Three months with no update on JJ...there is so much to tell!
JJ is showing huge improvements in so many areas. It is exciting to watch.
1. Word Retrieval: I have learned that JJ's issue is not a struggle to learn, per say, but in retrieving appropriate words. He has learned all of his colors with 99% accuracy. Sometimes he messes up yellow. Now we are working on those difficult shades of colors when, depending on who you ask, it may be yellow...or it may be orange;) We have moved onto shapes...he is getting it:)
I would say that, given enough time, he is able to retrieve the words he is looking for about 80% of the time now. The rest of the time he is now readily willing to ask "what is that again?" or "what is that I eat again?" Sometimes after he asks the question he is able to answer himself before we figure out it:) I try to find a pattern in the words he can't retrieve but there doesn't seem to be a pattern to it. One would think that it would be more novel or less used words, but sometimes it is words that he uses often (like cheerios). He will still ask "What I eat tomorrow?" which means "what did I eat yesterday that I liked?" Sometimes he will ask "what I eat last time?" Of course that is a very open question and we have to use context and him pointing to it, saying who he ate it with, where he ate it at, etc for us to figure out what the food was.
An example is that he loves corn dogs. He, however, cannot seem to remember the word "corn dog." So, he will ask "can I have one of those hot dogs with the stuff on it?" We always respond with "A corn dog?" to be sure that he gets feedback on what the word really is, but he can never retrieve it correctly. One of these days it will come:)
1a. Letter Retrieval: In October we started intentional home school preschool with him. In two months he can now identify A, B, C, and D (He still calls /e/ /a/ which tells me he knows the letter but can't articulate it correctly yet). We are soooo happy! Rather than teaching him the names of the letters, we are just teaching him the sounds for now. We have been told that will create less confusion for him as he tries to learn/retrieve only one piece of information for each letter (except vowels. We will deal with that later;)
2. Pattern Recognition: Boy or boy is this kid good with patterns. He may not be able to retrieve the word to tell me what comes next (e.g. circle, etc) but he can show me. I think it comes from all of the video games and Kindle/Ipad apps that the kid plays with (although that is a "chicken and egg" question - maybe he is good at those because he is good at patterns?). He can't read but he knows exactly what button to push/swipe to get anything to happen. He is leaps and bounds beyond me in understanding those things.
2. Frustration Tolerance: With his new found retrieval of words, he is MUCH MUCH less likely to have a temper tantrum. I would say that if he has one a week it is a lot (the full out screaming flailing tantrums where he needs to be removed to his room to calm down as he will not tolerate being in our presence to calm). Thankfully even in those situations he calms very quickly once left alone and comes back apologetic and peaceful. Grace ramps up in those situations so it is always surprising to us that he calms down when left alone. He did have one of his tantrums in front of my brother last month, but I don't think he has more than 3 since then. Since he used to have 1 - 3 day daily, it is a delightful improvement:)
2a. Repeated Requests: Not having a full out temper tantrum is one thing. Repeatedly asking for something when being told "no" is entirely something else. This kid has the stubborn tenacity of a bull. He certainly teaches us that if we are going to bother to say "no" there had better be a good, detailed reason for it that goes far beyond it being inconvenient for us. He does very well with logical answers. He does not do well if it is inconsistent with something we have allowed in the past (unless there is a reason for the disparity).
3. Articulation - I am learning the difference between articulating words and word retrieval. They are obviously very different but I never had cause to have to think about it before. His articulation is probably at about 90% of the time understandable by our family. I know that he is not understood at that level by people outside of the family, but it is delightful that we can understand him so well. In this category novel words are the hardest for us as we do not yet know how he says a word. However, I think that it is probably only 1 - 2 times a week that he asks for something that we cannot figure it out by context or other verbal/physical cues that he gives. With that said, usually he says a string of syllables and we catch the main words and then interpret what the rest of the words must have been. But it is still a huge improvement for him and makes him, and us, happier that we can communicate so well:)
4. Preschool: learning is not a problem for him. He learns information very quickly. However, being bored with a school task is a very big problem for him. We learned quickly that he will deliberately answer us incorrectly once he knows something and is just bored with us asking him again. He soaks up information quickly and is extremely curious. Therefore, doing it the rote habitual way every day does not fly with him. I have learned from watching his speech pathologist work with him how to keep him engaged. I am thankful for her expertise.
5. Switching Therapists: that leads to the next sad news. He has had 2 speech language pathologists over the past 10 months. I am sooo thankful for each of them and the role they played in what he needed at the time. But now the organization has taken on a new contract and these two therapists will be switched to inpatient work and we will be getting a different therapist. God helped move my heart when we showed up 2 weeks ago and the new therapist was there since his current one had a medical emergency. So when they called me last week about the change I was able to know who the new one was and know that JJ worked well with her. Apparently she has even more training with Apraxia than the last one so I will have to trust God with his. I guess it was unrealistic to expect that we would have the same SLP for his entire 3+ years of therapy. I worry that he will backslide since the new person won't know what has been doing, but they assured me she would be fully briefed. It has just been hard to know that the one we started with (the one who diagnosed him, started with him, taught me so much about Apraxia, was so patient with him for the months he would only hide under my legs on the floor and barely engage her at all, and who prayed for him by name every night) will not longer be working with him. On the up side...are you ready?????
JJ HAS BEEN GOING IN TO THE SLP BY HIMSELF!!!!!!!!!!!!!!!!!!!!!!!!!! Even when he met the new person last time!!!! He knows where I am sitting and if he hears a noise in the lobby he opens his therapy door to see if I left him, but he is going into therapy by himself! I can hear everything through the door and he seems to be doing better than if I were in there. He accepts her (their) direction without challenge. He is doing great:)
5a. Stranger Anxiety: In general he seems to be improving with his willingness to talk to strangers although still stares a lot or grunts his "yes" if someone asks him a question. However, in a public place he only insists on my holding him less than 10% of the time - he is getting more comfortable! He has no problem tearing around the church by himself with 200 people milling about (that is not the greatest thing, but I am choosing to see the blessing in it;)
6. Sleep: ehhhh, still chaotic and unpredictable. He had a week about a month ago where he was not falling asleep until 1:30 a.m. I changed up some routine for my own sanity (and need for sleep) and it has worked. Now he falls asleep in our bed (usually around 11:30), and I carry him to his bed and he sleeps usually until 5:30 - 6:30 when he come crawling back in our bed. Today he actually slept in his own bed until he woke for the day! I suspect he will be gone from the house before his sleep patterns actually look like any normal pattern. The only problem for me is that my body now wakes me up at 6:30 anticipating he will be waking me and crawling in with us so I can't fall back asleep (I hate being woke up and if there is a chance of it I simply cannot fall asleep - it is quite annoying).
7. Growth: He has been eating a fair amount for him. He is so excited that he can now almost reach the end of the tub with his toes when laying down in the bath. I measured him and he...has grown 4 1/2 inches in a year!!!!!!!!!!!!!!!!! He has grown 2 inches just since May! He is currently at the 50th percentile:) For so long we were thrilled when he was at the 20th percentile, happy that he was actually on the growth chart. I am so thankful for the speech therapy helping him learn to swallow better so he eats better:) It isn't just an issue of swallowing, but the nausea that he seemed to wake with before doesn't seem to be as much of an issue. He hasn't gotten car sick in several months. He just doesn't seem interested in much food (wish I had that problem!).
8. Routine: JJ is all about routine. Not to the point of him being autistic like - but he likes his routine. For example, at bedtime: he must watch one Garfield (he can be persuaded to watch another short show if need be), then a bath with bubbles (a few drops of Lavender to get him sleepy;) and he insists on Epsom salts (yes, he is an odd child;), with dinosaurs and other toys. After that he has a chair he must sit in while I feed him a bowl of cereal. He is willing to switch that up some but goes on long streaks. For 2 weeks it may be Kix, the Cheerios (hates honey nut - must be plain), or Chex. For 6 months he has refused sugar, but in the past few days he wants sugar again. Then he wants a glass of plain white milk (he was on a chocolate milk kick for awhile, but he is back to white now). After that he brushes his teeth, I put Essential Oils on his feet to help him sleep, and he crawls in my bed with a pillow and falls asleep. It usually takes him about 15 - 20 minutes to fall asleep most of the time. It used to take him over an hour. Sometimes it is even just 5 minutes! Since it usually takes me over an hour to fall asleep I am happy with 15 - 20 minutes:)
He also likes routine with food. He likes it prepared a certain way, determines if he needs a spoon or fork with that food, 80 percent of the time he says "mommy you feed me?" He likes "chicken" (all meat is "chicken" to him or he won't eat it) but it must have extra seasoning on the plate for him to dip the meat into (that is a habit we can thank his biggest brother for emulating for him;)
Changing his clothes in the morning is also something he thankfully will now do for himself, but he has a very specific plan on what happens, in what order, what gets worn, etc. Heaven forbid if someone actually suggests certain clothes for him to wear or not wear. I have decided that as long as he is dressed for church, I will not care what state of wrinkedness they clothes will be in. I simply got rid of the "every day pants" with the holes in them so he couldn't choose them lol!
9. Language: I never used to understand the difference between learning "articulation/speech" and "language." But, now I do. JJ has the most interesting ways of constructing sentences. We joke that he is like Yoda. I always find it endearingly cute, but I also always forget to write it down. It is like listening to someone where English is their second language and the verbs and nouns are not in the correct order for English. I don't think about it too much since it is just the way that he talks, but everyone now and again it will hit me how odd it is to others.
Even so, he has a grasp on a lot of "language" concepts that our Middles struggled with. For example, location prepositions. For something different in preschool one day I spent a lot of time asking under/over/on/below/etc questions. He got them all correct. It is fascinating to me to try to understand what he does understand and what he does not.
10. Why? And, finally, his biggest change is that he has finally moved into the "why" stage. Fully and completely. Everything is met with a "why." And because he is so smart and so curious the answers required are much more extensive than we ever had to do with the Middles. He keeps us on top of our game;)
As I type this and focus on "language," I have to laugh at myself. After working with Buddy teaching him about Gerunds, Participles, etc I realize that I don't understand them, have no motivation to try to understand them, and probably drive crazy all of you English people who read this and see my many language errors. I never learned about them in high school and can remember a professor in Graduate school putting red ink all over my papers about "hanging participles." I still don't get it lol! That all gives me perspective that no matter what JJ's issues are, his tenacity and desire to learn will get him wherever God needs him to go in life...even if he does speak like Yoda;)
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