A Day With Jack- Ups, Downs, and Tear Provoking Progress

Yesterday was action packed.  I took the day "off"(insert the usual laughter here).  I did actually have from about 9:15 to 10:30 all to myself-  took a shower, put on real clothes- good stuff.

Jack had two doctor appointments yesterday- one with his pediatrician- for preop, and one with the pediatric dentist, also for preop.  Jack has had dental issues since the day his first tooth can in- well, let me rephrase- I could see abnormalities in the enamel right away.  By age 3 he needed 6 fillings and crowns on his back teeth.  It was not a pleasant experience at all- we were asked all of those "irresponsible parent" questions such as- how often do you brush his teeth (twice a day), how much juice does he drink (not much and it's always diluted 50/50), did you give him a bottle in bed?  Well no doctor, because my son refused all bottles after the age of 6 months, he solely nursed until he was 22 months old- a former babysitter was reduced to trying to squirt water into his mouth with a bath toy while I was working. Try again.  And of course, because of the extensive nature of the work needed, and jacks oromotor guarding he had to be under general anesthesia- so about $7000 later...out of pocket...we were all set.  Except that one of his crowns fell off, and then last week one of his crowned teeth fell out??

Anyway- one of his teeth has always been malformed- they tried to reshape it (I am guessing with white filling material) when he went to the or, but it keeps decaying- it's his enamel again.  And he had swelling in his gums around one of the crowned teeth.  We took him to our dentist, who tried to extract the tooth in the swollen area (after an x-ray showed infection)- but jack almost kicked HIS teeth out in the process.  So he sent us to a new pediatric dentist- who wants to extract two teeth, put in spacers, and potentially fill two more. It sucks. But it has to be done

I was looking at the treatment plan yesterday while we were in the office and noticed one of the teeth to be filled was one of his NEW molars- ie in for about 5 months!!! What. The. Heck???? The dentist asked if I had any questions and I was like ummmmm yes.  I told her how concerned I was and she went on to explain that about 10 percent of people are born with this issue.  He has very weak enamel, the fact that any type of decay could happen that quickly just further proves that.  She recommended getting every one of his current teeth sealed, and then, as soon as a new tooth erupts, bringing him in to have that one sealed as well.  This stinks, but at least she is not blaming us and wants to be proactive.  I am thankful for that.

When both appointments, which were obviously quite stressful and stimulating for jack, were over we headed back to his school.  His end of year party was scheduled for yesterday afternoon, all the parents come, and I didn't want to miss it. (Even though if I'm being honest, I would have loved to miss it).  The kids write a book each year, and at the party they share their book with the class- it's a really big deal to them, and I knew Jack really put effort into a story he was very excited about (this year the children were sharing an experience they had had)- although the whole quietly waiting his turn and listening to others first concept is still extremely difficult for him.  Anyway, off we went  As we walked down the hall, his class was coming back from art or music from the other direction- another transition on top of like a million others yesterday.  This is one of Jack's biggest challenges btw.  Then we walk into a classroom full of parents and with lots of food that he couldn't have yet.  It was loud, it was different, and Jack was discombobulated to begin with from the appointments.  And he was really having a hard time.  Now in the hard time department we are actually pretty lucky.  No violence, no self isolation, nothing "unpleasant".  But his little arms start flapping, his whole body stiffens, he starts shouting (louder than normal) and running from person to person, asking them about planes, locusts, dragonflies, etc.  You can immediately tell which parents and children are good with this (some of the kids just LOVE him and it is very apparent) and unfortunately tell those who are not just as easily.  Someday I SWEAR I will stop caring, but yesterday wasn't that day.  When jack has a hard time, I have a hard time.  I just wanted to grab him and wisk him awake from the few disapproving looks.

Turns out, I didn't have to.  His special ed teacher happened to walk into the room, she took one look at Jack, walked over to me, and before she opened her mouth, I said "this is way to much for him.".  She agreed, and asked Jack if he would like to have a chance to read his book to just us.  At first, Jack protested, he said he would have nothing to eat (or, if you want to know his real, scripted answer, he said, "but I'll have no food, no water, no communication"), but then she asked if he would like to fly into the other classroom and he was game.  If you look below, you will see that Jack's teacher has a shelf of vehicles with propellers, all there for one very special Jack, as rewards.

She handed him a plane and we "zoomed" next door to read his book.

I have to say this.  I am so incredibly proud of my boy and his progress this year.  Looking at this book drove it all home, not just his progress with reading, but his ability to coherently tell a story, his follow through, and his willingness to do fine motor activities.  I know that they had a long period of time to work on these books, but even so, compared to last year, this was fantastic.  Not to mention that last year, getting him to go through his book was like pulling teeth (no pun intended, ha).  This year, he just, read it.

 

This is about when my waterworks started.....

But here is where I really started blubbering.  This little boy could barely write his name at the end of kindergarten.  If you asked him to draw a picture, he would likely try to run away or literally scribble a few lines and say that's it.  I know that the drawing above looks very very basic- I know that "most" first graders' pictures look very different.  Don't care.  If you look- the blue is my CRV, the little guy with the big smile is Jack, wearing his favorite color, orange.  The big person in the front is me, also with a huge smile.  This took thought and planning, and most importantly for Jack when it comes to fine motor, motivation

And look at his colossal squid (I commented to his teacher that the person who helped him with this probably had to look up how to spell humboldt, ha)!  It looks completely awesome!    

I wrote this (other than the typo that reads Max- guess he had his typed up right before Jack's, ha).  I LOVE this picture of Jack from Easter, it is so him.  

He continued to have a pretty rough time when we returned to the class for snacks- he had a hard time waiting in line, actually what he yelled was "I DO NOT want to be the line ender".  Guess what, a little girl in his class who was done with her snack came and stood behind him, not to get more food, but to be the line ender so Jack wasn't.  That is a nice kid, right??  I was still trying to keep him calm for the rest of the "party" (or trial by fire for autism families), but I was also in a bit of a bubble- no matter how hard of a time Jack was having, all I could really think about was the book, and his teachers and classmates that are always looking out for him.  Forget those few snotty looks- for the most part, he is surrounded by such positive people every day.  And look at how he is thriving.  I am one happy mama.  

A Blessing to Our Family- Cisco Center

I have mentioned Cisco Center before, both of the boys have been going there since last April, Nate more so than Jack.  I have talked about how wonderful it is to send them to a place where they are accepted and understood.  But I don’t think I have done the staff justice.  And unless you have a child with special needs, I’m not sure that at first or even second glance, you would appreciate the small things that make this center extraordinary. 

I will try to explain by telling you about the Christmas party they had for the kids today.  From the perspective of how Nathan was treated.

It was just me and Nate who went today, Jack was in school, so it was nice to have some quality time.  He was thrilled to be in the car with me, and then we pulled into the parking lot.  We have this issue every time I take him to Cisco for a gathering, he thinks I am leaving and becomes hysterical.  So we walk in the door and what does he do?  He throws himself on the floor (note that he does not do this outside, he waits until he will be more comfortable ;-).  A couple of people glance at us, but do they run over?  Nope, they say “hi Nathan!”  Because this is expected and they are good with it. 

They scheduled a “craft” for the kiddos, but kept it incredibly simple, reindeer food, which helped minimize the meltdowns.  The kids that did not have a parent there had a staff member one on one assisting them.  There was quite a bit of screaming and resistance, but not one of the staff appeared ruffled.  At all.  We then went upstairs for some carols and an eventual visit from sensory friendly Santa.  Mats were strategically placed for kids to have a place to sit comfortably (read:  sprawl out and roll around if necessary), and then here comes Carla (pure awesomeness), tossing different fidgets and objects that provide sensory input to the kids.  Nate got a yellow, plastic bean bag thingy, which really kept him occupied in a way that I have seen few things do.  The singing was mostly parents and staff, some kids had their hands over their ears, or cried, they were hugged, tickled, comforted.  One thing was very apparent all morning- this staff LOVES these kids. 

Sensory friendly Santa arrived, and as you can imagine, not everyone was happy to see him.  This Santa, first of all, looked awesome (I have seen some pretty fakey Santa’s lately), he smiled and laughed as kids writhed and ran away from him, and each child received a handmade gift.  Natey got his first airplane that was all his own.  He was captivated.  The staff took picture after picture of the kids with their parents, attempting to get a good shot, which is a challenge (to put it mildly).  We got a few amazing pictures of Nathan today; he was just so happy all morning- I still have warm fuzzies thinking about it.

We went downstairs to eat, where almost half of the food was gluten and dairy free.  Granted, Nate was dive bombing the non-gluten-free Chick Fil-A nuggets, and if I’m being honest, I let him have a little contraband today- hey it’s a party, and gluten really doesn’t have a huge effect on him; for him it’s dairy.  Each child was given a gift by the staff.  Something amazing happened when Nate opened his gift- first of all, he actually made a half-hearted effort to rip the paper, although I had to take each piece he ripped away so that he wouldn’t start with his origami paper shredding.  That in and of itself was huge for him.  But when the paper was off (it was a train set), I pointed to the box and said “look, Natey, a train, a choo choo”.  He looked up at me and said “choo choo!”  And he was EXCITED about it!!!!!  OK, I’m tearing up writing this.  The best part is that the staff was right there celebrating with us- they know how hard we work for every single syllable that comes out of Nate’s mouth. 

And this staff- they are amazing.  Cisco and Carla- well that’s a given- they have the biggest hearts you will ever encounter, and I really mean that.  What I haven’t mentioned is that the rest of the staff is actually pretty young- it’s not what you would picture when you think of a special needs school.  Most are in school; college, and even a few in high school.  They are required to volunteer at the center for a period before they are hired as employees.  And they are not choosing an easy job!  What’s more- they are so good with these kids.  They have incredible enthusiasm and energy, and what seems like endless patience.  When Nathan started giving hugs and kisses, these were some of the first people he doled them out to.   Carla and Cisco are not only providing amazing care to these kids, they are also passing on their knowledge to the next generation of teachers, therapists, and advocates.  Carla actually said to me that she is amazed by the trust the parents put in them, and I was honestly shocked into silence.  I have been very protective of my boys, especially Nate, since he can’t tell me if something is wrong.  I had in home daycare until last April; I knew everything that was going on with him all day.  It was hard to let go, and honestly, there is no one else that I would trust at this point.  Having a place that is not only safe, but also incredibly enriching for my son to go to is such a blessing. 

On our way out, I was telling one of the staff that Nathan made his speech pathologist and aid cry earlier this week.  We were leaving his school Christmas party (this kid has so much fun!) and as always I was telling him to say bye bye.  Which he never does.  All of the sudden he gives this halfhearted wave and says bye bye, clear as day.  Then he did it with his private OT, Miss Amanda, last night.  So I thought I would try it again today- he said it maybe 3 times to different staff members- it was such a happy moment.  He really is more engaged lately.  I know that Cisco Center has a lot to do with that.

 

O is for Obstinate- And It's Mommy's Middle Name

Nathan.

So we ALL want him to talk right?  I know that any type of communication is a positive thing, especially at this point, but I selfishly continue to want this communication to be speech.  I am picky. 

I received an email yesterday from Nate’s speech therapist at school that really upset me.  I don’t think that it technically “should” have, but as our marriage counselor says, there’s really no reason to “should” all over myself, I feel what I feel.  Anyway, it was a fairly routine correspondence, Nate’s next set of evaluations and IEP meeting are coming up (oh goody) and she was requesting permission to have an “assistive technology” evaluation done.  Basically, the school would provide him, if it is determined to be necessary, with a type of computer device to assist with communication.  I know that for many people this type of assistance doesn’t just “fall into their laps” like this.  Although truly we have done a ton of work to get to this point.  I should be and am grateful for all of the help we receive.  I will take anything they are willing to give him; I try to keep in mind that it is much easier to keep services that are given when a child is small than it is to obtain them as the child gets older.  Jack is a prime example of that. 

So what the heck is my problem?  This email made me cry.  Well duh, it’s just another “step”.  Another step towards accepting that Nate may not talk.  Now, in my response to the speech therapist, I broached the subject of still working on actual speech and she stated that using this device in no way means that they/we will not keep working on speech, and that this would hopefully actually be a bridge to him speaking.  But I know.  He has little “friends” with autism, the same age and older.  They are not whipping this device out for them.  Just my Nate.  And I refuse to accept it.  Not the device itself but the possibility of no speech.  I think that I will likely consult the advocate we used with Jack last year, who is wonderful, not because I think that Nate is being denied services that he needs, but because I want to make sure all of the bases are covered.  It’s worth the small investment to have that peace of mind. 

This revelation has kicked me into high gear.  Maybe I needed it, who knows.  I feel like I am working hard, but there is always something I’m forgetting.  For the past two years I have wanted Nathan in private speech therapy.  We have been unable to do it; our insurance covers 60 visits a year of PT/OT and speech combined, and I have chosen to make his severe sensory issues the priority as I really do think that they interfere with his ability to do the work that speech therapy requires.  He is just too distracted.  But enough.  I am tired of allowing these restrictions drive my son’s therapies; he is not getting all that he needs.  And I plan to change that.

I am calling a private speech therapist in the morning.  I am getting an evaluation.  We should have enough visits left after his once a week OT visits to cover at least two months of speech this year, and we will have to make that work.  In terms of next year, I am looking into enrolling the boys in both my and John’s insurance plans so they have dual coverage.  I have never used my benefits because of the sky high deductible, but if there is dual coverage, the other plan will take care of that.  And my coverage, I discovered today, allows for 60 OT/PT visits per year AND 60 speech visits per year.  That would be just wonderful, but I still have to figure out the monthly costs once our open enrollment information for next year is available.  But at least I have a plan, and that feels good. 

This boy will talk, I know he wants to and I KNOW that he can.

Struggling and Losing Hope

I really am struggling.  I feel kind of bad, because I have recently become aware that there are quite a few local “autism moms” who read my blog and find it inspirational.  I don’t feel like an inspiration right now, I feel useless.  I feel like I’m doing it all wrong.  I feel discouraged.  I feel exhausted. 

This is all about my fear for Nathan.  My limitations when it comes to helping him.  It’s about the fact that at age 3 and a half he is entering his third year of formal schooling.  It’s the memory of that first teacher telling me that I wouldn’t recognize Nathan in 6 months, that his progress would astound me.  Here I sit.  Still waiting.  I sat down and really read his IEP update from the extended school year last night.  He is meeting only one of 6 goals- receptive language, per the speech pathologist (who ironically is the daughter in law of Jack’s kindergarten teacher- the teacher emailed me to tell me how cute her DIL thought Natey was).  The biggest issue is consistency.  Even if he does something fabulous, getting him to repeat it is impossible. I know this.  There are days that the words just flow, and then nothing, sometimes for weeks.  I know what it is.  It’s the “noise” as I call it.  He can’t focus; the need for stimulation is so intense, especially tactile and visual.  He constantly wants us to squeeze him- his arms his legs- he will take your hand and place it there.  If you do it “wrong” he moves your hand back, as in, try again buster.  He waves things in front of his face at every opportunity.  He figured out that our mail is kept on a washstand by the front entrance of the house and has taken to shredding it so that he can dangle the paper in front of his face.  He has a “Woody” doll that has been getting a lot of attention- it’s because its arms and legs sway when he puts it in front of his face.  He goes after toilet paper, paper towels, napkins, leaves, grass, anything that he can dangle in front of his face.  If none of this is available (and God knows I try to keep it away from him) he now uses his fingers.  Several people have said “oh look he learned to wave”.  I want to smack them and say, “No moron, it’s stimming”.  Once again- grace.  I smile and nod.  If that’s what they need to believe then so be it- I don’t have that luxury.

If we could calm the stimming he could make progress I just know it.  That’s why I have tried the diets, the supplements.  Why I haven’t given up, why I keep adding them.  For the past two years.  To be honest, today I feel like giving up.  I gave him nothing this morning for the first time in years, and I know it won’t matter.  We STILL don’t have the mitochondrial cocktail, as Nate’s doctor needs to call it in to the new compounding pharmacy and hasn’t yet done so.  I spent 20 minutes on the phone with him again this morning- what was I doing?  Reading him what is in the cocktail he wants Nate to have.  Because he didn’t know/remember.  I’m ready to throw my hands up and say never mind; ready to give in. 

But something made me make the call to his doctor anyway.  In the midst of all of the frustration and hopelessness, I found the motivation to call him again, and give him the list yet again.  And I will give the supplements to Nate tonight; he missed one dose, big deal.  I will keep on going.  Even though I am ready to quit and spending more time watching Nate with sadness, feeling more grief, than ever before.  My actions are another reminder to me of the strength of a mother’s love for her child- all of this work is just an expression of that love- and confirmation that love is indeed a verb. 

Nope, Not Buying It Mommy

Today was Nate' first day of ESY (extended school year) services with the county.  This is provided when the skills the child is learning in school are considered life skill and there is concern that these skills will be lost over the large period of time off that is summer break.  I started talking to him about it yesterday, telling him "Natey go on bus to school", "Natey go school", etc.  Of course being that he's pretty much nonverbal it's difficult to know how much of this he was comprehending.  But this morning when he was snuggling with us in bed he said an approximation of "I go school", so I took that as a good sign. 

Not so much.

I have told you all that Nate has been really thriving at Cisco Center.  I mean the kid loves it there.  Below is Nate's progression to a meltdown over not getting in the car to go to Cisco Center this morning (captions of course added by me)




Let’s get in, you know, the car???

 




Uh, Lady, can ya hear me?  Do ya get it?









Fine, I’ll show you since you seem to be a little slow….











LET. ME. IN!!!!!!

 

It didn't help things that the bus was about 25 minutes late because a tree fell across a road last night.  He did go on the bus willingly when it eventually showed up, however he was NOT pleased.  I was happy to see some of his buddies from his regular ECI  class there.  The summer program is different hours, a different bus, different drivers, and a different school.  This is quite the transition for Mr. Natey, so hold a good thought that he has a good day!

What I Learned in Kindergarten

I haven't really written about the end of the school year for Jack, or expressed my thoughts about the over all experience this year so I thought I would take a few minutes to do that.

I sat down this evening and really went through everything the teacher sent home with Jack on his last day of school- you know everything they can find that has his name on it- locker label, book marks, pencils, all that good stuff.  Except I found what I consider to be a treasure.  The results of Jack's Assistive Technology Evaluation.

The evaluation states that Jack needs an AT device- in the form of supplementary aids, services, program modifications and supports.  He is to have daily keyboarding practice, he will be provided something call Pixwriter software which utilizes pictures to develop written work, and it will be made available for home use as well for homework as needed.  The school is to ensure that Jack has computer access in all classroom settings; he will be provided with worksheets in a digital format as needed so he can type his answers.

Well then, that's just AWESOME!!!!  Another school victory.

In my first "big kid" IEP meeting at the end of pre-K last year, I was quite overwhelmed.  Many people were talking "at" me and telling me "what my son needed".  And it wasn't much- it made me really nervous.  For his severe fine motor deficits he would have a pencil grip?  a slant board?  a lunch buddy?  That hardly seemed adequate.  The time with the special educator seemed very limited, OT assistance as well.  And no aid.  But in my eyes, at that point, these were the experts on what my child needed in school, so I accepted their "recommendations" and we moved on to kindergarten.

Man was I wrong.  Man were THEY wrong. 

It's often said that as a mom you are the expert on your child.  And of course this is true, there is no other human on earth who knows your child as well as you do.  I have fully accepted that for quite awhile now.  However, when we transitioned to the school setting, I guess I felt like the teachers would be the experts on my child in this arena, they are the ones watching him learn at school and seeing the areas in which he struggles.  I still believe this to be so to a certain extent- Jack's teacher this past year was certainly very aware and communicative regarding his struggles.   What I learned though, is that unfortunately, in the school's eyes, the only people who can really stand up and argue that "hey this isn't enough for my son" are his parents.  Jack's teacher could tell everyone and their brother that Jack needed more help, but until it came from me (and the advocate), nothing changed.  I believe this is also a legal issue, goodness knows I had to sign a consent every time they evaluated Jack for anything, but it makes me sad that the teacher who is with my son in this setting every single day is not given the power to advocate for what they believe him to need.  Or at least, they don't get results.  I hate to say it, but it's also a money issue- with limited funding for special education, the parent really has to shove their foot in the door and refuse to move it until the appropriate changes are made.  I was shocked the first time the advocate we worked with said to the administrators something like "just to be sure, you do have adequate documentation to get funding for additional support for Jack right?"  That's why I was getting letters from his OT, pediatrician and developmental pediatrician recommending interventions.  Not because the school didn't already know what he needed, but because the people who dole out the funding needed "documentation".  There is a fundamental problem here- shouldn't the educators' recommendations be trusted?  Isn't that why they are there?  Because they are able to assess these things?  Apparently not.

To many of you who have children older than mine, this is likely old hat.  However I have made several friends and have plenty of readers who have much younger children with autism.  To you I say this- learn from my mistakes and misconceptions.  In every area of life YOU are the expert on your child.  Even if you believe that your child's teacher knows what his best for him/her, YOU have to ask for it.  Demand it.  Because it is not just what your child deserves, it is their RIGHT. 

Had I let things remain at the status quo for Jack this year, he would be having an hour of special education a week, which was actually time with an aid, not the educator.   He would not be in speech.  He would not have been evaluated by the alternative technology team.  I do believe that through his updated evaluations, he would have received further aid support, reading assistance, and math accommodations.  That being said, they weren't even planning on doing either the speech or assistive technology evaluations.  But because I requested this, and made a good case for each, Jack now has speech twice a week, and is going to be provided with technology that will assist him in generating his own work instead of relying on a scribe and hoping his handwriting becomes legible, someday.  I mean, he's been in OT since he was 3- the bottom line is that he's not ready to write.  You can't force that, you just can't.

I am not trying to toot my own horn, I am by no means an IEP expert.  I do believe that I am an experienced autism mom at this point though and I want to empower other autism parents who are struggling or just starting on this journey.  Sometimes I can't believe how far we have come this year.  When Jack starts first grade, the school will be well prepared for his needs, and I will feel confident that all issues are being adequately addressed.  Not half bad for a year's work!!

Worth It

You know, when I signed Nathan up for Cisco Center initially, it was because I needed daycare, and because they were a special needs facility.  And Nathan liked it fine, he was always ready to come home in the evenings, but I think that's a good thing.  Everyone seemed nice, and I have been happy with my decision so far.

For the past week, Nathan has been going to Cisco for full days as his ECI class is out until extended school year starts on July 8th.  I have been very stressed out about the money- it costs $500 a week to send a child there full time.  And as I expressed to Cisco, who runs the center today, I get why it costs that much.  My child needs more individualized attention, he needs sensory stimulation, he needs many accomodations.  I mean, how many places have multiple swings upstairs, and an OT and speech therapist on staff?  Cisco Center is also meant to be more of a school than a daycare, so that also justifies the cost. They have a curriculum, and they have weekly themes.  I know that when Nate comes home with sand in his hair it's beach week!  It's just that constant dilemma of special needs children needing so many things, and these things being more expensive, because, well, they need to be.  It is going to be very difficult to keep Nate in this situation for the summer.  I have applied for grants, but won't know the outcome until probably August.  Today Cisco suggested sponsorship, asking people to sponsor Nate for a certain amount each month- it's a tax deductible/donation type situation.  But while it sounds like a great idea in theory, everyone has expenses and I just don't think it's very realistic right now. 

Here is what I know.  He LOVES it there.  John and I are both pretty sure that he was trying to say cisco this morning multiple times, and at one point we heard "fun" in there too.  Yes, this is the morning after I was talking about his regression.  I know.  Almost every day I pick him up he is soaking wet (with water)- at first I was like, what??  But really this is because they are providing him with the sensory play that he craves and needs- outdoor water play.  I know how Nate is- came downstairs from putting him to bed tonight and found my water glass on it's side and water all over the floor.  I didn't wonder for one second how that happened- he's my water boy, loves to watch water pour, move, drip.  It's a visual stim for him.  They made "donuts for dads" this week.  When I dropped Nate off this morning, he walked right over, sat at the table and was given the task of "shaker"- shaking the cooked donuts in a bag of powdered sugar to coat them.  And the bag was labeled "gluten free", so he only had contact with the gluten free donuts.

And these are just the benefits for him.  Last Friday he and I attended the end of year party at the center.  I met many of the parents of the kids in Nate's ECI classroom.  Made connections that will likely be very important for him and for me.  Connections with other moms that are walking in shoes very similar to mine. 

Cisco contacted myself and several parents a few weeks ago asking us if we would be interested in testing a communication app for children with autism.  The software developer had contacted him, I am guessng because it is a designated special needs center.  The requirement to do the testing was to have an ipad, so I said sure.  Unfortunately, it needed to be an ipad2 or newer, and ours is a 1 (which is perfectly fine for most of the apps we use) so I told him we were out.  Then the developer comes back and says he will loan me a new ipad with retina scan while we are working with the software and then donate it to Cisco center.  Several moms and I spent about an hour and a half walking through the app today (it's not on the market at all yet), not just learning how to use it, but offering the developer suggestions on how it could be made more user friendly and relevant for our children.  It was pretty cool. The other cool thing was that when I started offering suggestions, the other moms were nodding their heads and agreeing. For instance, there were about 200 possible things a child could find and touch in order to communicate their needs.  I was sitting there thinking that this was way too much for Nate to sort through right now, that he needed one screen of maybe 10 things at most.  When the other moms agreed, it made me realize that in this center, Nate is not "the most behind".  He is truly with peers.  And that's a very unique thing to find a mile from your house! 

So somehow, we are going to make this happen for the summer.  Don't get me wrong, if the grants come through, our net cost will not be horrible, it's just the upfront cost that is getting us.  But....I have never seen Nate excited to go somewhere before.  I have not seen him in a situation where he really seems to belong before.  As a parent of a special needs child, this is priceless. 

Decisions, Decisions

As parents, we all want to provide for our children.  As good parents, we want to offer opportunities for growth and development outside the necessities.  But where is that line?  What is a necessity and what is an enrichment activity?  It's a tough call.  We live in a pretty upper middle class area where you feel even more pressure as a parent to have your child enrolled in multiple extracurricular activities in order to offer them a level playing field to that of their peers.

Add Autism to the mix and that line between enrichment and necessity becomes even more blurred.  There have been many different types of therapies researched for kids on the spectrum that have been found to be beneficial.  There's no way I can list them all, but here are a few:  equine therapy, aquatic therapy, vision therapy, occupational therapy, speech therapy, social skills groups, special needs sports.  The pressure on an autism parent increases because like all potential therapies for our kids, we feel a desperate drive to provide these things.  What if one of these activities really helps one of our children to make a breakthrough? 

So of course I want my kids involved in all of this.  Never gonna happen.  The boys are both in OT, which is mostly covered by insurance, but just to give you an idea, that alone (and this is just copays) comes out to $45 a week.  OK.  So swim lessons, not so bad, right?  WRONG.  For a special needs child, lessons range from $40-50 for each lesson. I have checked with all 4 local special needs options.  Equine therapy, about the same.  The boys could have speech covered by insurance, but with our insurance, they may have 60 sessions each year a piece and this encompasses speech, occupational, and physical therapy.  How on earth does that make sense?  Oh, I see your child has greater deficits than the child who only requires OT once a week.  I see your child needs both OT and speech.  OK, they can have both, but they can only go to each twice a month.  Now how is the child with greater needs going to make progress given this set of circumstances? 

Now, add to this....wait for it...two kids who could benefit from all of this.  Can someone explain to me how on earth I am to provide these opportunities for my children?  Because you see, they already require daycare, special needs daycare and guess what?  You got it- because they have special needs, it's more expensive.

When is someone going to give our families a break?  I know that our children have special needs.  I know that teaching them requires giving more of one's self.  Believe you me, I know.  Thing is, my work didn't start paying me more in order to assist me in taking care of my special needs kids, last time I checked there isn't a larger tax deduction for a child on the spectrum, and I'm pretty sure that no one has set up a trust fund for either one of my kids without telling me.  So HOW am I supposed to choose which child gets what?  Which child needs these things more?  If I won the lottery, I would be giving money to every autism family I could find.  I would be setting up a "therapy fund" for other kids with autism.  It continues to sicken me that on diagnosis, when I asked what I could do for my child, the doctor replied "how much money do you have?"

Sickens me. 

Frequent Flyer

Believe it or not, this is not about Jack and airplanes.  Well, it kind of is, since everything is about Jack and airplanes, ha. 

I went in to Jack's school AGAIN today, for another IEP session.  Before I get into that I will say that I volunteered in Jack's classroom yesterday and for once found it to be a fairly pleasant experience.  He had the special educator with him for "workshop" time (which is what I was there for) and she was fantastic with him.  If you are able to keep Jack somewhat on task when mommy is visiting you're doing pretty well.  I was playing a reading game with the kids and she even helped me a bit when a couple of unruly kiddos weren't doing a very good job of listening.  Of course I am afraid to pull out the wicked witch voice with someone else's kid.  Anyway, it was kind of bonding, which is a good thing.

So this morning, the advocate and I met with the full IEP team.  This team included Jack's teacher, the OT, the PT, the speech pathologist, the special educator, the school psychologist, a psychology student, the assistant principle and the school nurse.  Not intimidating at all.  The meeting lasted less than an hour and was really the least complicated one thus far.  It was basically a session devoted to planning Jack's next set of evaluations.  He is due to have them completed before his sixth birthday.  Also, his diagnosis needs to be changed from developmental delay to something more specific at this point.  I came home with loads of paperwork to fill out regarding his behavior and focus.  His teacher will fill out the same.  There are a mind-boggling number of different evaluations to be completed by the various staff members.  Luckily they have 60 days to get it all done.  I anticipate Jack qualifying for a significant increase in his services after this process is completed.  And it feels really good to get it all started.  I feel like I am slowly becoming more familiar with this process and it doesn't hurt that I am getting to know the team.  As I see them with Jack, my confidence in them is growing.  For the moment we seem to be on the same page.

Tomorrow I will be going to yet another meeting.  This one is at the special needs daycare center I have been considering for Nathan for his afternoon care.  I found out that two of his little ECI classmates are already going to this facility after class on the same bus Nate is on, so this is a huge comfort.  That being said, I am feeling very bittersweet at the prospect of having both boys out of the house all day.  I love having Natey nearby, knowing that if he gets a boo boo I can kiss it, or if he is trying to say a new word I will hear it.  It's hard to give that up. And I also have to consider the fact that it's already March.  Even if this center works perfectly for Nate's half days, summer break is right around the corner and then I will need care for Jack as well, and full day care for Nate when he is not in his extended school year program.  There is no way we can afford this center, full-time for both boys.  It would be over $3000 a month.  The center is considered a higher level of care than a typical daycare center as it offers things like social skills groups, speech, and other developmental activities.  So we may be eligible for some type of aid- grants or something.  The director can assist in this process.  Fingers crossed on that front.

So as you can see, I am really bored.  Ha.  I am also a busy little bee locating ipad apps that are appropriate for the boys and trying them out.  Jack and I tried a reading program before bed last night and he rocked it.  I am so excited to have this tool!

Mixed Emotions

So how is one supposed to feel after a meeting like the one I had today?  I have said it before and I will say it again- it is really hard to sit in a room of people and listen to them list all of your child's deficits.  And it will never never get easier.  After almost 3 years of this with Jack I have come to realize that.  So this afternoon was really rough- I always come out of these meetings feeling like I've either been beaten up or run about 2 miles more than I am capable of.  Just exhausted, emotionally and physically.  And this IEP meeting was almost two and a half hours.  Jack's difficulties were laid out before me- his lack of focus, inability to stay on task, the fact that he is slowly falling behind academically, his social awkwardness, his fine motor delay, his lack of motivation to complete tasks.  This is the bad part.

Here is the good....

For a mom who has known these things about her child for a long, long time, hearing professionals not only acknowledge all of this, but commend me for getting him this far is an enormous relief.  This makes me feel a little guilty, but....think of it this way.  What if you knew something was going on with your child?  But it was your first child, and those around you were telling you things like he's just really smart (true), he's very spirited (true), let him cry it out, he can't do it forever (wanna bet?), just take the airplanes away (ha)?  I remember asking his first preschool teacher if she noticed anything different about Jack. She said no.  Clearly she wasn't paying attention.  His next teacher noticed and finally I had a bit of validation.  Even so, I have never felt like his "team" has taken his issues seriously enough.  With Nate it's clear- he's not speaking, he's constantly stimming, he doesn't respond to his name.  With Jack it was never like that.  But I was the one trying to help him focus on crafts, games, puzzles, etc.  He would listen to books (about his areas of interest) for hours if we would keep going.  All this other stuff- he screamed when I tried to do these things with him.  Every single thing we ask Jack to do is a huge battle and it always had been- but he is charming and smart (and precious, sweet, and perfect), and he could mask much of this, even in a half day program.  While at home, life was basically a constant struggle to prevent or stop the tantrums.   Who am I kidding, it still is.   In Pre-K I felt like they were acknowledging the issues quite a bit more, but it felt like they were saying "send him on to kindergarten, let's just see what he does."

Well here we are.  I told the team today that I have been waiting for this moment for a long time.  I knew it was coming and wondered how long it would take.  Turns out, about 5 months in a full day setting.  Today the entire team agreed that Jack needs additional adult support for language arts, morning work, social studies, science, and math.  In case you're keeping score- that's all academic areas.  Upon hearing this, I burst into tears- maybe the team thought I was sad, but I wasn't- I was just so relieved.  I looked over and his teacher was crying too.  No joke.  You could tell she was relating to our situation- once a special needs mom, always a special needs mom.  Thus far Jack has been getting assistance in language arts only.  He will now be pulled to a small group for reading, to a room with an aid for math, the special educator will be with him for social studies/science and the aid will be with him for language arts and likely morning work as well.  This feels like a bit of a piecemeal solution, but it is a solution nonetheless.  And he has his assessments coming, which will likely qualify him for further services.  All of these additions are coming before that even happens, which gives me great hope for this school. 

The advocate?  I have a whole new perspective.  I was still kind of wondering what exactly she would do.  Here are the things I observed:
1.  Her being the "nitpicker" about language and inclusions in the documentation allowed me to be able to discuss the big picture issues with the team without being the "bad guy"
2.  She knows how things need to be phrased to make sure that they are done, she knows to ask them if they require any further documentation in order to get funding for Jack's needs
3. She caught something BIG today.  When I first discussed his IEP with her, I told her my concerns, which I blogged about last week.  That they were only allotting 30 min/day of special ed services.  I told her I felt that he needed more time with an aid and she said that that was irrelevant to the special ed services section of the IEP.  I was confused but figured I could ask about this further today.  Well, in the meeting, she inquired about what was being done during these 30 minutes each day.  The educator stated that this was the time the aid is with Jack.  Ummmm.....turns out this was a BIG no no.  The special educator has NOT been working with Jack directly, basically at all.  All of his special ed time has been with the aid, and the aid time should be separate from the special ed time, which is the time when the special ed TEACHER should either be coming into the classroom or pulling Jack out.  So this was documented, and now the educator will be spending this time one on one with Jack on a daily basis AND the aid will be coming in.  I NEVER would have known to call them out on that.  In my eyes, he was getting jipped. 

So I am glad I hired the advocate.  I am glad that the team is acknowledging the full extent of Jack's limitations for the first time.  While it's hard to hear, in Jack's case it is way overdue.  I am hoping that now that the academic team has seen this, and they agree that he needs more help, we are on the right path.  Next meeting is Feb. 28th, to finalize the assessment plan.

The Woman's Got Game!

OK, now I have to tell you, when we left Nate's ABA program for the ECI program the 3 year olds graduate to, I was skeptical.  He was one on one with an aid in ABA, and we had Miss Kristen who came out once a month.  And we loved us some Miss Kristen!

So when Miss Gwen knocked on our door for the first time....well, I was having the usual issues with change.  Miss Gwen comes an hour a week on Mondays.  It is almost becoming a spectator sport among those who love Nathan.  My mom comes most Mondays, and we say that it's because we all want to learn Gwen's techniques, but honestly, as my mom said today, it gives us all such hope. 

What this woman can get Nathan to do!!!!!  I mean first of all, she has him sitting in his little cube chair for an HOUR.  And focusing pretty much the whole time.  She does give him some short down periods, but for the most part it's work work work.

When I say work, what I actually mean is "play" for neurotypical kids.  She gets him to play with toys appropriately.  Today it was race cars going down a ramp (not to brag, but I can get him to do this too, lol), doing a 10 piece puzzle, building a block tower repeatedly and not only that but tricking him into wanting to do it so badly that he had to strain and reach to get the blocks- which he did.  They worked on color sorting, they played peekaboo. 

And this is the one that kills me- she got him interested in bubbles.  He has been ho hum about them forever.  In case you didn't know, bubbles are typically one of the most motivating activities for all kids, but especially kids on the spectrum.  Without this tool, it's kinda like what do I use as incentive now?  She was blowing the bubbles one at a time and he was reaching to pop them.  She repeatedly put the bubbles away- he asked for more.  We have been working on a communication technique with Nate- it's so simple that I don't even really understand why it works.  I just know we have been using it at mealtime, and Gwen used it incredibly effectively today.  It is literally a laminated sheet of paper with three dots on it.  The idea is that when Nate wants something, you take his finger and touch each dot I-want-cup.  The goal is to get him touching each dot when he wants something and eventually filling in the words that go along with it.  Well he has "I want" down pat.  We are working on the nouns, he has a few- like cup, pretzel, chip, and if that isn't what he wants he usually gets frustrated and just starts pointing in the direction of the kitchen saying "that".  What a huge improvement this is!  So today with the bubbles, when Gwen started putting them away, he would say "I want", but not be able to fill in "bubbles".  Eventually he started looking at her and pointing to each of the three dots.  He knew that he had to touch ALL THREE.  That "I want" wasn't adequate.  So he substituted the dot for the word, and when he did so, she gave him the bubbles, and repeated over and over "I want bubbles".  The hope is that he will soon replace the dot with the word.  But it's amazing to have him doing that much.  Every little step is just so so huge.  I can't emphasize this enough to parents of neurotypical kids.  I remember how amazed I was when Jack was developing speech (very very very quickly).  I can't express how hard it is to watch your child struggle so much with communication- every time we jump even the smallest hurdle- it feels like I just WON a marathon. 

And you can tell Miss Gwen feels the same about her "students".  She came in today a little teary saying that another client had his/her first meaningful speech in 2 years during their session today.  Can't. even. imagine.  Miss Gwen does have one magical tool- the cube seat with a desk contraption that goes across it.  Basically Nate is a captive audience.  Starting to think I need to get me one of those!  Of course, I'm pretty sure the desk isn't magical, Gwen is just amazing.

Take That!

OK, so first and foremost, I stopped the leucovorin on Friday morning.  Saturday morning we made it to 4:30am (as opposed to 1am), then he took a 3 hour nap on Saturday.  Sunday morning he made it until 5am, then took a 2 hour nap today.  Let's pray this trend continues.  Feeling good that I figured this out before we all went stark raving mad. 

In even more exciting news, Nathan has apparently decided he would like to take this opportunity to say "screw you" to the 1st percentile for speech and comprehension.  And he decided that the best way in which to accomplish this was to blow mommy and daddy's minds this weekend.  Here is what we have heard:  up, eat, pat, nose.  Those are definite, and for the first time, all this weekend.  Pat and nose came from some of his ABA exercises, having him "touch nose" and "pat head".  I ask him to do these at least a few times a day, and yesterday morning he decided to do them to me instead of on himself.  So he touches my nose and nonchalantly says nose.  Then pats my head and says pat.  Who is this kid???  He said "open" at OT.  He also has "remastered" ready, set "go".  My legs are sore from lifting him so many times, but I'm good with that.  I went to sit down after doing it like 15 times last night and he came over to my chair, grabbed my hand and said "come" until I laid back down and did it a few more times.  He also easily transferred this "game" to another purpose, which is an even better story. 

I rarely mention our dog, Riley, but yes, we have a dog.  We got him literally the week we returned from our honeymoon, so we have had him for about 8 years now.  He was our first "baby", the sun of course rose and set on him back in the day.  He has tolerated a lot from the boys over the years, and we have tolerated a lot of his barking waking them up.  He usually goes after a bone if he wants to play these days and will literally drop it in your lap and then begin a staring contest until you get up to play with him.  Last night he went for a squeaky toy which he hasn't done in a long time.  He was having a "puppy spurt", running all over the downstairs and basically going ape.  Nathan could not stop laughing at him.  So as I was throwing the toy, I started trying ready, set, .....and he got it right away....go!  After a few minutes he started picking up the toy when Riley dropped it and throwing it for him.  Didn't go very far and Riley seemed a bit confused by this.  Meanwhile, John and I were both staring, mouths wide open.  I have never seen Nate directly interact with anyone besides John or me at home, let alone the dog.  This was huge for him!

All such positive changes this week.  And tomorrow I increase his dose of methylcobalamin again.  Keep your fingers crossed.  This progress is surely no coincidence.  I am hoping for a really good week.

Unspoken Words

 

Nathan and I have an amazing bond.  Of course Jack and I do too, but with Nate it's different.  I feel this tremendous need to protect my little boy, to help him speak and express himself, since he isn't yet capable of doing it for himself.  Think of those first few months of your child's life, when they couldn't speak and you had to rely on expressions, crying, gestures, etc to know what they wanted.  No, we're not in that place anymore, but we certainly lived there for a very long time.  And the language Nate has now remains limited, and his use of it does as well.  So I have found myself in the unique position of continuing the "baby" phase for a very long time- or at least this aspect of it.  There is no one on earth who can read this little boys wants and needs the way I can. There is no one on earth who can fulfil them as well or as quickly as I can.  And Nate is well aware of that.  He comes to me whenever possible, and then to daddy.  It is apparent that he feels no need to communicate with anyone else, except his sitter and teachers when we are not there, and sometimes his grandparents.  What a huge responsibility this is.  On top of interpreting all of this, it is also my job to help him learn how to communicate more effectively.  This is true of all parents, but when you put it in the context of classic autism, it becomes a whole new ball game.  I was working at this very hard before, but now that we are participating in this "more than words" seminar, it's become a third full-time job.  And it is the most difficult of the three by far.

As parents of infants, we take so much of their development for granted, we read the books, we celebrate the milestones, but we never really think that they might not come.  Until it happens.  For instance, last Friday my neighbor and I were walking back from taking the kids to the bus stop, and she said something like, "it's amazing how fast the language starts coming around 9 months" (she has a little guy).  Then she clapped her hand over her mouth.  I just smiled and said that's completely true.  Hey, I watched it with Jack, and Nate.  I know what she's talking about.  I just never thought we would lose all of that progress and now be struggling with this same milestone over and over again. I was talking to Nate's speech pathologist about his words, and I mentioned that it feels like every time he picks up something new, something else drops off.  She said this is extremely common in children with autism.  For instance, the first new word he picked up when we started with the infants and toddlers program last year was ready, set, "go!".  Guess what I spent this weekend working on with him?  And it's harder this time- I could use a car rolling last year, this year I have to lie on my back and do it by lifting him up over my head with my legs on "go".  He needs that incentive.  Every single word we gain needs a similar motivator.  And the consistency has to be well, consistent. 

I am learning many new techniques in the seminar.  And working my tail off on applying them in daily life.  Really it feels like creative cruelty, or professional withholding.  Poor Nate.  But some of it is working.  Every time he wants something, every single time he says more (which he knows used to thrill us by the way- I am sure he's pissed that it doesn't work anymore), it becomes a 5 to 10 minute process of "more what?"  If it's cup or pops, we're golden.  Anything else, we're screwed.  The closest we get to a name is "and that, and that, and that".  Which is a huge improvement, but helpful? Not really.  If it's pretzels, I hold them out of his reach and wait, and wait.  Then after a few minutes of nothing, I approximate the "p" sound, sometimes this gets some repetition, which is great.  If not, then I say the full word.  The point to the bag and say more.......if still nothing then I pick up his hand, physically point his finger to the bag, say pretzel like 50 times, and basically jump up and down like this is the best news ever.  I have no problem with doing this in theory, it's just the whole 10 minutes to get a pretzel to the kid thing that is driving me crazy.  Another technique is working on "choices".  He usually can't verbalize which he wants, the actual goal for him is to see him scanning each item visually and eventually somehow indicating which one he wants.  The scanning thing is huge, kids on the spectrum are in their own world, so observing what is around them is a big step.  He is doing pretty well with this.  Granted, his choices are pretty obvious- I hold up pops, and then maybe a sock.  It's not like he's torn. 

I'm applying these same concepts with books at bedtime, with songs at lullaby time, with parts of toys during playtime, etc.  One other technique is to basically "put words in his mouth" while literally sitting at the same level on the floor as him with our eyes at the same height.  So if I say "time to go night night" and he screams, I say "no night night mommy!"  Help him express himself with words, and also let him know that I understand.  I know these seem like really simple things, but when your child has little desire to communicate, little desire to use words, these interventions are a big step. 

Tomorrow is Nate's first "big boy" IEP meeting.  Blah.  We already have the evaluation, they send it home with the child ahead of time so the parents aren't shocked.  Good thing.  Of course, as always, reading this crap was really comforting- yeah right.  They put my boy's receptive language in the first percentile and his expressive language in the second percentile.  They literally stated that if measured by what age level his understanding is, there has been no progress in his receptive language.  At all.  They put him at 11 months last September, and that is what the Child Find evaluator put him at last month.  I call BULL _ _ _ _!!!!!!  Either he had a bad day when they observed him in class, or they "over" evaluated him the first time.  Because if I had told him "go bye bye" last fall he would have stared at me or more likely at the floor.  Now he either throws himself on the ground in protest or if I say "go bye bye with mommy" he stands up and takes my hand.  And this is true in every aspect of daily life.  He knows and understands SO MUCH MORE than he did at this time last year.  So for the first time, John and I, while still saddened by the numbers, were able to shrug off some of this evaluation.  Because we know our son better than they do.  And they are going to put the worst case scenario in writing in order to get him the best services available.  And that's what I want for him.  So I guess I just have to take it.  And keep working, and working and working.