We have a diagnosis - ASD.

As our readers know, we had Jonas’s autism evaluation yesterday and the doctor didn’t even need to score the evaluation to tell us that Jonas has an autism spectrum disorder (ASD).

That spectrum includes a wide and diverse range of things so the more exact diagnosis won’t be clear until we get the full write-up back in three weeks. Given the discussion at the end of our appointment, it appears that we’re looking at something significant. Either way, the wait is pretty much over.

I want to believe it’s inaccurate, but the rational part of me knows it’s correct. I know I’ve been in denial for a while. I didn’t want to believe it, and I still don’t. Jonas didn’t much care for the evaluation, but I thought it was still a fair snapshot of where he is right now. I have enough confidence in the doctor to believe his assessment is medically valid.

We’re not really in the right mental place to talk about this yet. At one level, nothing is any different than Tuesday. He’s still the same, wonderful, beautiful, life-filled, wondrous boy he’s always been.

The reality is that the road ahead looks a lot more uncertain. Yesterday was a very bad day. I went to Barnes and Noble this morning to do what I do to cope with things like this - I bought books about autism. I sat at the reading tables and looked through them. It was all I could do to not start crying again. And I do mean again.

That said, I know we will be fine. We just need to process this for a little while.

To all those who have supported us and continue to do so, we love you.

That’s all for now. More to come.

J-Man’s autism evaluation is tomorrow morning. My brain still hurts from the preliminary conversation we had today with the county about his transition from Early Intervention to preschool in six months. I don’t even know where to start with the fire hose of information that entails.

In any case, time to switch gears to our big day tomorrow. What we’re hoping for tomorrow is an evaluation that accurately describes where he is in his life right now so he can get whatever he needs to be the best Little Man he can be. We have confidence in the evaluator; our hope is just that he feels comfortable enough to be himself during the evaluation. He really struggled with the Early Intervention evaluations, but those were some time back and with evaluators we had less confidence in. Hopefully this one will be easier for him.

He gets frustrated with himself pretty easily now, though, and watching your child struggle through that is one of the hardest emotions a parent can bear. If you’re going through this, you already know what I mean. And you also know how much you or I would do if we could just carry some our children’s struggles for them, even for a little while.

I’ve said this to our various evaluators and teams before, and I think it’s worth repeating here. When we get the results of an evaluation, we don’t want to think we know; we want to know we know. I know that’s a lot to ask at this point, but it’s the standard I’ve set for us to work toward.

I know the reality is that there’s a lot of educated guessing at this stage. It’s the professionals who admit that and make their best call from that who I respect. It’s the ones that swoop in for an hour and pronounce judgments who I don’t. We have plenty of reason to believe that tomorrow we’ll be getting the best possible evaluation we can get at this time.

In three weeks, we’ll get the results of tomorrow’s session. That’ll be a long wait. It’ll still be a relief to get to noon tomorrow and have this behind us. We’ll cross that next bridge when we get there.

It’s been 3+ weeks on the fish oil now. It’s probably still too soon to determine what, if anything, it’s doing. And this week hasn’t been ideal at all for making any judgments. He’s felt like varying degrees of dirt for most of the week, and everything usually takes a step backward during weeks like this.

Here are a couple of things I’ve noticed improving lately, though whether it’s attributable to fish oil or what he would normally be doing is hard to tell.

* Eye contact continues to improve
* He did really well with his new OT, so score one for comfort with strangers
* He’s following some instructions a bit better
* He’s asking for things with ‘more’ on his own without as much prompting
* He goes to his high chair when he’s hungry (or drags the chair around with him) - i.e. the high chair is a good place
* His tantrums, at least in my opinion, have actually been better the last several days, though I didn’t think they were that bad to begin with

Odd mannerisms of the week:

* He REALLY likes Jeopardy
* It’s not unusual for him to refuse to get OUT of his high chair - a problem we’ve never had

We’re just going to write off the downers for the week as due to him feeling ill (a lot more sensory defensiveness, decreased speech) and move on. We’ve cut back on the ‘homework’ this week to let him recuperate. This round of yuck has been short-lived for his usual coughs and colds (which are fairly rare anyway), so that’s a good sign.

Let’s hope next week gets us back on track.

For previous installments:

Day 14
Day 7
Day 1

His word just before bed tonight - “love”.

He’s been trying so hard to say it. He decided that kissing us was going to be his ’sign’ for it in the meantime, but you could watch his mouth try to make the word. I don’t care how it comes out (”luh” with a slight ‘v’ sound on the end, in this case); he said it.

If you’re going through speech issues with your child, you know what one word can do to you. Some words - especially one word - go beyond what any of our own words can express.

Sleep well. I will.

Because I am a nerd and go in and read Tim’s posts, I went and read Amalah’s blog too, and found this piece that resonated with me.

This was the part that REALLY says what I am thinking.

You know why I’m afraid of autism? Of delays and labels and illness and stuff that just ain’t right with my kid?

Because I am afraid of myself. Of what I am capable of, of what I can handle, and that it won’t be enough. There.

Well, that, and the whole “I wish everything wasn’t so hard for him” thing.

He tries so hard to communicate without words. Now, when we say, “I love you” before bedtime and try to get J-man to say any part of it back, he kisses us instead. And kisses us. And kisses us.

I love you too, Little Man.

What a difference a week makes! J-Man has gotten into his medicine groove with the fish oil! This has been the ritual with everything else he’s taken in the past - several days of karate and fighting it and then a grim acceptance. He never likes it, but makes his peace with it. Of course, none of his other medicine smelled like a fish camp.

So it looks like that part of the equation is good for the duration. I can’t say as we’ve seen any major improvements, though it does seem that his eye contact and interaction are getting better. As Mary says in the above post, we may be seeing a trend toward improved communication!

Again, this is by no means a scientific report and we don’t have any foolproof method of charting his progress. We don’t have any standard by which to measure what ’success’ means here either. I guess we’ll just know it when we see it.

For me, “I love you, Daddy” will be more than enough.

What started out as a manageable-enough process of giving him fish oil in an oral syringe turned into full combat after the first couple of days. If I knew a martial art it might have been easier, but I doubt it.

The last couple of days have been a bit better - a relative concept. It has made giving him his other reflux meds harder as he distrusts everything we give him now. He holds a long grudge about these things. I personally don’t blame him. It’s not the most pleasant stuff in the world to take.

So far, no noticeable improvements in speech or otherwise as far as I can tell, though he has seemed more chatty in the last few days. I didn’t do an in-depth statistical analysis or anything, but I think he’s been using syllables a bit more often rather than his normal R2-D2-like moans and grunts. I haven’t seen any physical side effects so far, so that’s a big positive.

It’s supposed to take a while to notice much in the way of improvements with Omega-3s. It’s hard to be patient when you pray everyday that something will work. But it’s a lot less messy than offering animal sacrifices, so we’ll hang with it.

We’ve read and been told by a handful of people that giving kids with severe speech delays (and other developmental issues) fish oil supplements can make a world of difference. Sometimes we wonder about the wonder-drug-like claims made about Omega-3 fatty acids, but at this point we’d face a strong north gale and pee into it if we thought it would do any good.

So after doing our typical obsessive amount of online research, I went to Whole Foods and picked up some fish oil in liquid form. There is no way in hell and Georgia that J-Man is going to take pills or eat those chewy things that some egghead thought kids would actually ingest. Unless they can bake it into a tortilla chip, eating it is out.

I lucked out and found a liquid that required only 2.5ml (half a teaspoon) to get to what is generally considered a therapeutic range for toddlers. That’s less than the Reglan (reflux med) he takes, so we were hopeful we could get it in. About 5ml is his breaking point we’ve discovered.

Supposedly, the therapeutic dose for toddlers is about 500mg of combined DHA and EPA per day, though there are no definitive studies about this. God knows I’m not a doctor, so talk to your pediatrician first, preferably one that has a clue about supplements. I did learn to be careful about one thing, though. Some Omega-3 supplements contain Vitamins A and D, so be careful since above-recommended levels of those can be toxic.

The first couple of days we tried masking it in his applesauce but that was a total bust. He is super-sensitive to taste, and probably smell too. The shove-it-in-before-he-has-time-to-fight-it method looked to be our only shot.

Yesterday, I got the fish oil into an oral syringe (thank you Target for our endless supply of them) and got it in him, though not without some ju-jitsu from both of us. It’s strawberry-flavored and it doesn’t smell or taste that bad to me. Mary thinks it smells like an abandoned fish market. It does have an aftertaste, but ‘after’ is the operative word there. After it’s in him, I don’t much care. I gave him some iced tea to wash it down and he seemed OK with it (which is all relative).

It’ll take a while to see any difference, assuming we do. If it doesn’t, I guess we’re on to burnt offerings and word-saying. Let’s hope it doesn’t get to that. It’s probably against our HOA covenant.

One of the things I’ve noticed about being a mom of a special needs kid is that people think you did something to cause your kid to be that way – or that you DIDN’T do something, and that caused your kid to be that way. Either way, it’s the mom’s fault. I do my best not to listen to those types of people, because most research shows that special needs aren’t caused by something the parent has done… but occasionally, it still gets to me.

So I ask myself: is it because I work outside the home? Does he not speak because we had to have his tongue clipped at two-weeks old? Is it because I’m not a very talkative person at home myself? Did I do something wrong during pregnancy? Could I have prevented this from happening if I were a better mom?

And so it goes. There is always that negative little voice in the back of my mind saying those things. Tim says he gets the same little voice, but I truly don’t think he gets the societal pressure I feel when we’re out and about.

If you met my son, you would soon want to hug him and squeeze him and call him George. If he liked you, he might even let you do all that, although the George thing might confuse him. He is the most loving child I’ve ever seen (and we have extra-cute nieces and nephews, so we have seen them in action as well). He tries very hard to get us to understand what he can’t say, and is quite inventive in figuring out how to communicate without words or signs. He’s beautiful and funny and caring and impish and mischievous and brilliant and loving.

I just wish everything wasn’t so hard for him.

We’re working on a ‘manifesto’ so visitors and participants on the site will know the kind of community we’re trying to build here. Consider this a first draft. We’ll add more I’m sure!

Here are some rules:

• Thou shalt be respectful to every parent here.
• Thou shalt be thyself at all times. We aren’t super-parents; we’re human. Being honest will help you; holding it in won’t.
• Thou shalt laugh at thyself. It’ll make you feel better.
• Thou shalt ask questions. There are stupid questions in this world, but it’s been our experience that parents of kids with these sorts of needs don’t ask them.
• If thou doth wisheth to offer advice, doeth it constructively or shuteth thy hole.
• Thou shalt value thy children regardless of what they are going through. Thou may be having a day where thou’d rather send them off with the gypsies, and that’s fine. Thou can do that (feel like sending them off, not actually doing it, though) and still love them.
• Thou shalt celebrate thy children’s hard-earned achievements, no matter how small. However, if it involves doing the Riverdance, thou might want to closeth thy blinds.
• Thou shalt not be a horse’s ass.
• Thou shalt always be an advocate for thy children.
• Thou shalt never give up.
• Thou shalt go to Italy, regardless of what that poem says. Thou wilt have to change planes in Holland anyway, trust me.

Here’s what we believe:

• There’s nothing ‘wrong’ with our child or yours. He or she may be struggling to overcome some or many things, but our children are perfect just as they are.
• We will do what is necessary to help our child reach his or her full potential, whatever that is.
• We know more about our child than anyone else. We will not blindly accept the judgments of others, no matter how ‘expert’ they may be.
• We will, however, listen to any and all advice given to us. We reserve the right to use it, adapt it to our needs, or ignore it and make fun of it.
• We are perfectly fine with people asking us questions about our son and all the therapies we go to. There is a lot of information to share and learning from each other is how we become better parents. In the rare cases where the questioner is trying to reinforce their belief that all parents with special needs kids are weird or must be doing something wrong, I will instruct my son to go take a whiz on your front door.
• We will work to be OK with not being perfect. We will work to be OK with not being OK with not being perfect. And so on.
• People who ignore our experience and understanding of our child, treat us like idiots, and think they know more than we do about him just because they have a long string of initials after their name can go to hell.
• You have our permission to say “bite me” or be sarcastic to anyone who makes an idiotic comment to you in public. Example: “No, I never thought about talking to my child more. We decided before we had children that we were all going to become mimes.”
• Never use a big word when profanity will do.
• Anyone who judges our children, says anything derogatory about them, or makes fun of them will get their ass kicked and their name taken. Once time travel is invented, we will go back in time and smack their parents, too.
• Parents who can affirm each other with all their flaws and foibles and be supportive and understanding in the midst of all the emotions that come with this are the best people we know. We love you!

To borrow the famous philosophers’ words, “Be excellent to each other. And, party on, dudes!”

To put it simply, this is primarily a blog for parents - particularly of ’special needs’ kids - who feel either stupid, occasionally or perpetually inept at parenting, or, most likely, both. This doesn’t mean you really are stupid or inept, but if you’ve ever been so mental that you’ve made it to the mailbox in your underwear before realizing it, you definitely will start to question everything. If you didn’t realize your ‘garment deficiency’ until your neighbor asked you about it the next day, you’ll really feel at home here.

We’re the proud parents of our 2 1/2-year-old son, who is the bright star at the center of our universe. He has an exuberance that can brighten any room. He also has a great many struggles, but he faces them bravely and with a determination that inspires us. He goes to various therapies during the week, all of which we’ll cover in future entries.

Some of his issues have a fairly clear diagnosis; others do not. The most obvious one is Sensory Integration Disorder. You’ll also see this referred to as Sensory Processing Disorder, Sensory Integration Dysfunction, and a few other things. The idea is essentially the same.

There is a growing sense that he also has apraxia of speech. He uses very few words and the challenge has been to understand why. He also has some issues with coordinating fine motor movements, which is most likely related to his sensory problems. As a result, he can’t really sign either.

He’s also very delayed in his eating skills. He was in feeding therapy for a long time and still is to a lesser degree. He only eats a few foods. It became clear that he’s not ‘picky’ but instead has sensory reactions to many types of food. It’s complicated, but we’ll get more into it later.

The good news is that he seems to understand us quite well and follows instructions as well as most two-year-olds. He’s a social kid and gets along well with most anyone. Thankfully, he has very few tantrums, and when he does they are very short.

The complicating problem is that he also has some other indeterminate developmental delays. Autism has been bandied about, but none of his therapists currently think that’s likely because of his social skills and general ability to tolerate situations and activities that kids with Asperger’s or autism usually cannot.

So, we’re on a quest to help our son decipher the world and grow into his full potential. We know other parents are going through this too, often without support or understanding of what to do. Our hope is to connect with parents who are struggling to understand what is going on and share whatever insights we have with each other.

I guess you could say that this is our way of talking through things in hopes of discovering the answers to our countless parenting questions. If we can find common insight and community with other parents and help each other figure things out, then we’ll have accomplished something here.

You don’t need to have a child working through anything we’ve mentioned above. If your child is having a hard time and you feel clueless or frustrated, you’re in the right place. We know that a lot of parents of special needs kids feel isolated, stupid, and frustrated. Be welcome here! You’re in good company.

This will be a tag team blog. My wife will share her wise and sage-like thoughts, and I’ll do whatever it is I do. We’ll try to keep it light-hearted and fun, but we aren’t bouncy, chipper types so who knows what else will come out of our fingers.

So, here we go!

Oh - in case you’re wondering, it comes from the saying, “He can’t find his own ass with both hands and a flashlight.”