Tuesday, 28 February 2012

Home Visits

Nathan started his ABA program with the county back in January of this year.  It's 5 days a week, 8:30-10:15am.  I am definitely seeing a difference in him....it's amazing.  The occupational therapist also comes to our home about twice a month  both to show me what he is doing in school and to give me tips on how to expand on these practices in the home.  Our OT's name is Christie, and I love her, I suspect that Natey does too even though he is always telling her to "go".  I don't know how many of you have seen a 2 year old sitting at a desk and doing "drills", but it is kinda nutty.  Not in a bad way, but in a, wait a minute, wasn't this kid just trying to lick the floor 5 minutes ago kind of way.  Now here he sits in his little chair, after being told to "come here" (and going!) doing puzzles, matching, sorting.....pretty cool.  The routine is for him to do 2 "tasks", if he does well he gets a fun toy (say a spinner) to play with for about a minute....if he doesn't he gets something a little less thrilling to play with, like a....spoon.  After the play, it's back to 2 more tasks, and then he can get out of his chair, give mommy a hug and play for about 3 minutes.  Then, back to the table (lather, rinse, repeat, you get it)....

I have seen him progress from matching one item to a like item to handling 2 choices with distraction.  He is working the shape puzzle completely independently, including when turned backwards.  He is learning to follow direction, he is responding to his name and "come here".  To give you some idea of how much progress this is, I once called Nathan's name over and over again just to see if he would ever turn.  30 times......nothing.  There are still times when he is "gone" and will not respond even if you are standing on your head holding the most gluteny snack available and dangling it in front of his face.  But those times are definitely fewer and farther between.  Most of the time he responds.  So gratifying to have your child look at you....

And language!  In December Nathan was not really using words in a constructive manner except occasionally go.  Here is what we have now:
"go", "more", "more book", "I don't want", "I good boy", the ever popular "no", "I did it" and many more words and phrases that are what I would call "emerging", ie, not consistent and not always intelligible, but coming along! 

This is good stuff

Thursday, 23 February 2012

Intensely Exhausting Paperwork

This is what IEP should stand for!!!!  I am a nurse....I am not afraid of paperwork, bring it!  I am used to double, triple and quadruple documenting, then placing data onto 30 spreadsheets and distributing these spreadsheets to everyone and their brother so that everyone is "in the loop".  Lemmee tell ya....the IEP is the school system's equivalent of this documentation and I have one word for it-  headache!!!!

Today was our first "big kid" IEP meeting for Jack.  Last year the meeting took place in Jack's preschool and was decidedly less intimidating.....I mean how scary can it be when you are sitting in mini-chairs that are 6 inches off the ground?  But this year was big...Jack has been at the public pre-K program and the biggest concern was what the plan for next year would be.  Long story short.....mainstream Kindergarten!!  This is good, I know it's good.  Mommy is extremely nervous about it, what else is new?  Jack will continue to receive special education services both in and out of the classroom, as well as OT.  It was agreed that he has a fabulous vocabulary and intense amounts of knowledge regarding his "areas of interest" (enter the aforementioned robots, whales, airplanes, crabs)  Yeah, his teacher loves his "robot alarm" as much as mom and dad do.  His fine and gross motor skills, and ability to focus on tasks remain his biggest challenges.  His teachers and therapists all agreed that he is an extremely likable little boy and is well-accepted among his peers.  Phew, wipe brow.  Granted, it will not always be socially acceptable for him to walk up to a classmate and initiate a conversation with "beep, beep, beep", but right now....hey he's 4! 

I was able to address several concerns that I have been having about kindergarten with the "panel".  I am extremely nervous about the bus.  Jack has a really difficult time with transitions, and we all know how "supervised" the kids are in the bus lines.  I can easily see him getting lost in the shuffle.  While everyone agreed with this assessment, they still want me to try it.....I think mommy will be following that bus for awhile.  I have also been worried about Jack's ability to help himself during lunch- baggies, juice boxes, etc are very challenging for him b/c of his fine motor delays.  So now it appears he will be assigned a "lunch buddy" to assist with this.  He will have music class next year....this is worrisome since the radio has been our enemy for the past few years.  They specified that he should be allowed to go to another area of the room if needed but that he should not be taken out of the classroom unless absolutely necessary.  They agreed that routine will be Jack's friend and they will try to honor that as much as possible.  They also encouraged me to go ahead and put him in some extracurricular activities, something that I have been terrified to do.  At least at school I know that people are educated about Jack's special needs...I have been afraid that swimming, soccer, etc teachers would be too overwhelmed by Jack.  So maybe we'll try it again...

All in all, I would say the meeting was a positive experience.  The teachers and therapists listened, and were receptive to my concerns.  I have heard so many horror stories about IEP meetings....people have encouraged me to hire an "advocate" to speak for my child's needs.  Wait, isn't that ME?????

Saturday, 18 February 2012

Well here we are....

I swore I would never do this....I am not a writer by nature, I usually leave that to my mom and sister.  But this year has been so overwhelming, and much of it has been impossible for me to share.  When things do not turn out how you expected it's difficult to explain over and over again, and no matter how supportive those around you try to be, there are just no adequate words.  A dear friend of mine opened my eyes to the fact that I have been closing myself off from former friends and social circles since my boys have been diagnosed with ASD.  I guess this is my new attempt at keeping people updated while only having to say it once.....Please be kind, I am new at this :)

Last February, my older son Jack was diagnosed with Aspergers syndrome.  While this was a huge blow to our family, Jack is a brilliant, funny and talented little boy, and we knew that he would likely function well in life with a little extra help.  He has been getting this help in the form of occupational therapy, special education, dietary changes and supplements.  We have had the new experience of visiting developmental pediatricians, and attending IEP meetings.  But for me, this diagnosis was no shock and was something I suspected almost from the time Jack was an infant.  He has always been obsessive, and I am not talking "my kid is obsessed with airplanes", I am talking my kid is OBSESSED with airplanes.  One in each hand at ALL times, never deviating and never hesitating to lose his shit the minute one of these said airplanes hits the ground.  Well, actually first it was stars, then it was grass (yes grass), and then it was airplanes.  Other signs:  the boy NEVER slept, his gross and fine motor development were slow and he could talk a blue streak from the age of 16 mos on. He could identify trapezoids, ovals, octagons at age 18 mos and pronounce them.  The first thing that really troubled me occurred right after my second son Nathan was born.  We were driving in the car, and as I pulled up to an intersection and turned on my turn signal, Jack began to scream hysterically, begging me to turn it off.  This continued for months, every time I needed to make a turn.  It progressed to other noises as well, such as the radio in the house, which we still cannot turn on unless we start it at a volume level of one and slowly increase over a period of about 15 minutes to an audible level.  That is how we were able to listen to Christmas carols this year. :)  The area of focus has progressed to robots, killer whales, hermit crabs, blue crabs.....but it is always there.  I am awakened each morning with "mommy have you ever seen a killer whale" (seriously, every day) or "beep, beep beep" at an insane volume, which is his robot alarm.  These things aside, this little boy is charming and hilarious. He is all of his therapists' favorite and with one squint of his eyes he can melt my heart.  Even if in the next breath he tells the family dog that he is going to die.....this is Jack's world and day by day we are learning to live in it while gently attempting to pull him further into ours. 

Enter Nathan.....
Nathan is our two year old.  Last week he was diagnosed with autism.  Rewind to last February when Jack was under evaluation.  I was asked repeatedly if I had any concerns about Nathan. My answer was always the same....no, no, no!  He had great eye contact, was always content, was babbling all the time and attempting new words like dog, Jack, etc on a daily basis.  I was relieved to report that Natey seemed to be developing normally.  He slept well, he was the easy-going baby.  Then it all started to change.  This past summer is when the changes seemed radical.  First were some sensory signs, he started stiffening his whole body in a way that we only recognized because Jack had done it too, he started making more monotonous sounds and (as I now know it is called), jargoning.  His physical development remained right on track, he climbed in a way that Jack never did, he was great with his spoon, which was an area where Jack always did and continues to struggle.  His speech slowed, then essentially stopped.  Long story short, because of Jack's history, mommy panicked!  And thank God that I did.  I had Natey in to Infants and Toddlers by September, and he showed severe deficits in all areas except motor development.  If you don't have a child with autism, it never occurs to you that if your child wants his cup, he might not tell you.  I will never forget the assessment that we initially went through.  The evaluator asked me to put Natey's cup out of his reach, tuck it into the diaper bag.  I did this, and watched as he walked over, tried to pull it out for a few minutes, then just walked away.  He didn't cry, didn't grab my arm and pull me toward it, he just gave up and went along his way.  My child was not content, he just didn't know how to ask me for what he needed!  This revelation still gives me nightmares. 

So Natey started getting services in the home once a week, I started him at Jack's occupational therapist, changed his diet, added some supplements, and hoped we were on our way.......nope.  I did not see much improvement in Natey with these changes.  More panic....Infants and Toddlers brought the head of their program to our home for further assessment and Natey qualified for 5d/week services in their autism program.  We are truly blessed that our county has an ABA program, and doubly blessed that the developmental specialist who had been working with him was astute enough to realize the home visits just weren't cutting it.  Natey has been in the program since the beginning of January, and now asks for more (guess what, no really, we have no idea until we try everything we own) and asks to go (where?  we have no idea, and sometimes he is actually telling you to go).  He told my mom to go when she arrived for a visit one day.  I said, sorry mom, but I've gotta be honest with you, I am THRILLED!  I have Natey on an even more restrictive diet than Jack's, he gets essentially 7-8 foods, and I spend approximately 10 hours a week cooking these foods to the diet's specifications.  I am giving him methyl-B12 injections three days a week.  We need to add a private speech therapist.  We need to go to a DAN (defeat autism now) doctor.  We need.....to do a lot more.  But we are at least on the right path, and sometimes that has to be enough.

Now to me.....maybe I have retreated a bit....ok, alot.  In my defense, it is very very difficult to go anywhere with the boys right now.  I pray that this will change.  Natey cries the minute I cross the threshhold into a store (Jack used to do this too, but is better about it now).  The assault of lights and sounds and other sensory input is just too much for him.  He bangs his head, he collapses onto me, he shuts down.  It's too much for Jack too sometimes.  Unfortunately, he has a tendency to curse which is just fantastic when you're out in public with your preschooler, let me tell you.   But this is just one reason.  It also has alot to do with MY issues, my fear that my children will not be accepted by their peers, or my peers.  And it has to do with sadness....it hurts me to see my children among more neurotypical kids who are doing all of the age appropriate stuff.  I am thrilled for the parents of these children, and love to see them.  My boys' diagnoses are very raw right now, I am still trying to process how unrecognizable my life has become.  I am not asking for pity, just a degree of understanding.  I am blessed with a fabulous group of mommy friends who we met when Jack was just a newborn.  I miss them greatly.  And I will be back!  We are doing a little better everyday and I am determined to do everything I can to help my boys.