- he will try to grab his iPad and his brothers and put on two movies simultaneously.  Or (and this one in my opinion just shows he is a genius) he will stand on a chair and watch his iPad in the mirror.  Not even a little kidding.  

His verbal communication and note I say communication and not speech, because they are very different entities, has been the slowest to develop.  And unfortunately that lag along with increased awareness is causing him more frustration than he has expressed in the past.  He is not content to accept the status quo, i.e. the same food he has always liked- he wants to keep trying until we get it right-but often loses it before we get there.  But he is trying to do it verbally, and it's just so difficult for him- he can ask for something to eat, and then when I say what do you want? He says "iPad".  And he may even be holding it.  It's just his "default" response.    It's so frustrating for both of us.  And yet it's encouraging at the same time, if that makes sense 

I am finding myself speaking to him on a different level- I often wonder if he thinks I am talking down to him.  I can tell by his actions and reactions that he has so much to say.  And yes, we have tried a device in the past, but it was clear he was not ready.  And he has always been in that gray area of having some speech and really TRYING to speak.  Of course we don't want to discourage that!  But at the same time I want him to be able to get out what he needs.  He is doing amazing with his adapted spelling in school, has mastered matching most of his letters both lower and upper case in ABA.  When I read to him I point to the words, I have the closed captioning on when he watches a show because I have the sense that letters make sense to him- I could see him learning to read just by exposure.  And I am open to a device for him- because of his continued speech efforts, I am not willing to call him nonverbal, and I will never give up on verbal communication- but I want him to be able to express himself- and if a device is the bridge that he needs, so be it.  

His building frustration reminds me that we are dealing with a very whole, very intelligent little boy who probably wants to throw his hands up and tell us all where to go many times each day.  I can't even begin to imagine how annoying we must be when we just don't get it.  

We are getting there- man is this a curvy, bumpy ride but this child teaches me something new every single day.  And my critical thinking skills and nonverbal communication?  Through the roof!

Friday, 15 January 2016

A Difficult Update

This is a very hard update to write.  And it’s written by a mama at her wits end.

I knew when Jack had to change schools that it was going to cause enormous stress for him-  that he would have difficulty coping, that he would have a burst of behavioral issues similar to what we saw at home over the summer and this fall.  I guess I didn’t realize how bad it would get.  It does not help that one of his ABA practitioners left literally 3 days before we had to tell him that he was changing schools, that the replacement person fell through and he has been without anyone 3 out of 5 days for almost a month.  That doesn’t help at all.


It doesn’t help that the people surrounding Jack in all areas of his day are strangers, people that don’t know his anxiety, people who don’t understand him or know his history.  People who don’t know how to work with him.  I want to scream.  I want to throw something and have a behavioral outburst.  I want a turn. 

I don’t get one.  Instead, I am expected to remain calm when I want to tell people to get their heads screwed on straight and help my son.  To smile and act normal as I explain to them that this is week TWO and by definition the period when he is going to have the hardest time, as he comes to realize that this is indeed permanent- that he will not be at school with his friends anymore, that he won’t see the aides and teacher who knew, and nurtured him for the past 4 yrs. anymore.  I am expected to deal with a bus driver who wants to sit him at the back of the bus by himself because of two verbal outbursts, when what she doesn’t realize is that this is only going to make it worse.  I am expected to be dandy with the school calling me and asking me to get him on board with doing his work this morning- to talk to him in the middle of a meltdown and “fix it”.  To deal with them telling me they are going to give him “a good month”, before we have to meet.  This in my view means, they want him out.  Already. 


I am expected to smile through him coming home from school crying many days, telling me that the principal told him to “cry all he wants”, and him sobbing that he never wants to go back to school again. 

And I can’t handle it.  I can’t.  Because this fall was already traumatic for all of us.  And the people surrounding him now don’t seem to be giving him a chance.  And I can’t make them do it. 

I wish I could put him in a private school.  I wish I could find people to work with him who love him.  I wish I could make his ABA be consistent, I wish that asking for someone to come 2 hrs. a day 5 days a week and do an effective job wasn’t asking for the moon.  But apparently it is. 

I am scared to keep him home, I am afraid to put him on the bus.  I am afraid to make a work call for fear the school will call.  I am afraid they won’t call when something really serious is going on. 

There are days lately that I just don’t feel like I can do this anymore.  I don’t know who in this universe thought I was strong enough to do this for two kids, but I feel like they were wrong.  I am tired and I am scared.  I don't know how to advocate for him at this point, and I don't know what to advocate for. 


Friday, 1 January 2016

My Weight Loss Journey

This is a mama post- very little to do with the kiddos- you've been warned!!

I posted before and after weight loss pictures the other day on Facebook and got about a bazillion "how??" Questions. So now I am sharing all that I have done.

The realistic answer is the one we all hate to hear- diet and exercise.

That being said, over the past 2 years I have tried so many diets it is ridiculous, dr oz cleanses, weight watchers, shakeology, other shake programs, the hcg diet, essential oils, voodoo (kidding). I could never sustain any of it.  I drank a cleanse shake twice a day about a year ago for 2 months that was recommended by a homeopath, it literally tasted like chalk- by the end of this I was actually gaining weight.  

I shredded, I 21 day fixed, I did insanity max- it all hurt like hell and I didn't see the results I wanted and needed.

We all need a catalyst to change- something that drives us. I will admit that for me, while I would like to say it was an internal drive to better myself, the initial trigger was caused by an external factor, which was my sisters wedding.  I had been looking forward to the day she got married basically since the day she was born (she is 12 years younger than me), but when it was finally happening I was terrified at the thought of wearing a bridesmaids dress with a bunch of women at least 10 years younger than me- and I was the heaviest I had ever been.  I didn't want to embarrass myself, or even worse, her.  Cue all the diet craziness.  The hardcore attempts started last January- and did not go very well at all. About a month after me, a neighbor started a medical weight loss program.  I watched her weight seem to literally fall off (obviously not the case but compared to me it sure seemed like it!!). About 3 months later-
A good 30-40 lbs less for her and probably 5 lbs MORE for me, I finally decided I was going to find a way to stomach the cost of the program she was using and get myself in there!  I was in a time crunch.  It took over a month to get an appt, by the time I got started it was June 23rd- two months from the wedding.  I had little hope I would see a difference by then but I was not giving up without a fight.  We went to the beach for a week during my first week on the diet- I literally sat in an ice cream shop across from my whole family eating Sundaes while I drank a lemon diet shake- one of the hardest weeks of my life- I lost 4 pounds.

Here is the website for the program, run by a local Pcp.  It is not one of the big popular diets, but the products used are prescription and available through other practices:

The program involves shakes, bars, puddings and soups.  It is very restrictive and high protein. There are weekly classes and the program is supervised by a doctor and a nutritionist, who when you get close to your goal weight help you adapt back to regular foods, which I have been doing for the past 2 months.  You continue to lose weight as you adapt, if you follow the instructions and now I am at "maintenance".

After about a week on the program I started adding in exercise- first Jillian Michaels shred- it took me 60 days instead of her prescribed 30 to get to level 3- which is killer- but I have abs and nice arms for the first time in my adult life and I highly recommend it!! About two weeks into that I started couch to 5k, which is a nice slow progression to running a 5k.  I ran the full distance the Thursday before my sisters wedding.  I will disclose that I ran cross country in high school and ran some as an adult, so it wasn't all new to me, but I promise you this-  it was "like new" with how out of shape I was when I started!!!

By the wedding I was down 20 lbs, not nearly where I had wanted to be, but a huge relief after where I had started. The dress I had tried on and cried over in June was taken in by about two sizes, so that was good

After the wedding, one of the medical technicians at the program said, "so are you finished now?"  And that's when it hit me that no, I was not, if I was going to work this hard, I may as well finish what I started!

I have lost the other 20 lbs I always wanted gone.  I ran a 10 k, then a half marathon.  I kept doing Jillian Michaels shred on my off days from running- it's 20 minutes people- we can do ANYTHING For 20 minutes!! I can plank row with the best of them these days!  And I try to log at least 20 miles running each week.  It's not easy with the kids schedules, therapies, countless IEP meetings etc, but it is WORTH IT.  And not just for me- they have a completely different, energized mama who takes them on outings after her 10 mile runs on the weekends.  Not to mention a happy mama!  Jack observes my Jillian Michaels and tries to do it with me- he stands behind me and tells me I am making a "good choice".  He has been my biggest cheerleader.  

So there is no big mystery here, lots of hard work, an investment of time and money, and a good team of professionals. But if I can do it- anyone can- full time job, two special needs kids...these things just mean time management is everything. And now I have a new sanity saver- running- it is everything to me.  And boy did I get my results!!!