Challenges Part III

For the last 2 years I have had this verse on my refrigerator. 

Philippians 4:6-7

New International Version (NIV)

⁶ Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. ⁷ And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. 

 

This last week I really need to remember this.  We had 2 separate meetings this week with Austin's school, the first one on Thursday was with his principal and the district's special services coordinator.  The main objective of this meeting was to address the incident of Austin leaving school campus a couple of weeks ago as well as letting them both know that we are willing to go to due process if necessary, because what Austin needs from school they do not have.  We let them know that under no circumstances were they to let him leave and walk home again.  It is not safe.  The principal mentioned wondering if part of Austin's issues were separation anxiety related with me, because he always asks for his Mommy when he is upset.  He has never had any other 13 year old ask for their Mommy.  I agreed that it is unusual but his therapists didn't think that it is anything other than the fact that I get it when no one else does... I know he needs deep pressure to shut the lights off and to give him a few minutes of silence.  Inside I was thinking to myself that I thank God that Austin does call me Mommy sometimes and that he does need big hugs from me that these are the gifts that his special needs give me.  It makes the difficult moments a little easier to get through.  And we ending the meeting with them agreeing to send a district rep to our meeting on Friday with Austin's IEP team.  

Friday's meeting started with a review of Austin's re-evaluation and which held no real surprises.  He has Asperger's, Anxiety Disorder, ADHD and learning difficulties.  Our advocate says basically Austin is a perfect storm because he has so much going on and that you can not address his needs with amateur hour fixes.  Finally I decided it was time for me to speak.  This is what I said to the team.  At some point as a team you need to decide that you have tried your hardest, given your best and yet Austin needs more.  If you think that for us as parents having Austin placed in another school is an easy decision please know that it is not.  In order for us to come to this point we as parents had to let go of many of the dreams we had for our son.  We had to realize that as much as we want him here, it is not what is best for him and that it isn't okay to have a child telling you he is useless or that he doesn't deserve to be here on earth.  We need to put his needs first and move on. They asked what he needed that they didn't have there... He needs a therapeutic setting in a school that offers smaller classes, OT sensory input, and much more.  He needs somewhere to go when he has a meltdown that is soothing and safe, not an office with desks, chairs, bikes and more in it.  He needs all of the staff that he is around to be trained extensively with kids like him, not just a four hour workshop.  I think we finally got through to them, it was a long 2 hours.  We have to meet again within 30 days and before then they are to have investigated other placement options.  For the first time I feel optimistic about the outcome of an IEP meeting.  We are hoping that this is a first step to getting Austin healthier and happier.

I am always drained emotionally and physically after these meetings but we had a great weekend which included going to church this morning where our message given by our Pastor was on the verse that I shared in the beginning of this post.  I don't think that is a coincidence.  God works in mysterious ways.

We are closer to having our Raffle Fundraiser ready to go so our next post will be all about that I am sure.  Thank you so much for all of your positive thoughts and prayers...they are appreciated!

Challenges Part II

Well, I thought I was going to be able to post this last week but Mother Nature interrupted our scheduled meeting so now you will have to wait until this weekend for an update on the school situation as we have not one but two meetings with the school this week.  Fun Stuff.

But this is a good time to let you know how Austin handled the power outages we here in the beautiful NW got to enjoy last week, although he enjoyed the snow and no school the power being gone was not so nice for any of us.  When it got to be 48 degrees in the house we chose to pack it up and head to Grandma and Grandpa's thank goodness for them and their warm house and electricity!  Austin missed all of his gadgets, DS, computer etc.  He actually played a game or two with the family. ;o)  He had one or two meltdowns and just when I thought he was going to explode we called home and found out our power was back.  Never been so happy to climb into bed that night.


Sunday we were getting ready for church and I was so pleasantly surprised when Austin asked if our new minister, Pastor Doug, would be there?   He did the Christmas Eve service and Austin really enjoyed his message and even turned off his DS to listen and pay attention, this is HUGE!  He does always have his noise reducing headphones on so that he can endure the choir and singing.  When I told yes he willingly came to service and enjoyed himself.  My faith is so important to me, God holds me up at times like this when I am feeling overwhelmed and at a loss I have to remind myself to let go and let God.  Easier said then done.  This morning I was heading into a dentist appointment listening to my Christian radio station when this song came on and I started to cry, I hope you will take a few minutes to listen to the words and know this exactly how I feel.  I would do anything for my children for their health and happiness.  http://www.godtube.com/watch/?v=00CFCNNU

This afternoon we had another appointment with Austin's Dr. and we did have to put him on the Metformin to help with his weight gain and sugar levels.  He had gained another 6 lbs since November 18th.  Please pray with us that this gets under control and that his workouts with his Dad helps.  Also after much inquiring in tears he was able to convey to Dr. Kwon that he feels useless at school because of everything that is going on with his issues.  Admitted to him that he is depressed about the fact he can't do better.  So sad.

We are planning raffle to raise the money for his service dog.  So if you or your business has anything that you would like to donate to be raffles off please let us know.  It is a tax write off and we do have the tax ID number for ASDA also.

Thank You all So Much.  Holly

Challenges Part 1

Well this is going to have to be a two part posting because I don't want to overwhelm you all with a novel. ;o)  It has been a very difficult couple of days.  Yesterday Austin did leave school campus and walked home at about 9:50am.  Thankfully we were home and were able to evaluate the situation.  We will give more details on this later but as of now we don't have the full story.  We sooo appreciate everyone's thoughts and prayers that they have been sending.  He is doing somewhat better and did go to school today.

What I really wanted to touch on was more of the challenges on us the parents.  It is so hard knowing what is the right direction to go and what is best for Austin.  Then even harder figuring out what would be best and not being able to provide that because of finances.  We are his Mom and Dad and it's our responsibility to provide for his needs.  When you can't do that you go through the emotions of feeling like a failure.  Intellectually I know that I am giving Austin all of the love and support I can, but my heart hurts knowing that there are things out there that would help him so much more that I can not afford.  Not just the Service Dog, but different therapies, camps, sensory tools etc.  Insurance doesn't cover most of the therapies and recently ours changed so none are covered.  Then of course I go to what should I be doing for Grace?  How is all of this affecting her, is she okay?

My husband said something funny to me last night when I was crying and upset about all of this, he was giving me a hug and said don't you wish you could just flip the switch on your emotions to off for a little while so you could relax?  Yes!!  Yes I do.  TV shows sometimes do that for me but mostly it's a good book.  Thank you Janet Evanovich, Lisa Jackson, Heather Graham, Karen Rose, Gena Showalter, JR Ward, Tess Gerriston without your great books to read the last few years would have been miserable.  So find yourself a good book and drown yourself in it for awhile, it works wonders.

School Blues

Well the school week for Austin continued to go downhill, culminating in a seriously difficult day at school on Friday.  When I went to pick Austin that afternoon my cell phone rang and it was Austin's para letting me know that he was in the office and that they needed me to come in.  When I got into the office his para let me know that he had spent the day in the office and that they had to restrain him at one point for everyone's safety.  He also tried to leave.  According to her this all began in 2nd period which of course was the continuation of the packet work from earlier and it escalated from there.  She told me that he knocked over the chairs in the room where he was and made a mess of some t-shirts and empty school water bottles.  The other para commented that she should have me look through the window at what he had done, his new para said no she will see that when she goes in. 

When I entered the room they let me know that before Austin left they wanted him to clean up the mess he had made.  He was clearly still upset, tears and wanting to leave.  I looked around the small room (the size of a small office)...this is where he is supposed to decompress and calm down.  Inside there was a small desk, 2 bikes and their gear, 2 chairs, an empty box that had t-shirts and water bottles in it.  The shirts and bottles were scattered about and in the corner was the weighted blanket to give him deep pressure.  Nothing about this space was soothing whatsoever at all.  If I were told I had to stay in this room I wouldn't have been happy either.  It made me cry to think that is where he spent his day.  Don't get me wrong I don't condone the destruction or the fact that he was throwing things but how can they expect him to calm down in this environment and to succeed?  He needs sensory input and output at these times and they don't have the facilities there.  I tried to hold back my tears as I explained to Austin that we needed to clean up the room before we could leave.  I guided him step by step on how to clean the room so he wouldn't become overwhelmed again and of course by doing it this way instead of just saying clean up the room he was able to successfully do it.  So frustrating, I just wanted to get out of there.

It scares me when he tries to leave the campus, that and I hate that they have to restrain him.  Even though I know it is for everyone's safety.  I am not sure how much the dog will change all of this I just know it will keep him safe and will give him confidence, as well as peace of mind for me.  I had to wait a few days to write about this one because I just was tired of it all.  Sometimes I get that way, but as a great friend reminded me God had plans for us all and Jesus is always by my side.

The rest of the weekend went well, we celebrated my Dad's birthday and Austin actually played a game with his cousin's!  Today we played the Wii and started posting comic books on eBay for Austin's fundraising.  The store on eBay is called Comics for a Cause.  We also are getting the ball rolling on the raffle.  Wish us luck and send up some prayers.

Whose homework is it anyway?

Any parent can tell you that homework is challenging with their kids, never did I think I would be working on it so hard with my son.  So this week started off with Austin having a great day at school which is rare and exciting.  His para walked him out at the end of the day gave me his homework and said that he needed some help with it (Math) and that she couldn't figure it out.  Excuse me?  So let's get this straight...he was assigned something that even they couldn't teach to him.  He is not in a main math classroom.  So Jimmy looks at this math and then takes 30 minutes online searching on how to do this math puzzle.  This is what they consider modified assignments?

Then today he is walking out to the car and I could tell it hadn't been a good day, his head was down and he was grunting and somewhat defiant with me and his para as she was explaining his homework for the night.  He had 3 math problems, not a big deal and then a packet of language arts.  I can not tell you how many times we have explained that packets are not a good idea for Austin, you are much better off handing him one page at a time so he doesn't get overwhelmed and especially with language arts.  So needless to say I sit down with him and get him started on it.  I told him I understand his frustration with it being too much and that we will focus on one page at a time.  Then God Bless Grace she comes and sits down with him and helps him with ideas for his sentences.  (She is getting a Garfield book for that one.)  Love that girl she is so awesome with him. 

So we are keeping track of all of these things that they are already supposed to be doing for him according to his IEP and how they are not being done so at the next meeting we can show them how this is not working. 

An update as far as the new routine with dinner and such they are going really well.  It has been great for the whole family, it also helps him with socializing.  He is interacting with us and conversing a little more about our interests.  That is huge.  Small steps.

New Year, New Routines

Had a pretty good New Year's Day.  Family day spent Bowling, Book Shopping and Dinner together at the dining room table.  We all agreed that eating dinner together without the TV on and the candles lit was fun.  So from now on that is how we will dine.  We also talked as a family about needing to eat healthier this year and making sure we are all moving throughout the day.  Austin's weight has been continuing to creep up with this new medication and we are concerned about his blood sugar levels, normally with his anxiety we don't fill him in on everything but this time we had to because he is so picky about the foods he will eat that we are going to have to limit his carbs, sugars and encourage more healthy grains and veggies.  He didn't take the news very well (pretty full on meltdown)* but after we agreed to do this together he was actually somewhat excited.  He and Jimmy now have joined a gym together and we are using the Wii fit and Kinect to get all of us up and moving.  Let me just say that it is a good thing no one can see me doing Just Dance 3. LOL.  We had fun cleaning out the freezer and pantry of all the holiday goody leftovers and making out our 2 week menu. 

So to recap we danced, bowled, shopped... hey that burns calories too and it was for books so educational, and ate dinner together as a family.  We had a lot to choose to write about in our grateful journals we just started.  I think this was a good start to our 2012.  Out with the old and in with the new.
Happy New Year Everyone!

* I thought I should give you a description of what a meltdown of Austin's usually looks like.  Generally it starts off with grunting and groaning, then he will start yelling and sometimes thrashing about.  If we are at home I request he goes to his room, sometimes he needs assistance getting there.  Once there he continues on for a few minutes and when I notice that he is quieting down (just a few minutes later) I go into his room shut off the light and use his special cube hugging chair to give him deep pressure.  At this point he usually is crying and then he quiets. 
If you could imagine how much help a Autism Service Dog could help avoid these situations and calm him quickly as well as provide the pressure he needs when he needs it.  After all I am not always with him and the dog would be.