Seeing the autism specialist tomorrowI enjoyed your update. Let us know what the specialist says. (((Hugs))) Thanks for the update.All the best, Nowwhat Man! How fast do you type????? Glad to see you back, and it seems like things are moving right along. Let us know how it goes! Great to get an update. And WHAT an update. Take it from me. You can only really work on ONE thing at a time. SInce Jair seems to really want to communicate verbally (and DOES in his own way) I would work on that pretty-much exclusively for the summer. Sometimes other things fall into place a bit when the communication ability improves. Pump the speech therapist for info. Ask about PECS. Search PECS on the web. As I've said a MILLION times, it doesn't matter what their dx's are at this point in time. It matters how you address their deficits. States are not required to provide anything at all until age 3,which is why your EI is so lame. At least they are doing SOMETHING, though admitedly, not much. They don't even HAVE to do that. But they do have to provide services at age 3 that conform to IDEA. So, familiarize yourself with IDEA so that you can keep their feet to the fire as soon as Jair gets a preschool age IEP. I would definitely get my hands on the book Relationship Development Intervention. There are fun exercises there that Brianna would love to participate in and that will help Jair. Lia, too, as soon as she's old enough to participate. Check eBay. Lots of times you can get gently used autism books there. Or even new ones cheaper than at a bookstore. Feeling numb after a diagnosis is normal. But summer is nearly here and it seems to me all kids get developmental leaps during the summer. Probably because there's a lot of stimulation during summers. I can guarantee that you'll love working with the kids yourself if you get some guidance from the books. You go, girl! I've been kind of shut down since our first visit with the autism specialistlast month, I don't know why. Since December, I was wishing so much that someone would acknowledge what I see in my kids... and she did... and then the new frustration was that we couldn't afford ABA or other therapy. But I've been getting past all of that, and have found a local support group - YAY! I don't feel anything about tomorrow. I'm hardly even curious about how they act or what she'll say. It won't change anything! And I've continued to see improvements in both Jair and Lia, despite not having them in any formal therapy - just what we do at home. Jair... There are definite moments when John and I exchange glances and say "he is so autistic!" but then other times he does something great/ normal. Yesterday we were all driving somewhere, and Jair got stuck repeating "I. hear. car wash. Do you. hear. car wash?" LOL, over and over, sometimes in his monster voice. But then today, Briana said, "I like red." And he said, "I like. Bbbblue." Yay! Socially... -/+ Doesn't return smiles or use nonverbal gestures like waving (he used to wave last year), shaking/nodding head, give hugs or kisses... although we've really been working on the kissing, and he's starting to "get it," which is exciting. Today he hurt his finger and kissed it himself. Most of the time now, when we ask him "Kiss my face," he will kiss it, but sometimes he still presses his cheek against our cheek instead. "Give me a kiss" confuses him. -/+ Ignores/avoids other kids, except for his sisters here at home. I'm so glad for them, because Briana is like a 24-hour model/coach for him, and he has great affection for Lia - he asks for her when she's not around, and likes to make sure she has her sippy cup nearby. He likes to poke things into her mouth @@ or lead her into rooms (and shut the door on her, LOL, or try to put her outside!). When they aren't around, he reverts to crawling around alone, laying his head on the floor and sliding toys back and forth in front of his face. In public, he just stares or crawls around under things. + He will now sometimes say "Look, Daddy," or "I did it!" ?/- Social/emotional reciprocity? Hard for me to say, because he can be very different when it's just me and his sisters, and when there are other people around. He will crawl into strangers' laps, or give them hugs at the slightest invitation, but he won't talk to them or do anything they ask, sometimes completely ignores them. Even with me and his sisters, his reciprocity is questionable. He doesn't take turns, play games, show affection, or answer questions. He likes to sit near me, and often does what Briana or Lia is doing, to an extent. Communication... ?/- He was delayed in speech, with a regression at some point. He would repeat "bye" around 12-15 months? but stopped and didn't talk again until 24 months, and that was repeating words/phrases. He's never used signs, took a long time (25-26 months?) before he started pointing to label things, but if he wants something, he sometimes ~reaches~ toward it and screams, or pushes me to it, or asks for it by a word (not neccessarily correct word) - NOT by pointing to it. He is most likely to just try to get whatever he wants for himself. - No conversation! He won't answer questions, except (now) for our animal sounds game - What does the dog say? etc. "Dog say... Wuff!" He will tell me "Ouch" or "Funny" but if I ask "What hurts? where is the ouch?" or "What's funny? Is the cat funny?" etc etc, he will just keep looking at me, repeating "ouch" or "funny." - He has a robotic voice, pauses between words, and uses words in groups... "I-want-it.. ride-it.. Papa's-green-tractor." When it's time for bed, even if Lia isn't around, he says "Say Good Night, Lia" or "It's dark outside" (even when it's not) to us, or if he will often say to us, "Say good bye" or "Go clean clothes" if he wants me to go away. If he doesn't want something, he might say, "Say no thank you," LOL. - He doesn't play pretend, even though Briana and I are always trying to engage him. He just looks at us like we don't make sense, LOL. His idea of fun/play is limited to pushing buttons, climbing/jumping/crawling, or watching things move right in front of his face... or wrecking things and watching our reactions. @@ Behavior... ? I don't think he has an encompassing preoccupation with anything. He does love balls/spheres/circles, and he goes through attachment-phases - one was with his sandals, then carrying around some plastic gourds, the latest was imitating Lia, but that's starting to end, thank goodness. + Definite inflexible adherence to Rules. We can switch his daily schedule around, and he doesn't care, but he will tantrum if we don't do certain things in certain ways. @@ - No stimming... He will walk around with tightly clenched fists, and flap his hands occasionally when he's excited, but nothing all the time. He likes to spin wheels on little cars, and does this mindlessly. Well, maybe these are stimming behaviors, but not like anyone else would say anything about them. - Parts of objects... sure, since he doesn't use his imagination with toys, he is only interested in how they feel or move or look up close. He has definite sensory integration dysfunction. He used to slap his face when the sun hit it, and yell "The face!!" lol, but lately the main terror has been drops of liquid on his skin, which he slaps at and screams. Soup, or a tiny splash of water from his sippy, or tears... when he cries now, he slaps his face at the tears! My brother was in town this weekend, and instead of calling him "Uncle Kevin," Jair would sometimes refer to him as "Taco Bueno," LOL! You could look at his face and see that he KNEW that wasn't "right," and he would keep trying to retrieve "Uncle Kevin" instead. Also this weekend, he dubbed one of his blankets his "commercial," which took us forever to figure out what he was screaming/asking for. He has definite issues, and comes across as ASD, but maybe he just has sensory dysfunction and language problems. I know he is at least making progress, so I'm not too worried about it. Well, I say that NOW, at this minute!! ~~~ Lia has started waving, finally! Only when I carry her from a room and say "Say Good Night, Lia." She won't do it when we say "Say bye bye!" LOL, or if I'm not carrying her away. The other day we got really excited because she waved at John, when his back was turned, as we approached him. We couldn't get her to do it again, though. When she does wave, it's usually one hand, more of a flop, and the other hand flops a little, too. But she is using it in context, which is what's important. She still doesn't talk or point or reach, or shake her head, nod, show affection... She explores, is very independent, and gets offended/upset when we hold our hands out to her or try to hand her food/drink/toys. She squeals and crawls/walks away, starting to cry, or flaps her arms and screams. We have to set it down ~next~ to her. If she does want something, she does this horrible tea-kettle scream, and sometimes flaps her arms. She doesn't react to things that should be painful... She only laughs if you tickle her - otherwise she always has this blank expression with her tongue hanging out, LOL. When EI tested her developmentally, she scored between 4-8 months old in most areas, at 12 months old. ~~~ Look, my marathon post! This is to make up for not posting in a long time.  I had to give the latest update!
So we'll see what the autism specialist says tomorrow. Our EI program here is extremely lame... in case anyone here has forgotten all of my rantings about it, hehe. Our IFSP is a list of problems to work on, and we are supposed to be meeting for a hour once a week to discuss ideas for me to try. The social worker cancelled twice in a row, and I never rescheduled with her. It just seemed too worthless to me. BUT!! After we met with the autism specialist last month, she must have reported back to EI, because I just got a voicemail from EI, saying that they're going to send us a speech/language specialist "who is familiar with autism and really good with ASD kids." Boinggg! GREAT! We would love some speech and language therapy! And sensory/occupational, as well, if possible. Jair can't fed himself very well at all, and messes freak him out. He often won't eat unless I feed him.. or he will start touching his food and get carried away and squash it all - and then freak at the mess. If Jair and Lia are any kind of "autistic," I think the diagnosis will really help us get more services. I also just want to be able to tell my family/ friends that they really do have something going on - it's not bad parenting, or bad kids! I'm really happy to hear that Early Intervention is finally getting their acts together in regards to Speech therapy. I know what you mean about them seeming "so normal" at times. I get that all the time with my little guy. And then the next day it is like I have a completely different kid on my hands. |
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