Last time I wrote, we had just seen a pediatric neuro. Since then, we’ve seen a developmental therapist and even had the ADOS test. Same results. He doesn’t present as a child with autism, however he may eventually be diagnosed with a spectrum disorder. His apraxia is severe enough that it’s causing limitations on a lot of skills which could be misinterpreted as ASD. It’s going to be a “long, hard battle” but he will talk someday. That’s what they say….

I won’t lie. It’s really hard. Really, really hard. Other kids his age are having conversations and he can say about 4 words, and even those words aren’t clear. I am sure that others don’t even understand. On the bright side, receptively he’s doing great. He’s even somewhat potty trained. It took about 2 days only, he decided he wanted to do it himself and now he goes #1 in the potty all the time. #2….not sure how I’m going to get that going but hey, he conquered #1 in no time and I’m happy with that for now. We push him so hard, I’ll give him a bit of a break on that.

Luke’s little sis has become a wild child. She wants to do everything he does, she even banged her head for awhile because he did, so that was a fun stage. She turned 1 in June, is walking (on her own terms of course) and says a few words. Sadly she says as many as Luke, if not more. He loves her, she loves him, they chase each other around. I think since she’s become more mobile, Luke has been happier because he realizes she’s there to play with him. They’re really cute together.

It’s been recommended to us that Luke start pre-school and ABA. I don’t know which one terrifies me more. He will start school in October, we have the ABA consultation in a couple of weeks. The fact that he is unable to vocally express himself is causing more frustration and behavioral issues the older he gets. He know more and can’t express it, and it’s really tough on him. We started the picture exchange system and maybe that will help, but his patience is what may hinder that. I’m really anxious to see how he’ll do with ABA. I’m also anxious to see how we’ll pay for it.

This summer, the kids have been outside a ton, swings are their fave, Luke likes slides now and goes on his own. He jumps a lot now, thank you very much OT. Unfortunately we live in the midwest and the winters are brutal, so I’m really hoping there’s no regression from being in the house so much. I guess pre-school will help with that.

Luke does answer yes or no now, which helps tremendously with his frustration and patience. We ask a lot of questions, he’ll shake his head no or say “yeah”. I feel like he’s really come a long way in so many areas, but that stupid apraxia makes it so hard for him to do anything with his mouth.

This weekend we are taking him to see Thomas the Train in person…I hope he doesn’t hate it. I hate that I have to think that way, but it may be overwhelming. Hopefully he is in a good mood 🙂

A few weeks after Luke was diagnosed with autism, he was not diagnosed with autism.  HUH?  That’s right.  We saw a pediatric neurologist who has decades of experience who upon the moment of stepping into the room said that Luke has Apraxia of Speech, possibly Motor Apraxia and of course, Sensory Processing Disorder.  He reviewed all of the medical records and therapy notes that I sent prior to our appointment which consisted of a packet thicker than an Encyclopedia and was “encouraged” by Luke’s receptive language.  I will agree that Luke knows his stuff.  He’s really a smarty pants.

After an hour and a half of questions and answers and of course me grilling the doctor on why he doesn’t think it’s autism, my husband and I (and Luke) walked out like a 1000 pound weight was lifted from our chest.  Not that we’re 100% convinced it’s not autism but the doctor was so positive about Luke’s future that it somewhat gave us a sense of relief.  He said that just because a kid has the same characteristics as someone with autism doesn’t mean he has autism.  Luke does some weird things with his fingers, he crosses and uncrosses them, then looks at them in all different angles.  He called this a stereotypy, basically saying that a lot of “normal” people have repeated movements like shaking their legs or tapping their fingers.  In the couple months since the appointment, he has really decreased the frequency of this.  

The neurologist sent us for an EEG to see if Luke is having seizures while he’s asleep causing the sleep disturbance.  It came back normal, and coincidentally he has started sleeping better.  It’s possible that when his little sister was born that it caused such a life altering disturbance to our sensory boy (one of our OT hates that name but hey, at least we make light of this shitty situation) that he had such anxiety that his sleep was just horrid.  He still isn’t a fantastic sleeper and he still thrashes but overall, he’s doing so much better.  Usually 10 hours a night, sometimes he wakes up briefly throughout the night, but it’s rare that he is up for several hours.  The neuro did say that he’s seen kids in and out of disorders all through his career, hopefully Luke is out of the sleep disorder for good.  Poor guy.

Bottom line, the neuro thinks he will catch up to his peers verbally around age 5.  He said we need to continue the same therapy we’re doing now.  He kept saying how encouraged he was in the receptive area and how Luke “wants” to communicate. He said his low muscle tone is only mild at this point.  I attribute that to the trampoline in our living room.  It’s seriously helped him so much.  He also said that Sensory Integration Disorder (this is an old schooler) is “the real deal” meaning that it’s really tough.  We couldn’t agree more.

So, again, walking out we felt so much better.  Luke struggles, believe me, but hearing a neuro say all those positive things really has helped us.  I’m not as psycho about everything like researching SPD, ASD, all of that on a daily basis.  We still push him to do sensory activities like we previously did at home but his diet we are a bit more lax on.  And you know what, it’s fine.  My baby struggles enough so if he wants some pasta, so be it.  He eats healthier than most adults I know so I feel good about it.  Also, his sister is now one and he is realizing that she can play with him so slowly we’re getting to the point of him liking her.  He actually laughs when she laughs now.  Imagine that!

Next Tuesday we have an appointment with a developmental pediatrician.  The neuro suggested it, we have had the appointment set for months.  She will do a thorough screening on him.  Who knows.  Maybe she’ll say he’s on the spectrum.  The main point is that we will have another professional opinion and see if any change in therapy is needed.  That’s my top priority.  Other than that, my boy is having a good summer, he has a pool, a water table and a sandbox.  How’s that for sensory input?