This is what we call Progress, or “Hi Thomas.”

One year ago, Nathaniel was completely non-verbal. He could point, grunt, cry & scream to attempt to make his needs & wants known. He had almost no pretend play skills that were obvious to anyone. I still think that inside his head, he had all kinds of imaginary scenarios going on – I mean, some “non-functional” play may seem unimaginative & without purpose, but I gotta say that some of the things he expects his toys to be able to accomplish has got to be because of some sense of imagination. But I digress a bit.

In the past several months, Nathaniel’s language skills have grown, from being able to imitate isolated sounds to single word labeling and requests, to two-syllable words, to three, to two-word phrases, to full sentences. Each step along the way has been amazing. His pretend play is pretty darn impressive, if I do say so myself. He’s also come a long way in his ability to handle things that used to be instant meltdown-causers.

This morning was a shining example.

For Christmas, Nathaniel received a train table for wooden trains (from Santa with a little help from his older cousin and uncle). It was set up pretty simple, a wooden track with some ups and downs, loops and a sloping bridge pass. To reduce frustration, only a few trains were included at this time – Thomas & Percy from the Thomas & Friends series, plus a black engine, two simple train cars and a truck that came with his previous wooden set. He played with it a lot in the beginning, but had points of major frustration, where he’d throw the tracks & the trains and stand on the table & generally freak out if the slightest thing was off. It was pretty frustrating for us & we kind of stopped encouraging him to play with it.

This past weekend, Nathaniel’s uncle, my brother, gave him a new train for his set, which had belonged to Nat’s cousin as well. It was Toby, from Thomas & Friends. Nathaniel was ecstatic and has been playing with his set again multiple times per day. He and I now have a set arrangement – I push Thomas with two train cars and he pushes Toby.

The progress of this morning, you ask? We played for about 25 minutes with him not getting upset by anything – Thomas & the cars fell off the track multiple times. I put the two train cars in a different order behind Thomas & he didn’t even seem to notice for quite a while. He turned Toby around and had him go in a different direction (yes, this is a big deal). The bridge piece fell off multiple times. Thomas crashed into Toby. And each time, Nathaniel just smiled or laughed or cheerfully remarked on what had happened. (By the way, when Nathaniel says “bridge,” it sounds like, “bitch,” so he is frequently saying things like, “train go over the bitch” or “bitch fell down.” Tee hee.)

And my favorite part of all of this? When we first started playing, my Thomas train passed his Toby train and Nathaniel said without hesitation, “Hi Thomas!” as if he was pretending to be Toby’s voice and beginning a dialogue. This is big – dialogue between toys in pretend play scenarios is something that has been worked on in therapy repeatedly for months.

Some other highlights: Nathaniel kept pausing his train and mine here and there, and saying “red means stop” and “green means go,” as if there was a signal there (which there isn’t).  He was also clearly racing my train and giggling if I started to catch up. Also, there’s a point in the track where the trains can meet at a sort of crossroad. If our trains were about to meet, he’d make a production about getting out of the way so there’d be no crash and once again, said as our trains passed, “Hi Thomas.”  If my train wasn’t there when he got his there, he’d say, “No train today” or “Train not here now.” This is like what he says when he leaves preschool – because there’s a couple sets of train tracks on his way home and once, a train passed by. Since then, he apparently frequently remarks something along the lines of, “No train today.”

I’ve never had so much fun playing trains with the kid.

A change in plans

One thing that has been a constant pretty much since Nathaniel was born is that things rarely go the way we planned them. For better or worse, it’s just the way it is.

I mean, I could go into all the things you plan before you have a child, which is really probably unreasonable for anyone. You can’t predict the life of a child, let alone that of a family. Sure, I didn’t plan on having a child with developmental delays and Autism. But none of us know what is going to be for our children – we don’t sign up for anything but almost overwhelming love and responsibility.

Sometimes, our plans get scrapped or edited and it ends up being for the best. Sometimes we miss out on seeing people we want to see and don’t get to go places we thought we’d go, but then we end up being content with the three of us, just hanging out, doing nothing exciting. Our plan changes are often due to the unpredictability of Nathaniel’s moods and the fact that the kid gets sick with colds, sinus infections, stomach viruses & all kinds of fun contagions like there’s no tomorrow. When Nat was in the Early Intervention program, we had no real solid schedule that ever worked for weeks in a row, between him being sick, our therapists being sick & their own kids being sick. No one was to blame, it was just our gift of having fantastically messed up timing. And so far as our social lives, I could count on my hands the amount of times we’ve attended any kind of get together that we planned on going to. We’re just horribly unreliable people nowadays.

Here are some of the bigger, more memorable plans we had made just in the past year or so & their result:

Just prior to Nathaniel starting Early Intervention services, we went on a road trip to visit my oldest friend. It went way better than expected or planned. We wanted to do the same trip the following autumn, in 2012. We also thought that in the spring of 2012, we’d visit another close friend who lived even further. But then the neurology evaluations started in the winter of 2012, the ASD diagnosis was given; our days were full & our pockets a little lighter, so the longer distance spring trip was ruled out. We held out hope for a long weekend in the fall.

[One of my own biggest plans gone wrong happened in March of 2012, we adopted a dog from a shelter – the adoption went through two days after Nathaniel’s ASD diagnosis. Unfortunately, Nathaniel was not comfortable with the dog’s exuberance and he did NOT like how the dog had taken over Mommy’s lap and so much of Mommy’s attention and had majorly changed his routine. I’d have to say that our cat wasn’t really thrilled with the dog either. The dog was a total love bug – but needed way more constant attention than any dog or cat I’d ever had. After about three months of my struggling to balance everybody’s needs and crying again & again when I couldn’t make it work, I agreed with Eric that things were not getting any better, they actually seemed to be getting worse, and it was time to find another home for the dog. Thank goodness, we found a much better home for the dog, where he is reportedly getting all the love, attention and exercise that he could want – at least plan B worked out.]

In September of 2012, well after the dog disaster, as we were starting to get comfortable with being a special needs family, we found that a lot of plans were going to change again. We learned that Eric was going to be laid off from the company where we both worked, along with some of our other coworkers, as business was not good & was not expected to get anything but get worse, at least until the spring of 2013. No road trip for sure. I also had to change my schedule, which I hadn’t planned on doing until Nathaniel started preschool in February 2013. Up until that point, from the time I had returned to work after my maternity leave, I had been working half days at the office, being home with Nathaniel in the morning, able to be there for all of his therapy sessions & his gym class. I made up the hours in the evening. Now, I would have to take over Eric’s position at work & no longer be home for most of his therapy. Eric was going to be a stay-at-home dad, at least until another job was found – and we had never planned for that, nor are we able to keep that arrangement indefinitely. I remember sitting in the waiting area of Nathaniel’s ABA office when the word came that Eric’s days at our company had an official end date – I just sat & cried & couldn’t stop. People probably thought I was crying over some bad news I got from the associated neurology office.

In January, while Eric began really looking in earnest for a new job, as preschool was approaching and the morning therapy sessions would be ending, my health insurance, which was now covering all three of us, changed, and this caused us to change the plan we had with our son’s ABA therapy/neurology office. This office was not covered by the new insurance, except by a partial reimbursement. We remained there for about 5 weeks until the start of preschool, but it just was not affordable anymore or logistically logical.  Thank goodness it hasn’t hurt any – again, sometimes nixed plans are okay.

And then came preschool. Now – prior to diagnosis, we had assumed that Nathaniel would go to the same private daycare/school where he had been going part-time through kindergarten. But private school would not allow for us to receive therapy unless we went all private for that too. So we’d have to leave that behind. It was a sad goodbye, but definitely for the best.

When we first started meeting with the public school child study team, before all their evaluations were done, when we were just wild & crazy newbies (maybe just crazy), we thought, we want Nathaniel in a general ed program, with pull-outs for therapy. And then he got evaluated & at our IEP meeting, the team said that he should be in a full-day self-contained Autism class. We were kind of on the fence, but over the next week, we started to accept the idea. Then we toured his future school & checked out all the preschool classes, with Nathaniel in tow. Our experience in his recommended class was not a positive one & Nathaniel was clearly agitated and had to leave the room. We visited the mixed disabilities self-contained class & it was a much more positive experience. General ed was clearly too huge – the student/teacher ratio was just overwhelmingly not right. This kind of feels like Goldilocks, eh? So then we met with the team for another IEP meeting & everyone agreed to have him spend the first half of the day in the mixed class, and the second half day in the Autism class, as the evaluations seemed to back that as a necessity. (Oh yeah & Nathaniel got a stomach virus for his first planned week at school – again, fantastic planning & timing there!) For the first month of Nathaniel being in school, the IEP was followed and we had no idea that it was not going quite as hoped; Nathaniel had been a little more difficult at home & he was getting a lot worse with handling transitions, but our contact with his teachers led us to believe that he was gradually adjusting to school. After the first month, we had a prearranged meeting with the team and his teachers & we learned that the plan was not going well for Nathaniel; he was very agitated even approaching the time of his Autism class and it was not benefiting him. However, he was doing fantastic in the other class. This fantastic class is only a half day. So our full-day preschool plans came to a necessary, but abrupt end. And Nathaniel is definitely the happier for it – so again, not as planned, but it worked out even better – at least in the matter of his real happiness.

Our next contingency plan was to enroll Nathaniel in a private preschool/daycare for the second half of the day. Eric had interviewed for a great sounding job and had been told a few weeks earlier by the hiring agency, good news, you’re on the list for the training class starting in April & an official offer letter will soon be in the mail. Therefore, we would need a daycare option for Nathaniel very soon, especially since he wasn’t going to be in school past 11:45am anymore (not to mention the social & developmental bonuses of an afternoon program) and it wouldn’t be fair to ask the grandparents to babysit the majority of the week. So we toured a place, really liked it and began discussing when Nat should start. But the offer letter for the new job hadn’t come. Eric was told that there’d been some delay, but it would be coming. But it didn’t come. And Eric was told that they hadn’t, in fact, finalized the list, but offer letters were expected to be sent out & should be received by Monday, which was the day we toured the daycare. Today’s Wednesday – no letter. It seems it was not to be.

Now we need another plan and a plan B, most likely. With the way things are going, maybe we should start having a plan for each letter of the alphabet.

Weekends and how we roll

Weekends are tricky in our house. I still look forward to them, as a chance to escape from the drudgery of my 5-day office week and as a chance to spend more time with my family, since I’ve not been home for as long on weekdays these past few months, but there is also a feeling of nervousness. It may seem strange, but all that togetherness and less structure for most of the day can be, well, a little challenging.

Since about November, we have added some structure to our Saturdays, by Nat having private speech therapy, followed, much more recently, by occupational therapy, both at the same place. This means that counting the drive there & back, we have 2.5 hours of not having to plan or prepare for anything. And Nat is generally a joy to be around during therapy. When I’m in the sessions with him, like I am for his speech therapy, it’s some of the best times I have. Back when I was home mornings and he was getting Early Intervention services at home, plus his private therapies, those times were the absolute best for me. He shines and always amazes me when he’s with his therapists & teachers. He can fuss and fight at times, but for the most part, he really enjoys it and I’m happiest when he’s happiest.

It’s the hours around that for the rest of the weekend that can be dicey. Nat wakes up most days by about 6:30 a.m. and goes to be at about 8 p.m. He isn’t one of those kids who you can put in his bed/crib at a certain time, dim the lights & have him lay quietly and take a nap – and he hasn’t been for most of his life. He fights naps to the bitter end when he’s home – the bitter, throwing everything in sight & screaming until he crawls on my lap & crashes asleep end. Or he doesn’t nap at all, just occasionally flops around like he might, repeatedly dashing our hopes when he rises & resumes being very awake. So unless he spends an afternoon with a relative or the weather is nice outside (which is only for about half the year, between chilly rainy periods, windy winter days & the mosquitoes that have a huge effect on our ability to play outside at home in late summer), we have hours, usually filled with more Play-Doh than I’d ever care to play with, train-related toys, Legos & an assortment of TV cartoons & kid’s DVD’s. When Nat is with Mommy & Daddy at home for too long, he perseverates, tries to make toys do what they are incapable of doing, gets frustrated, throws said toys, screams & spends an inordinate amount of time whining for/demanding milk, juice, certain foods & sensory play activities that almost always result in over-stimulated meltdown. He’s usually way, way more balanced when he has some place else to go for some of the day, preferably not with Mommy or Daddy. I think it’s because on weekdays, he’s always had some other place to be by the afternoon, either a grandparents’ home or his part-time daycare. By 1 p.m. most weekends, I think his reaction is basically, “Why am I still here with you guys?”

We have some routine stuff we do, like hitting the nearby mall at least once every weekend, where Nat checks out the fountains, gets a favorite snack and checks out the Disney Store and the kid’s shoe department at Nordstrom’s. Why Nordstrom’s? By following small children carrying balloons many moons ago, Nat learned that they give out balloons to any kid who wants one (and Nat wants one), plus they have a really big fish tank. A fish tank that lately has become our nemesis, because Nat would like to spend his entire life in front of it & there is no inducement good enough to leave without a fight. But we keep trying!

Anyway. We’ve also been lucky that since about February, we’ve had a babysitter at least one afternoon almost every weekend, as Nathaniel’s been in full-time preschool & his grandparents don’t get to see him afternoons as much, so they want to see him when they can. However, again, particularly on Sundays, when we have no therapy (but are starting an ASD kid’s gym class soon!!!), it’s where our minute to minute existence really plays out.

Every minute with Nathaniel has a sense of suspense to it. Nothing can be taken for granted – except that he’s usually quiet & calm if he’s scored a sippy cup of milk from us (some kids you have to encourage to drink milk – not my kid, milk is his crack addiction). You never know what mood he’ll be in when he wakes up, or how things will play out as activities end or begin. He can wake up in a touchy funk, flipping out & unable to explain to us what he wants, but screaming the same unintelligible thing again & again. Or he can wake up completely happy and sweet. But that doesn’t mean that it won’t suddenly change to the opposite without warning because of some small detail. Even activities that seem like a for-sure thing, are really not for-sure. He can ask to do something or to have something & be really excited that he’s going to get it. And then totally flip out (and not in a happy way) when you give it to him. He seems to always have an idea in his head of what he expects to see or experience – but either cannot express it well enough to us, due to his speech delay, or that thing does not exist, or is simply not possible at this moment. Things like the fact that we are not going to play outside at 5:30am when it’s 20 degrees out & we’re in our pajamas. No, we do not have a birthday cake in the house right now. You can scream all you want – it won’t appear. No, your favorite Dinosaur Train episode is not yet available on DVD (despite it being listed on a website as appearing on a DVD that I just bought) & I can’t conjure it up on the TV b/c you scream for it. Just because you want there to be a Mickey Mouse Clubhouse episode to match your birthday banner’s theme, does not mean I can make it happen for you now, this second.

But these are the negative things – the things that tend to eat up too much of our minds. In between these challenges are fantastic moments, when he wows us by how much he can do, or how much he knows or when he does stuff that is so dang cute & we just melt. And then there’s those more-frequent-than-not early mornings, after he wakes up, when he cuddles on my lap for a good long time, not needing anything else. No TV, no books, no nothing. Just wants to curl up on my lap, quiet, wiggling around a bit to find that perfect nook to cuddle in until something else gets his attention. These are the moments that keep us going, especially on weekends.

One year

Please forgive this long post – I will attempt to be way less long-winded in the future.

But today is a big day, in a way. It’s an anniversary of sorts.

One year ago today, I was told that my son Nathaniel has Autism – PDD-NOS to be exact.

About 6 months before that, in August of 2011, we were referred to Early Intervention Services by our pediatrician, mainly for Nathaniel’s speech delay. He was 18 months old & had no words. None. I used to get so aggravated when people would ask on evals & questionnaires, “Besides mama & dada, what words does your child say?” My son doesn’t say mama or dada and thank you so much for rubbing it in again!

In early September 2011, Nathaniel was evaluated for intervention services. Again, even though he didn’t wave hello or goodbye, had started walking on his own at 17.5 months, (after over 5 months of cruising along furniture) and had generally been on the late side of “normal” on all his milestones, I honestly really thought the big issue was speech & that was it. That evaluation was so painful. He was tired, cranky and did not want to work with the women who had come. And when he came away from the other side of the room to attempt the tasks they put in front of him, he could do almost none of them. Even ones I had seen him do. I kept chanting in my mind, “Please show them you can do this. I know you can do this.” As much as I wanted services, I didn’t want him to be seen as less capable or less intelligent. As soon as they were done with their test, he fell asleep on my lap. And they went over the scores, telling me that in every area except one that had to do with something social, he was very delayed, scoring at 10 months old and younger for some areas. And I cried. I cried off and on for the rest of that day and night.

Yet despite this, all we were granted from EI was one weekly session of Occupational Therapy and one weekly session of Developmental Intervention. I wanted Speech therapy so badly for him, but they said that this combo works with most kids and he wasn’t ready for that kind of therapy. And I wanted to believe it. Me & my family continued with our delusion that after a few months of these two weekly sessions, Nathaniel would be talking & totally catch up.

A few months after that, right around Christmas 2011, Nathaniel got a whammy combo of an ear infection, sinus infection, bronchialitis & possible pneumonia. He spent days having long periods of screaming & crying & generally melting down, plus having night terrors that scared the bejesus out of us. This went on from about December 20th or so, all the way through New Years. Every night of that awful time, Eric & I searched online, trying to find out if these episodes were tantrums or something else. This could not be normal. He’d had night terrors and meltdowns prior to this, but this period of time was just so extreme. Finally, January 2nd, we were desperate and I called our pediatrician. He agreed – this was not normal. He referred us to a neurologist.

It took a month for us to get our first appointment – but in comparison to getting a developmental pediatrician, that was fast and in the meantime, we continued with our developmental teacher/therapist and were granted one speech therapy session. We dropped OT because we were dumb and in all honesty, hadn’t gelled with the two OT’s that we had met up until that point.

Anyway, in early February 2012, we had a consultation with the neurologist, who lined up a bunch of evaluations, including an EEG (he’d had one a few months earlier when we had some concerns & it had been normal – this second one was too), blood work (also normal), a behavioral assessment (which I was fairly clueless during, looking in retrospect) and another appointment – which I thought was to see an audiologist to test his hearing, as they had recommended that. I was wrong about that “AU” in the appointment list. Stress had sort of messed with my brain & probably Eric’s brain more than we realized.

Important note: Prior to my son’s diagnosis, I knew nothing about Autism, other than believing that it made people not social. My son was social – when in a good mood, around people he knew, he was a smiling, giggling, cuddly kid – he couldn’t be Autistic. He seemed to like other children, at least the ones in our circle. So when my searches would lead to pages about Autism – I’d x’out.

So on March 7, 2012, I brought Nathaniel with me to the neurology center, expecting a hearing test. A doctor & therapist led us to a little room with toys & so forth. Upon entering the room, Nathaniel started flapping and I was asked, “Does he do that a lot?” and I said, “Only when he’s happy.” Again, I knew NOTHING about Autism & did not know that flapping was related in any way. So then the test began. The doctor worked with Nathaniel while I sat with the therapist and answered a variety of questions about his behavior, sleep, eating habits, etc. After a short time, I asked the therapist, “How is this going to test his hearing?” (Again, I thought the AU on the list of appointments was for “Audiology.”)  The therapist was, understandably, really confused. She said, “This is a test for Autism.” My stomach dropped, my heart skipped a beat & I got a little woozy. Then I said to myself, this is just a formality, no reason to get stressed. The doctor and therapist left the room to score the test and Nathaniel kept on playing while I texted Eric & said this was not the test we thought it was.

The two women came back in and fairly bluntly, but nicely, told me that Nathaniel had PDD-NOS and “mild Autism.” They then explained to me some recommendations for therapy, about a follow up appointment that we’d have there to get more information and gave me some reading materials, etc., etc. I was in a daze. I asked them, “So what does this mean for his future? What is his prognosis? Did you just say that he has Autism?” Again, I had been totally in the dark. And the doctor said, basically, that there’s no way of knowing. Early Intervention has been shown to help. He could totally catch up with his peers by kindergarten. Or he may regress. “He may never talk.” I was blown away.

I called Eric and tried to tell him as much as I could while driving home from the neuro office. I then called my parents’ house to tell them; my mom was out, so I spilled everything to my dad, who took notes for my mom. I did this all while Nathaniel listened to music and watched a cartoon.  I then headed to my parents’ to drop Nathaniel off for the afternoon, while I would be at work. I sat on the couch in my parents’ living room and went over it again for my mom, holding back tears. I kept thinking and saying that our whole outlook had changed. A few months earlier, we thought he’d be totally caught up by now. Now we had no idea. We just knew that we had a lot of work to do, a lot of therapies to set up, a lot of phone calls to make. And then I drove to work. The rest of that day and night are a blur now. I remember crying a lot.

I don’t want to leave this on a downer.

In the year since that day, the Early Intervention program granted us additional therapy (our therapists rocked), we added private therapies (also rocked) and with the help of these amazing therapists and wonderful family support, plus a network of special needs parents giving advice, consolation, commiseration and laughs through Facebook community pages and blogs, things have gotten a whole lot better.

Nathaniel is talking. A lot. He can be hard to understand, but he tries and we keep working at it. He waves hello and goodbye, dances and sings (but he’s not trying out for a talent show anytime soon). His motor skills have come so, so far – he can kick a ball, he can jump, he can walk down a balance beam just holding someone’s hand, he can put together puzzles & stackers and sort shapes like nobody’s business. It would take pages to list all the things he can do now that he couldn’t do before. And although he still has meltdowns, plus typical 3-year-old tantrums and sour moods, he is much happier now than he was before. It always pained me that although he’s had some great times & crazy giggles, he didn’t seem as happy as other kids, from the time he was a baby, so his happiness is paramount to me.

We have bad days, for sure. But we have some great days – amazing minutes and surprising hours.