Man I am so behind on my boy’s journals I hardly know where to start! Did you notice that Jim fixed the calendar for me so that at a glance you can see when I posted last? I am thinking about adding an email sign up for those who want to receive an email when I post. Although maybe that just takes the surprise right out of it !
Guess I’ll break this down into categories because there seems a lot to cover.
We’ll start with the top of the body and work our way down LOL!
Ty’s left eye is on the fritz again. This is the third time I have seen this pattern. He gets the surgery and then about six months later we start taking steps backward. He just can’t keep the left eye reigned in. If he is tired, sick, or having an “off” day it is very noticeable. More and more though I am noticing it ALL the time. What on earth are we going to do about this? He has another appointment at the end of the month and I am dreading the recourse. Patching or glasses will likely be suggested but I am telling you TY WILL NOT DO IT. Big long sigh over this one…….
Please pray that Ty will find a different method of expressing himself. Remember the whole beat his head on things tantrums? Well now he is resorting to scratching the heck out of his face. I am trying to keep his nails clipped and clean but it’s so easy to forget. I took him to the Dr. for this a couple of weeks ago HOPING he had an ear infection (isn’t that terrible…an ear infection seemed easier to handle though). The Dr. confirmed that Ty’s undersensitivity to pain was contributing to this “calming” behavior. Isn’t that wild? To cause yourself pain to reign in? It’s because he seeks the stimulation and it doesn’t register as “pain” so much to him. I’ll explain more about that later in this posting.
This kid is a major motor mouth. I have NO idea where he got this from . His therapists have told me that they think he will be behind by the time he reaches three but I have trouble believing it. I might be out of touch on this one but I think he does well in the communication field. His sentences are averaging about 3 to 4 words and remember, while he turned 2 in January he would have only turned 2 in May!
The one thing that concerns us a little bit is that he tends to repeat things. Very OCD. He isn’t stuttering – he is purposefully repeating. For example he will say “Graham Cracker” 75 times. He is especially bad with names. He will say someone’s name and repeat it over and over all the while they are saying “What Ty?” and he never wanted a thing – he just wants the attention. As it has been pointed out to me that this is a trait of autism, that raises alarm bells but autism is a spectrum disorder and while Ty does have SPD issues (explain later) – I think that is the extent of his autistic tendencies.
He is awesome at symbol recognition though.
Example 1: He can recognize the word “Disney” or “Disneyland” anywhere – even in teeny tiny print in a paragraph.
Example 2: He see’s the golden arches and instanstly sing’s “Bop Bop Bop I’m Loving It”. This is especially hysterical EVERYTIME we are in Walmart (they have a McDonald’s in our Walmart).
Example 3: He was holding a water bottle the other day and kept insisting it was chocolate milk. We debated back and forth over this until finally he was jabbing his little finger at the label trying to prove his case. I took the bottle from him and realized he was pointing at the word “Nestle”. Good glory how did he know that? I make him chocolate milk every morning so I got the cannister down to see how big the Nestle symbol was. It was very secondary to the Quick label. I was truly amazed over that one.
He is also very good at associations.
Example 1: His therapist showed him a picture of keys this week and he said “Keys. Turn car on”.
Example 2: He brought daddy the switch to our dining room chandeliar and said “Daddy light broken”.
Example 3: My mom said “Ty you are such a good boy.” He replied with “Read my bible!” My mom and I both were cracking up over that one. How in the world did he associate being a good boy with reading his bible? Obviously he has big ears and pays more attention to what I say than I realize although I don’t recall having said anything directly that would have inspired that association. Who knows.
Example 4: Jim on a whim looked at him one evening and in a robotic voice said “Luke…I am your….” and then let the sentence drop. Ty looks up and repeats “FAAADDEEERRRR” (Father). LOL. Did I mention that Ty is a Star Wars fanatic? Usually he like to talk about Vader but this week it has been Loda (Yoda).
Example 5: Last week “Granga” left a message for the boys. She started off by saying “Hi Tanner and Ty – this is Grandma”. Ty was in my room when I played the message and he gets this “in awe” expression on his face. With eyes wide as saucers he say’s “I am Ty…I AM Ty…I AM TY!!!!”"”" Then starts running toward the answering maching yelling “GRANGA!” into it. Was very cute.
Example 6: This week Ty and I sat down and watched baby Kambrie’s video together. When it was over Ty went into my room, got into my hope chest and pulled out his NICU photo album. He brought me a picture of himself wearing his nasal canula (oxygen) and said “Baby Kammy?”. I thought it was very perceptive that he noticed that she and he both wore oxygen.
He makes me giggle with his communciation everyday. Here are some other little funnies:
He has a bit of trouble with grammar but not abnormal for a two year old. Lately he is confusing my and I. He wanted me to help him get cereal on a spoon yesterday and he said “My help you?” which means “Will you help me?” He often say’s “My sit there!”
Someday’s I feel like I have twins because he talks so much he answers himself or speaks my part in a conversation. I have a couple of examples of this one:
“Mommy. I hungry.” Immediately followed by “I hungry too”.
He loves the word “too” and repeats many sentences in two parts so he can add it. Ty number one makes his request then Ty number two follows it up adding the “me too” part. LOL.
I told Ty to “Get over here” last week and he was in a real rush to do that (not) and he starts saying using MY tone and intonation “I’m watching Ty. I’m watching Ty.” Way too funny. To write that sounds like he was trying to mock me but his tone was just a copy of what he knew I was thinking and about to say. (When he is thinking about disobeying and I see the thought dance across his face I often say “I am watching Ty” to remind him that I am waiting on his appropriate response. Now he just say’s it before I do.)
I also giggle at the way he continually throws in the word “okay” at the end of his requests. For example: “I want ice cream cone. Okay? OKAY!!! The first okay is a question but the second okay is affirmation as if I just said yes. I think he talks FOR me more than he lets me respond.
Another cute Ty-ism is that he keeps forgetting when you use the word “uncle” versus “aunt”. He favors uncle so everybody is uncle so and so now. This was driving Jenna totally crazy. Especially considering she is his cousin. After repeatedly being called “Uncle Jenna” in frustration she say’s “TY MY NAME IS JUST JENNA – NOT UNCLE JENNA – JUST JENNA.” Can you guess what he started calling her? Yep. “Just Jenna”. LOL. It’s so cute I hope it sticks for a bit.
He also picked up the word “Um” and say’s that all the time. After being with many family members last week he got royally confused and when we got home I heard him say to Jim,
“Jim. Um Uncle Daddy. Um Just Daddy.” LOL – We both got big grins out of that.
Adding to Our Family?
No. We are not ready yet HOWEVER, Ty apparently is. He kept talking about babies the other day and I asked if he wanted a baby brother or a sister. He immediately responded with “Baby Sistah”. He went and found a doll of mine, named her baby “Sistah” and the name has stuck. Tanner on the other hand took part in this conversation by asking me to not have anymore kids. Why did that not surprise me LOL. The kid HATES change. He comes around though. In fact, he actually told me this month that he liked our old house and our new house the SAME. Now that IS progress my friends! (On the down side, after Tanner turned five he decided that he wasn’t quite ready to be five and is now insisting he is still four. Maybe at 5.6 he will acclimate? Goodness.)
Susie (Landen’s mom) and my mom have both pointed out to me that Ty doesn’t always rest his hands in a normal fashion. His right hand still closes fairly often. I read his neurology report this week and his neurologists mentioned that as well. Hmmmmm. Also noticing that handling eating utensils is very very hard on him but he tries so hard. He just can’t do it though. What age do kids usually start using silverware? Ty seems a long way off. His fine motor skills are still pretty immature.
Balance is still off. Noticed last week that he can’t squat and remained balanced and he has a lot of trouble turning and seating. He can do it but if he has too many physical movements (like step turn sit) he will usually tumble). He still runs in a pretty high guard too and falls frequently. His eyes get really out of whack when he is trying to move fast too so that doesn’t help him. I am also noticing that his toes curl and grip the carpet when he walks. The pediatrician told me that at the minimum he has a gait delay and everyone is thinking that there is a possiblity he has mild cerebral palsy on his right side. So mild though it’s tough to absolutely diagnos. I will be taking him to an ortho doctor and then his neurlogist again soon to investigate this further. The neurologist said in his report that he:
“has asymmetry of hand movement, right typically closed, although he was able to open it voluntarily..noted to have a babinski sign on the right but not on the left…clear evidence of global development delay…chronic static encephalopathy…” blah blah blah.
Sounds concerning but I was grateful for the honest report. The whole babinski sign thing is a possible indicator of CP. I won’t be surprised if he ends up with a CP diagnosis but I am no longer worried about this. On June 5th, the kid crawled out of his crib (thankfully he hasn’t repeated this) and he used the hand rail in the tub to climb up the side of the tub and reach to the top of the soap dispenser to get my razor down this week. He may have gross and fine motor delays, he may have mild CP, SPD and possibly cortical visual impairment and the list goes on…but the bottom line is…he finds a way.
Sensory Processing Disorder
I have been trying to study different diagnosis’s for Ty lately because when he turns three he will no longer be eligible for state intervention for his therapies. He will be turned over to public care and I will need to get it through the public schools. Since we are about 6 months away from this date it has been concerning me because while I hoped he wouldn’t need private therapy by 3, I have now decided that he likely will (and his therapists agree). NONE of his therapists or his doctors want Ty to be seen in the public school system because they think he will need more intervention than they can provide. For this reason, I am hoping for my son to fail their test. Apparently if he fails a developmental test that they use for determining long term care, he will then be eligible for DDD until he is 18. I think that would really benefit him so at this point, I don’t want him to pass the test. That sounds warped. Of course I want him to pass the test but only if he didn’t need private services (which I think he benefits from) and since I don’t think that is the case…well…I want him to get long term care. His therapists think there is a chance he will fail so this is a possiblity. I will not have him tested though until he is closer to 3 because I want them to apply the oldest developmental age possible to him so that we can gauge where he is at better. We’ll have to trust God’s intervention with this one.
As for SPD….
“The Out of Sync Child” a book on sensory processing disorders has been suggested to me over and over and I finally started to read it. I’ll share more about it in a later journal but it looks to me like this is a very accuarate diagnosis for Ty. SPD is caused by neurological disturbances (which of course he had – brain hemorrages). The five senses than organize differently than they do in a “healthy” brain. They don’t receive information the same way and they don’t interpret it the same. I know of 25 weekers who hate rain because it “hurts”. Ty is the opposite. It’s rare that something truly hurts him. Ty seems to fit into the category of “sensory seeker”. He seeks over stimulation because his senses are “dulled” (for lack of a better word). For example, he hurts himself on purpose, he doesn’t notice temperature differences much, he loves to press buttons because he likes the stimulation of immediate feedback -also why he loves the XBox, he likes spicy food like hot tamales candy, and sadly, he sometimes like to scratch or pinch people because he is fascinated by pain responses. He simply likes the reaction and it doesn’t feel the same to him as it does to others so maybe he is a little bit confused by it (and probably feels a little empowered by it to in all honesty).
On the other hand, he can be a sensory avoider at times as well. Sounds can be VERY distracting to him, he likes the lights ON, he as you well know, doesn’t like anything that lights up and sings (in fact he learned that if he sets his veggie tale larry boy off and then throws him to the grond he can stop the lights and music – now he LIKES larry boy because he likes the power of stopping the music). He has some texture issues with food still and won’t taste anything new unless he decides to put it in his mouth himself. He is very cautious about new experiences. He is wary of movement things like swings. He likes a schedule and gets set off by schedule disrupts. He also has some other little quirky things. For example, he won’t let ANYTHING in his crib. No sippy cups, no animals, no pillows no blankets. If you try and give him anything he’ll immediately throw it out and say “NO”. Today when he woke up from his nap the little corner of his fitted sheet was coming up and he was screaming like the house was on fire. When I went in to get him I asked him what he was sooooooo upset about and he pointed to the sheet. He didn’t want up from his nap until I fixed that sheet. He also STILL puts everything in his mouth. He really needs that “oral” sense to assess new things.
Now, most people have some degree of sensory issues that are normal so you may read this list and think “I do that” but children with SPD tend to have a LOT of varied sensory issues. Other things that tie into SPD is ADHD issues which Ty definately has AND dyspraxia issues (motor skills planning). I defintely see dyspraxia as a strong possiblity for Ty. It’s hard for him – very tough – to copy physical patterns. He can copy your words but struggles with physical imitations. For example, a couple of weeks ago Zandi was doing summersaults at Papa and Sweeties. Ty tried. His way of trying was walking around the room taking big steps with his chin high in the air. So I showed him slowly step by step over and over how to do a summer sault. He had no clue. If I said put your head on the floor and then showed him how to do it, he would lay down in a sleeping position. His only association to “head on floor” was sleeping so even though I was demonstrating the physical movements his brain could only makes sense of what he already knew. Meanwhile, Zane, my 1 year old nephew was standing beside me copying what I was trying to teach Ty. That really sent the message home.
However, this week out of the blue….Ty see’s Zandi do a sommer sault and walks over and perfect as could be performs one. Weirdest thing ever. He has been doing that since day one. It’s like his brain stalls on it and then all of a sudden it comes in a grand click and without further ado or practice – he just does it. That is why I can tell it is a “brain” thing more than anything else. He has the physical ability to perform the act but it takes a bit for his brain to tell his body how to respond. Once he has though…he HAS it.
Those are just a few examples of SPD..there are others. I figured I’ll be mentioning this more and more so I thought I’d explain at least a little about it.
One more cute thing about this and I’ll close because Ty wants to go eat an ice cream cone at the park and I best not delay him much longer:).
Last month we were walking down the sidewalk at church. Jim was in front – about 10 feet in front of Ty. The sidewalk came to an end and there was about a 7 inch curb – very large for Ty to manage. Ty saw his daddy step off the big curb. All of a sudden I hear him talking to himself so I get closer to him so I can hear what he is saying. As he approached the curb he repeated over and over “Big Step Ty! Big Step Ty! Big Step Ty!”
And THAT is why I don’t worry about my munchkin. He is learning to do what he has to in order to accomplish his goal. He knows what is hard for him and even at 2 he is beginning to just talk himself through it. Priceless. Truly priceless.