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.  

My Amazing Nephew- Engaging Nathan

It has been a super eventful week, sorry if I haven't been around much.  This last Sunday was my baby sister's baby shower up in Pennsylvania.  One of the best parts of the shower for me was that my older sister and her kids came!  They live in Indiana and we don't get to see each other too often, so it was a real treat.  They spent several days at the Smithsonian, but Friday night they came to our house for a very casual dinner before we headed up to the shower the next morning.

I love that I never have to explain a thing with my sister, first of all.  She is a special educator, and even if that wasn't the case, she has made it her business to stay informed about what is going on with the boys.  Not only is she very aware, but so are her kids.  They are so good around the boys, very tolerant and considerate.  We last saw them at Thanksgiving, and at the time, my sister's youngest son, who is about a year older than Jack was really working on getting Nate to "play". 

Nate is a very affectionate little boy with people who he knows very well.  However he is very distinctly uninterested in other children for the most part.  In other words, he ignores them.  It has always been pretty tough for Jack, and he has for the most part given up on trying to play with his brother (and yes, of course this makes me sad).  It has to be said that they are a tough combination, as Jack really doesn't understand personal space, etc, and Nate doesn't want anyone too close.  Anyway, at Thanksgiving my nephew was tickling Nate, and he was laughing like a little maniac.  Usually if another child tries to tickle him he screams and runs, wants nothing to do with it.  So this was great progress.

My nephew clearly came to our home on Friday with a mission.  Nate WAS going to play with him.  He did not give up all evening.  At times, both my sister and I reminded him to read Nate's cues, like when he screamed or ran away (lol).  But for the most part, Nate was interested in G- he giggled like a maniac when he tickled him, and he did run away and throw himself in my lap, but he did something very different from what he normally does when he is in this situation.  He turned around to see if his cousin followed him, and kept laughing.  Then he got back up and engaged with G in this "play" again, and when he needed a break he would run back to my lap.  But it was very clear interaction- very much so back and forth.  And without question it was a huge change for Nate.   He even attempted to say his cousin's name at one point

Me being me, I found myself crying.  Just seeing Nate respond to another child positively, to show interest in continuing an interaction, was amazing.  And his cousin was LOVING it.  At one point, my mom asked G what his favorite thing of the day was- meaning which Smithsonian exhibit of course, and he without hesitation replied "Nathan".  Sob.

When the kids left, Nate stood in the window watching for a long time.  He was still laughing.  He kept turning back to me and grinning, it just melted my heart. 

I want to say thank you to my nephew for being the amazing little boy that he is (this is true for my older nephew and my niece too of course), and I want to say a special thank you to my sister and brother in law for raising such a considerate, loving, and frankly, persistant little boy.  He soooo made my week!!

Here is an awesome pic of my mom, me and my sissies from the baby shower.  I love these ladies more than words can say, I don't know what I would do without them!  They keep me sane and encourage my craziness and hold my hand through the most difficult times in my life.  Love you all so much!

High Functioning Autism: Yes Jack Can Speak, But He Struggles In Many Other Ways

My friend Joann and I have talked about this several times lately- the fact that parenting Jack is infinitely more difficult than parenting Nathan.  It doesn’t make intuitive sense.  Nathan is clearly way more affected by autism than Jack, or to an outsider, it may seem that way.  Honestly, I don’t think it’s so.  I think Jack’s life is impacted severely by his autism.  As he gets older, it’s getting harder and harder to watch.

The issues that Jack faces are considerable, but of course when one looks at the fact that Nate cannot yet communicate well, that he is so impacted every second of every day, and Jack is in mainstream first grade, it may not seem that way. 

I want to make it clear that I am extremely proud of my boy- he was recently “dismissed” from his special needs reading group, which mean he has caught up to his grade level- how huge is that?  Especially for Jack.  I talk about all of the “noise” that there seems to be for Nate, how many distractions there are in his own little head.  The same is fully true for Jack.  When John and I went away for a night last year it hit us just how quiet our hotel room was- that is because both of the boys almost continuously hum.  It’s verbal stimming.  Jack also does quite a bit of physical stimming- jerky movements, still some flapping of his arms, lots of jumping.  I’ve grown so used to it, that I forget how significant it is until we are out in public.  Do you ever wonder what your child must be feeling?  What compels them to do this?  I know they are seeking input, but I often wonder what that experience is like. 

Jack’s obsessions have driven me crazy for a long time.  When he talks about something, he TALKS about it- ALL THE TIME.  24/7, it never, never, ever stops.  He repeats the same things, lines of text or quotes from movies about the subject over and over again and then, since he is smart enough to know that you might tune him out, he requires you to respond to him.  He will repeat the same thing in your face over and over and over until you respond.  For a long time, it felt like John and I had lost our bond, because when we finally got Jack to sleep each night, we fled to separate corners of the house, really didn’t interact much at all.  It’s taken a long time, and lots of counseling and reflection for me to realize that we are running to opposite ends of the house because we literally don’t want to hear ANYONE talk.  Our ears are ringing.  RINGING.  It is that intense, almost all of the time with Jack. 

When someone new meets Jack, you can literally watch the progression.  It starts with “wow, he really knows a lot about blank, he must be really smart”.  Then a few minutes in, there is the amused smile.  Fast forward a few more minutes and the smile is frozen on the person’s face.  This is not to say that they don’t like Jack, but that they realize he is not going to stop.  And he doesn’t.  I can redirect him a million times; it has little to no effect.  It is really, really hard.  And the thing is- he is not being naughty.  He is rarely naughty.  How do you scold a child for something that they cannot control?

This impacts Jack’s life and well-being greatly.  He is happy in his world, I think.  But the more and more I watch him, the more it breaks my heart.  How must this feel?  To feel literally incapable of thinking about anything else?  To be this compelled to talk about the same thing, use the same words, over and over, to never feel satisfied or done?  If his words are this intense, how intense are his thoughts?  I don’t think I could tolerate living that way. 

And he is, Jack is living with this, and is in mainstream first grade.  It causes many issues for him.  He has a full-time aide to help keep him on task; this includes his walk to and from the bus.  He struggles to complete his work and quite often doesn’t. 

And socially?  He has been invited to two birthday parties all year.  One party was for a little boy he met as Cisco Center last summer, one for an old friend of mine’s daughter. So, in fact he has been invited to no birthday parties by kids at school.  He told me for weeks that one little boy was his best friend at school, but then in a moment of conversation, when he was really sharing with me he said that the boy told him that he sometimes likes him, but that he won’t invite him to his birthday.  Broke my heart.  He does not recognize these social “snubs” for what they are, but I do.  And I want to help him, but how?  I work full-time- I wish I could be in the classroom volunteering and keeping an eye on how things are going from a social perspective, but I can’t.  I wish I could be that mom that has time for play dates on a regular basis, but I’m not.  Most of my friends at this point are in the special needs community, which makes perfect sense considering our situation, but those are the main people who we socialize with on the weekends.  I mean, Nate has a birthday party to go to at least once or twice a month, because ALL of the families at his school are special needs families and we all invite all the kids- because we know what it’s like not to be invited.  It’s because Jack is with typical kids when he is in fact, not typical, that he struggles in this way.  He may not feel the impact now, but at some point, I am sure he will. 

So even though Jack is functioning, with assistance, in mainstream school, his struggles are many and significant.  I sometimes get caught up in worrying about Nate and lose sight of this, so I guess I am giving myself a bit of a wake-up call here.  It is so hard to strike a balance with these two kiddos with such different, yet substantial issues. 

A New Member of the Family

You are going to think I’m nuts, and you may be right.  I always wanted a third child, but we made the decision not to move forward with this plan when both of the boys were diagnosed with Autism.  It felt like it would take too much away from both the boys and any other new little person who might enter our family.  Lately I have been wanting a dog- really really wanting one.  We have a Labrador who is 9 years old- we got him about a week after we got married.  I love Riley dearly, but he is a Labrador.  He is BIG.  I grew up with dogs, always the same breed- miniature long-haired dachshunds.  My mother will shamelessly admit that when they moved back to the east coast they favored ranch style homes that would better accommodate a dachshund (stairs are rough on their backs).  My parents have another doxie now, and so does my little sister.  So I begged John, began showing him pictures of really cute puppies and luckily he is a sucker for animals.  He easily agreed that we could add a dachshund to our family when we found the right one.

My desire to get a dachshund was partly selfish, but I also felt very strongly that it would be good for the boys.  The boys love my parents’ dog, while they are somewhat intimidated by Riley- he is the sweetest dog ever but his tail could be used as a lethal weapon.  A dachshund is small, non-threatening, on their level. Any type of interaction is a positive thing, and with a doxie it would be hard to avoid. 

Somewhere along the way I decided I didn’t want a true “puppy”.  I didn’t really want to adopt a dog older than a year either, but I was concerned about bringing an 8 week old, tiny puppy into our household for numerous reasons.  I was afraid my little boys who don’t have the best self- awareness might step on a puppy, I was afraid they might be too rough, and I was also afraid a little guy would be too time consuming and thus take too much time from the boys.  I found the perfect compromise recently with our new dog “Darby”.  He is 7 months old.  He is mostly potty-trained (two accidents in 5 days is pretty good in a new setting).  He is mostly crate trained, other than the 10 minutes of yipping each time he is put in the crate.  He is not chewing TOO much, although he does appear to like shoes- particularly mineJ. 

Jack was sooooo excited to get Darby.  He wanted to name him “Ben”, which I love, or…Bennett, or Bentley, or Bailey.  When I picked Darby up though (it took 9 hours of driving which was well worth it) he had been called Darby for 7 months- and he was responding to his name when I said it.  I of all people appreciate this.  He is doing a better job of this than either of my boys!  So I believe I have convinced Jack that it’s best to stick with Darby. 

In these first few days I am already seeing reactions from the boys that are very positive.    The first night Darby was home, Jack brought his water glass from the bathroom to his bedroom and set it down, asking the puppy if he needed a drink.  He is always checking on him, which is exactly what I was hoping for.  Nate didn’t notice him so much the first few days, and believe me, Darby was sniffing him constantly.  He is starting to look at Darby more, and last night when Nate was sitting on the potty, I sat in front of him with Darby on my lap.  Nate reached out and stroked his paws very carefully, and then patted his head.  So sweet!

Riley and Darby are doing very well.  There are some squabbles over toys and bones- Darby holds his ground surprisingly well despite the fact that he is 1/6^th the size of Riley.  Darby is my little shadow and barks every time I leave the room- cute as it is, I am hoping he gets over this in the near future, as I am constantly running around, especially in the mornings.  Darby is now my little work buddy, he sits with me all day, content to just hang out.  It’s funny; all of the websites we consulted about introducing the two dogs warned us that the puppy would constantly torment the older dog.  In our family it is the exact opposite.  Riley is way more rambunctious than Darby.  Although things are getting calmer day by day. 

Even John, who was, I think, the most skeptical about this arrangement is totally in love.  I mean he loves this dog- he came into our room last night, where I had snuck Darby onto the bed while I was reading and he just started laughing.  Neither of us wanted to put him in his crate- however I know how very stubborn and spoiled little doxies can get- if we give an inch this little guy will walk all over us! 

I had forgotten just how much I love having a dachshund in the house- this mama is happyJ!

Social Graces and Nonverbal Little Brothers

I haven’t posted about Jack in a while.  It’s kind of hard to explain, I guess the best way to put it is that he talks, he is in mainstream school.  While his progress may be a bit slower than other kids his age, he is managing and that is worth its weight in gold to me.   Nate has become my major project for obvious reasons.

Jack is in first grade- last year I came the closest I have ever come to fully asserting my authority as his mom, and as a result of this, and a wonderfully supportive staff, Jack is well-equipped at this point to accomplish the goals that were set for him.  Does he resist writing?  Like you wouldn’t believe.  Does he try to get out of reading?  Every single day.  “mommy, you start reading now”- and that’s after the first page.  But I know how to trick him into reading- he’s pretty straight forward- if you entice him with something that’s within his area of interest, he is actually pretty easy.  He had to “earn” wearing his Halloween costume to school- he was a world war II fighter pilot- extra math homework on the computer every night for a week.  He did it, and when he would start to complain, I would remind him of the costume and he was good to go.

His assistive technology “plan” is being put into place- he has a word processor available to him at all times, and he continues with a scribe for tests and longer assignments.  It has made a world of difference for him.  His aid this year was with him for quite a bit of the time last year, and you can tell that she is really looking out for him.  The same thing applies for his OT- and the special educator, while she is “new to us”, has been extremely communicative.  I miss his kindergarten teacher- I really felt part of the team when he was in her class because she kept me informed of any issues or challenges that Jack was facing.  It was a very comforting feeling.  This year there is quite a bit less of this, which is not a fault of his current teacher, just a different style.  It was more like this when Jack was in pre-K, and it’s fine, just takes some adjusting on my part.  It also keeps me from becoming a helicopter mom.  I made the decision to do minimal volunteering in his classroom for the same reason- it stresses me out sooooo much, and I know that having me there really interferes with his learning.  Not to mention, this mama is just a bit busy these days.  Jack is struggling a bit with math- which is also a challenge for me because I LOVE math and have a hard time remaining patient when he doesn’t “get” something. 

Most of the issues and major developments with Jack revolve around his social world.  His view of others is changing, his desire to be around other kids is greater.  This is awesome- but it comes in fits and starts and he really struggles with being appropriate in social contexts.  He has the tendency to take things too far, make other kids uncomfortable or annoyed.  He has had a few ahem, “conflicts” with a little girl at school, although I honestly think it’s more “flirting” than anything else.  I had to have several “talking to’s” with him, and even banned him from watching airplane videos one evening- that definitely had the desired effect.  I haven’t heard of any further issues in the last week or so, keeping my fingers crossed.  Jack talks about “friends” from school more these days, asks for play dates, etc.  He has also gotten somewhat attached to the school nurse, and seems to visit her for the smallest reasons- luckily she loves him.  Kind of cracks me up that when she calls she ends up gushing and asking me how I can ever “discipline” him.  I told her that after 6 years, the cuteness factor kind of erodes, ha.

The downside?  Jack is kind of fed up with Nathan.  He wants his brother to play with him, interact with him, or frankly at this point, just react to him.  And he really doesn’t- unless Jack really ticks him off.  So Jack constantly tries to annoy him just so that Nate will acknowledge him.  It’s not hard to know when he’s succeeded as Nathan, while “nonverbal”, has no problem with shrieking at the top of his lungs.  Jack has even asked for a “new brother who talks” on multiple occasions.  He insists on calling Nathan a baby and says he wants a bigger brother.  If John and I knew we could give him a neurotypical brother or sister we might just do it at this point.  Having a sibling who won’t engage at all is almost worse than being an only child in some ways- because they are right there, but not.  I feel like this is part of the reason Jack has trouble with peers sometimes- he doesn’t have a “baseline” of what’s appropriate, other than his buddies.  He tries to treat them the same way he does Nate, because he knows it will get a reaction, but of course this doesn’t go over too well. 

We need to do more play dates- my anxiety over his sometime inappropriate behavior should not stand in the way of this, but I am ashamed to say that this is sometimes the case.  I need to get over it, it’s just much harder than it sounds.  Which is why I’m ecstatic that a mom at Jack’s adaptive swim lessons who has I believe one son on the spectrum and one son with Down’s,  gave me her card tonight and told me to call her.  Jack made a little friend!  Good stuff.  Because the idea of having another child is more terrifying than I can even put into words- I don’t know if I am capable of having a neurotypical child and I feel irresponsible taking that chance.  I know that most of the girls on both sides of our families have been neurotypical, but I also know that I have had two boys, and have 4 nephews and one niece.  The odds are not in our favor on that one.  It’s not that I don’t “want” another child on the spectrum, I just don’t know that I am physically capable of doing all of the things for another child that I am doing for these two right now.  The thought of it makes me want to just schedule lots and lots of play dates, ha.

Autism, Eating Out, and Friends

As autism parents and parents in general, we all have our own personal fears, things we avoid.  My biggie since diagnosis (and John’s too unfortunately) is taking the kids out.  They are so stinking unpredictable- Jack’s meltdowns have become less frequent but when they happen, look out!  And Nate is fine….until he’s not, and once again, look out!  When the boys were first diagnosed we had a string of rotten experiences taking the boys places- now granted at the time we had not stopped to weed through what was appropriate to expect the boys to handle given the circumstances.  We were trying to “soldier on” and go to places like Christmas Eve church services, long dinners in a large group, places where there was no “escape” route should the inevitable happen.

This chain of events has made us pretty gun shy.  And my husband has an even harder time with it than I do.  I am guessing this is because I take them more places by necessity- the doctor, shopping, play dates, etc.  My husband definitely drags his feet when it comes to taking the kiddos out, and I get it.  At the same time, there is no way to teach them how to adapt to their surroundings, to cope with sensory overload, except to expose them to these very things.  Gradually. 

Thus far I have been doing this by taking the boys out in one on one situations by myself.  And it has gone pretty well.  But we need to be able to go places together, we need to get over this fear, the past issues that we had.  Some ways to make going out less nerve wracking- aim for individual events only- such as a movie, and just a movie, or a meal, in a “friendly” arena, and just that.  It also helps to have safety in numbers.  We have been lucky in that we have met several great “autism families” in the past year or so. Going out with another autism family is very helpful for us; does someone usually have a meltdown??  Yup.  But we are among “friends”.  Sometimes it isn’t one of my kids but one of theirs and vice versa.  Either way, there is a built in support system for either family.  Everyone is trying to accomplish the same goals- to minimize sensory issues, to be in a venue where screaming is not necessarily noticeable, and to get food on the table asap!   

Some may say this is catering to one’s kids, spoiling them, and go back to that whole autism is a result of spoiling your child thing.  WRONG!!!  Remember this people, we all started out on a level playing field in this parenting game.  I was in a wedding when Jack was 4 weeks old and took him with me!  I took him to big family events and social events when he was quite little, I didn’t coddle him.  The changes in our routine came as a result of his sensory issues, his reactions to these experiences.  Bottom line…he is not a brat.  And we are not “enabling” him, unless by “enabling” you mean empowering him to find new coping methods.  This is a common misconception among parents of neurotypical kids- that we are using our kids as an excuse to miss social events, (oh okay I have been guilty of this once or twice)  or that we don’t push them hard enough.  To people who are thinking this when reading this entry- let’s try this- you take ONE, just one of my kids for a weekend.  You will never, ever say this to me again.  When you take Jack to a playground for “fun” and the minute he jumps out of the car he is about 5 seconds from a meltdown because of the crowds, the noise, and the, gasp, bugs, you will get it.  Trust me!

So the point is, we took the boys out to dinner with another family last night.  And it was a smashing success- the restaurant was a combination of low key and noisy (like the kind of noisy where you can scream at the top of your lungs and no one notices), and yes that is possible.  There were foods that fit the kids’ dietary restrictions that they actually liked.  None of the kids had a meltdown, and neither did the parents, thanks to some margaritas.  The family that we were with takes their kids, one neurotypical and one on the spectrum, out frequently on errands etc.  I am in awe of this, as we have not been so brave in the past.  It’s good for us to be around them, to realize that the kids’ meltdowns cannot rule our lives and plans forever.  It’s a bit different having two kids on the spectrum with basically opposite sensory needs, but still, we made this work, we can make other outings work too. 

 

Autism is the ultimate brain teaser for both parents and kids.  If you consider yourself intellectual, you would love certain aspects of being a parent to a child with autism.  I am constantly planning, anticipating possible reactions/possible stressors, and thinking of work arounds should the worst happen;  I plan every entry to a store (Nate still cries every time we walk into a store) and exit (which is when Jack usually gets upset).  I am constantly assessing- constantly being tested mentally by my kids.  It’s definitely a challenge, but with work and experience, I am realizing that we don’t have to miss things.  John and I will always be challenged to work together in tandem in ways that other parents might never even think of.  While this can be tough on a marriage and family, it also rewards us with a deeper level of intimacy and understanding.  We were driving home last night and Jack was freaking out- I think over a peppermint?- and saying everything he could think of to shock us- his new technique.  John and I almost had tears running down our cheeks and were working like anything not to laugh our butts off.  Others would listen to Jack and think he is this naughty child- only my husband and I know the truth- the kid is going for shock value and frankly has little to no idea what he is saying.  He is pulling it all from you tube world war II airplane videos- which by the way, not so politically correct. 

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. 

Took Longer Than I Thought

For me to burst into tears after today's assessments.  We did this study for the greater good- to benefit autism research.  There was no "personal" benefit for our family other than some financial compensation, which, while nice, was not reason enough to endure the things we have throughout the SEED study.  I have been at it for about a year now with this study.  I have done about 4 phone interviews and filled out countless surveys and sent them in.  Today was the final step- assessments for Nathan and lab work for him, me and John.  The lab work was the least painful part to be completely honest. 

There were about 2 hours of assessments for Nate and about 3 hours of "interviews" for mommy.  Daddy stayed with Nate during the assessments, so I don't know for sure how he was acting while they were trying to work with him.  It seems that he had a very stimmy day and they couldn't get much out of him.  This isn't really surprising- most kids don't perform to their potential in unfamiliar environments, and this is especially true when the child has autism.  And these people, never having met Nate, do not know his particular "catch phrases" (things that get his attention) or the best way to approach things with them.  I am beginning to realize that standardized testing in children on the spectrum is a joke.  Isn't the whole point that it's a spectrum and that these kids do not respond in typical ways?  The typical testing isn't going to show what Nate can do.  Or that's what I tell myself, and what I need to believe, especially today.

The interview was BRUTAL.  I mean, "does Nate look at you when you walk in the room?" "how about other people he knows?" "how about strangers"  "how about when he was 16 months old?".  That is just a BRIEF sampling.  For three hours.  Does he jump?  Does he hop?  How is his gait when he runs?  Does he hold a spoon "appropriately?"  Well the food almost always ends up in his mouth.  Almost every social and developmental scenario you can think of was addressed.  My brain literally hurt when it was over.  And also, I was extremely depressed.

When they reviewed the results, we got the same sympathetic look as always before the examiner started.  I even told her, "hey it's ok, we're used to this by now."  Think again.  They assessed that Nate has regressed by 4 months since his last assessment 6 months ago.  I'm sorry, but I really don't think so.  I mean, I don't THINK so.  Then I start second guessing myself.  Is he doing worse?  Because saying he regressed 4 months in the last 6 actually indicates 10 months of loss if you see where I am going with that.  Because he should have gained 6 months in 6 months right?  But if they are saying he lost 4.....

I called my mommy- what else is a girl to do? She called bull pucky.  And I think I agree.  I think that the testing environment severely affects a child with autism, as does the identity of the tester.  I think that his teachers in his school know better when to persevere and when he truly can't do something.  And I need to try and keep that in mind.  This just left a really bad taste in my mouth....

The greater good is great, but our good is important too.  I am taking a break from "extra" assessments for my kids for awhile unless there is some true benefit for them- like therapy or a medicine.  This whole, "yep, your kid still has moderate to severe autism" thing really wears on you, you know? 

An Awesome 6th Birthday

My boy.  Jack did absolutely fabulously today.  It was the best birthday I can remember for one of the boys in a long time, maybe ever.  It was the first time for several things- first time Jack basically "created" his own guest list, and the first time we had a party away from home.  Best. thing. ever.  Instead of running around like a fool cleaning the house last night, I was wrapping gifts.  Instead of decorating all morning, I had a nice snuggle with the birthday boy and watched him unwrap gifts.  Awesome. 

As always, I tried to keep Jack's party pretty small.  New strategy this year and it did not work :).  We had his party on the Eastern Shore in Maryland, about 45 minutes from home, at a horse farm.  I let him invite the kids from class that he wanted to come, figuring maybe two or three of them would make the trip, then our family friends.  One kid RSVP'd no- we had close to 20 kids there today including siblings.  I was slightly worried for Jack, but we were outside the whole time and there really was no noise factor to overwhelm him.  And he had an easy exit if he needed a break.

This farm- it's incredible.  It is called Dominic's Farm in Queenstown, MD and it has several very special aspects to it. 

http://www.dominicsfarm.com/

Dominic is the name of the owners' son.  He has autism and is grown.  He still comes home and mows the lawns every weekend.  As a result, the owner, who runs the parties, is incredibly sensitive to the needs of kids on the spectrum and adjusts things accordingly.  For instance, she had us come out a few weeks ago and spent about an hour taking us around, introducing Jack to the animals.  And he remembered every single name- has been talking about riding on Zach ever since (horse).  She keeps the "structure" very flexible.  And because it's such an open area, any type of behavioral issues from either boy are much less glaring.  Nathan ran around shaking a rope for a good 20 minutes and stimming, and I don't think anyone noticed.  Although to be honest, I really just didn't care as long as he was happy. 

This is Jack sitting beautifully listening to Miss Kathy talk about being careful around the animals.

Jack and Sean watching Angry birds while waiting to ride

Mommy's proudest moments today:
- Jack handled letting other kids ride the horse like a champ- no meltdowns at all. 
- Jack decided he did not want the birthday song and with the help of his OT made it very well known- he usually cries at the end of the song, all of the clapping really bothers him, and he recognized this and avoided it. 

Most special moment- I was walking to the fields with the boys, holding Nate's hand, and Jack was walking next to us.  One minute I looked down and Jack was holding Nate's other hand.  I cannot stress enough what a big deal this was.  This has never ever happened before, it was such a wonderful sign of affection and it still brings tears to my eyes.

I am proud of myself.  I realized as I sat down to write this today that I was more at ease with the boys and their behaviors today than I have ever been.  I did not offer one explanation for either of their actions.  Now, they were both very very good, but as I said, Nate was shaking rope and running laps for a good part of the party.  Jack's anxiety was very obvious at times and I am sure that some people wondered why he opted out of the birthday song.  I felt no need to explain.  I don't think I uttered the word autism all day, except when talking to the owner of the farm about treatment options before the party.  This is a huge first for ME. 

Hilary Clinton said it takes a village to raise a child.  That's one child, and I assume this child is not on the spectrum.  It takes a lot more than that to raise two children on the spectrum.  And damn, we have built one Hell of a village over the last several years!  I looked around today and behind the kids and parents from Jack's class saw some of the most caring supportive people I have ever known.  My mom and dad, my little sister, John's brother, some of my very best friends- Joann and Helen and their families, another special needs family we have connected with who understands our life like no one else ever could, a family from the boys' OT practice.  Preschool friends who Jack actually connected with back then- which was huge back then.  Jack's OT made the trip to see him- she has been working with him for three years now and has earned that gorgeous Jack smile-  not the regular cute smile, but the one reserved for people he really loves.  We missed Jack's mimi, one of his most favorite people, very very much.  She has been an invaluable support to our family during our "rebuilding" process, and Jack just LOVES her.  But we will see her tomorrow.  All of these people are here for the boys, here for our family, and their presence made Jack, and frankly me and John feel secure enough to really let our guard down and have a great time.  I know that Jack will never forget this experience- and all John and I could do for most of the party was grin at each other like idiots, because we knew we kicked some serious butt on the party front today and our little boy was thrilled.

A Social Victory

I took the day off today to spend with the boys.  We had a bit of a daycare snafoo because of spring break, and frankly I haven't had a non-sick day with the boys in a long time so we were due.  I really wanted to do something social for Jack- he's been having a bit of a rough year in that regard.  Very few party invites, which is a very common thing for kids on the spectrum.  In fact, our local TACA chapter is making their May meeting a literal birthday party for the kids to attend since they get to go to so few of them.  Jack has had a few boys in class who are not very nice to him, and bless his sweet heart, he doesn't understand just how mean the things they say are.  He comes home and tells me how they say things like he is the most annoying kid ever, or for him to get away and never come .back, and Jack just kind of laughs about it and then says the child is his friend.  In some ways, it's a good protective mechanism, but I hate the thought of my kid being unable to defend himself

So you can imagine that I have become very protective of him when it comes to friends.  We usually stick with kids that we have known for a long time, or the children of close friends of mine.  I called most of them up to see if they wanted to "play" today but everyone was pretty busy at the last minute like this.  So I took a deep breath and grabbed Jack's class list.  I was honestly terrified.  For those of you who do not have school aged children yet, it feels much like asking someone on a date, or making a new friend as an adult and "taking that step" to socialize outside of the usual group. And the last thing on earth I want is for Jack to feel rejected.  There is a boy in his class who has always been very nice to him when I have been volunteering in the classroom, and his mom seemed nice when I met her as well.  So I did it, I called.  And asked if they wanted to go to the local bounce place with us this morning.  I figured it was a low pressure setting, with lots of white noise.  And they came!

Jack had a GREAT morning and he and the little boy played very nicely together.  When Jack wanders off, this little boy looks for him.  He is very protective of Jack, and of other kids in general.  At one point, an older boy hit Jack when they were standing behind a structure and I didn't have a direct view.  Jack's buddy came running over to tell me, which just really touched me.  I couldn't really get Nate into actually playing on stuff, but he had fun running around anyway.  It's always difficult to decide how to broach the subject of Nate with new friends.  I have a "new" technique that's really effective.  It's what I like to call "out with it".  I just told the mom, and told her what to expect.  She was very supportive, and then she didn't have to wonder why he wasn't touching any of the bounce houses, or talking, or why he prefers to lie on the floor much of the time.  I guess I could keep it to myself, but I have a feeling that not knowing would likely make the other person more uncomfortable than knowing.  Because it's pretty obvious that Nate is not doing "typical" three year old stuff, especially when this family's two year old was there climbing all over everything. 

Anyway, the boys hugged goodbye, talked about the Orioles, and want to play again!  So so glad I took the leap after months of worrying.  Score one for Jack! and mommy!

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!