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Posts Tagged ‘developmental therapy’

I meant last week to write about his developmental therapy and what’s been going on there. I get sidetracked very easily and tend to go days without opening my laptop. I probably wouldn’t get on the internet for a week at a time if it weren’t for my iphone. 

Anyways, we DID get a new therapist for DT, if you hadn’t been told yet. S is amazing. She’s so opposite of M who scared Luke. Anyways, we have decided our main goal is for Luke to learn to separate from his caretakers. Mainly, guess who. Me. I’m really struggling with this. He’s been with me NEARLY 100% of the time since he was born. I’d like to explain this.. 

When he was born I made a huge effort to hand him over to people immediately so they could take in all the glorious babyishness they could and so he could be comfortable with others holding him. I got a lot of comments on how good I was to just hand him over. I suppose not many new, young moms do that?.. I was so proud of myself!

Then, he had seizures. NO way was I letting him out of my sight. He had seizures in his sleep… I wasn’t putting him in a crib where I couldn’t hear him seizing. And video monitors dont work unless you’re looking at them. So we continued to co-sleep. So many people have never seen a seizure, don’t know what they look like, and are uneducated about them. Many people asked what to do during them and suggested that you put something in the mouth during the seizure … BIG NO-NO. Nick and I had terrible fears about someone caring for him an inadvertently hurting him during a seizure or something along those lines. I had never missed one of his seizures. The post-ictal state is so scary that I didn’t want to NOT be with him while he recovered. It became my obsession to be with him (or have Nick with him) 100% of the time if I could help it.

I had strict rules: He was to have limited time on hard surfaces, he had to be in the same room as me while he slept, he had to be touching me while I slept, he was never left unattended for even a moment (seizures can happen in a split second and I was afraid to even miss the beginning of the seizure because I found I was obsessive about timing it correctly to administer emergency meds at the right time to prevent damage to the brain)

So, do you get the picture now.. lol We joke at our house how OCD Nick is (was was officially diagnosed) but this really makes me seem obsessive. 

So, DT is a big deal. It pushes him out of his boundaries to do things he doesnt like, doesnt want to do, isnt used to doing, and wont do. Its pretty much a cry session for an hour every week and S is the therapist we like! Its sooo hard for me not to cancel DT, take him home and let him be happy. Most of you see my status updates on Facebook and hear about how much I hate DT every Tuesday. It ruins my whole afternoon after DT because Luke really hates it. 

After some really terrible transitions to get me out of the room earlier this week I decided that with the help of C (ST) and S (DT) that they would take him directly from the waiting room into the gym & rooms without me and see how it goes. 

Yeah… I usually don’t leave Luke with ANYONE. PERIOD. I do let my mom watch him sometimes when I have to work.. its rare, she has explicit rules that I pretty well force her to follow and I think I’ve scared her into submission to do it because of his seizures. Im sorry mom.. I hope that isnt the case though. Anyways, its a big GIANT deal to let him go back alone. I worry each time that he might have a seizure and I wont be there. But, Im sure they’ve seen them before. I’ve got to let go a little.

The DT, S, and I have decided that his main goal for DT right now is to separate. Let him be Luke, without mommy close by for security. If Im in the room he plays and every few seconds walks back to touch my arm and then goes back to play. It’s strange because he will usually walk to me without looking at me, with his arm outstretched, eyes on S. Touch me, again, without even looking at me… he will feel that I am there and them move onto play again. I’m his safe zone, his base. 

*sigh*  

Is there really anything wrong with that? I was an extremely shy child and still deal with that today. Nick was the same way. The poor kid comes by it naturally. Sometimes I think that pushing this on him isnt right. I have memories of being in daycare and crying because my mom abandoned me there. (pathetic isnt it!) Nicks mom had to work in the nursery at church because he wouldn’t go back without her. Maybe he’ll come around on his own? Probably. Nick wants Luke to grow up to be a strong, independent man so I guess this is our first big step that direction. 

Tuesday at DT and today at ST Luke was taken back without me. It was pretty heart-wrenching to watch him climb over them to get to me as they walked away. I could even hear him through the walls all the way to the back gym. That boy has some pipes! They promised me that they would bring him back or call me back if he didnt settle down. I never ended up getting called back. He did a great job over all. 

Both said that he wasn’t exactly happy but that he wasnt a screaming mess like usual. C (Speech) said he would cry and whimper as he partcipated today. S (dev) said on Tuesday that she couldnt put him down but that he trusted her enough to let her carry him around through the gym and even let her put him in a swing! 

Big strides we made this week and its official – I DONT HATE DT ANYMORE! Even just days ago I was seriously thinking about telling S that I wanted to go slower to allow him to get to know her better. He’s only been with her for 3 wks and it took him warming up to C for 3 mos. 

Things are getting better!

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So you may know already about my concern about our DT, “M”. I wasn’t sure if she was right for Luke man and the fact that he had ST right after an hour long session with her was very hard on Luke. I brought up two weeks my concern to our ST, “C”. She was very honest with me, reassured me about M, but also told me that it’s my choice to change therapists and it happens all the time. She’s a mom of a 4 yr old and a 18 mo old so she’s right there with me on concerns with little ones. She’s did say that if I changed therapists I needed to make sure that I had another DT lined up so we wouldn’t be sitting on the waiting list. I told her I would give it several more weeks and see how Luke did and how things worked out with her. 

Well, this Wednesday we were getting up and starting our day getting ready to go to DT at 9:15am and then ST at 10:15am. At 8am M calls and asks if we could come on Thursday at 9am instead so that Lukie wouldn’t have back to back sessions. I thought it was great! 

So we continue to get ready and our new leave time is 10am – just ST Wednesday then! Well, C calls me and begins telling me that ‘the big boss’ found out she was his therapy coordinator and she didnt know it. Somehow C told her my concerns and they all apparently agreed to switch his DT to someone that C believes would better suit his personality. I was a little shocked honestly. But, nonetheless happy! I think.

When we got back into the session room C ended up telling me the whole story and later on I got to meet the new DT. She’s so calm, pleasant, and non-threatening. Not that M was threatening or not pleasant.. she just came off differently than Luke man is used to. We decided to shoot for next Tuesday at 3pm! 

Today (Thursday) we headed to KIDSource for DT with M like we had set up on Wednesday. Luke did great! Well, he flipped out every time a therapist walked in because he thought they were going to take him away from me. M let me go back and stay this time (thankfully). Once Luke realized I was staying he let go of me a little and participated. It’s so hard for him sometimes. He would take a few steps away from me and literally fall into my arms. Then it got better – he began to step away and just look back at me to make sure I was there. Overall, it was a good session because we both noticed his skills were improving and his focus time was lengthening. 

After it was over she said something about taking spring break week off and we would meet back up the week after. Huh. Someone is confused here. Maybe it’s me. Or her. I don’t know. I’ll just talk to C next Monday since she’s not taking spring break off. Maybe they haven’t told M yet. 

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Wow. Some days therapy is sooo hard. Not just on him, but on me too. Wednesdays are the long session days. It starts out at 9:15 am with M for developmental therapy (DT). We’re with her for one solid hour. Luke is so “shy” and she really pushes him and he’s not comfortable with her yet. It’s hard for me to let her do things that are out of his comfort range. I just want to say “He doesnt like that” and take him home back to where he is comfortable. A lot of what she does crosses over with speech so that’s fantastic that he’s getting that reinforcement. M has been trying to get Luke an OT (occupational therapy) Evaluation or a PT (physical therapy) evaluation. I havent gotten the call yet about scheduling. She had Cory (part owner of KIDSource & physical therapist) come to look at Luke. He went over and pick Luke up and he didnt cry. We all looked shocked… Luke is known as the cryer up there. Anyways, as soon as Cory picked him up he said, “Yeah, he’s got low tone.” He said low muscle tone wasn’t the same as muscle strength. He kind of wiggled Luke around while he held him under his arms and his limbs just were like jello. He kind of cradled him upright and shook his arm. He was like a noodle. Apparently, at this age (and younger) kids should tighten up their muscles when you pick them up, if you move their arm it shouldn’t be floppy, and if you hip carry them they should squeeze their knees to help hold on to you. I knew instantly Cory had to be right. The few occassions that Luke has squeezed me when I hip carry him it shocked me. He’s only recently squeezed in the past couple of weeks. I can only recall two times he got angry and wanted down or to move closer to something and he squeezed with his knees.

Cory said that when Luke hits 15 months he will enter the next age bracket and we can then do a PT/OT evaluation. Luke is 13.5 mos now and he wants me to work on some PT/OT stuff at home. He gave me lots of things to try. M has all the paperwork ready to go so the day he turns 15 months we can do the eval. They seem to think he needs PT. Luke is pretty unstable when he walks though so, Im sure it would help. He pretty much walks like he’s drunk. He has a “wide base” when he walks, meaning his stance is wide between his legs to compensate for his balance issues. He has made no improvement on walking since he began walking at 10.5 mos.

Also, during DT something happened.. Luke broke down.. and they came to the conclusion that he not only has feeding sensory issues but also other kinds of sensory issues. I kind of felt like this was coming on but what NOT going to pursue it. I’m shy, Nick is shy.. I was hoping Luke was shy. Anyways, I won’t go into all that right now. It’s kind of stressful.

So, at 10:15 C came to start ST (speech therapy) with a very tired Lukie. It was mess. He just doesn’t get as much out of ST when he has been there for an hour already. We’re trying to get M’s schedule figured out and maybe we can come another day so Luke doesnt have to struggle with being there for 1 hr 45 mins. They would rather us combine therapies though and help Luke adjust to accepting it. Blah.

I had a photo on my iPhone ot show C.

photo

See his tongue? The right half is curling to the left side. He does this sometimes and I thought I would ask if it had anything to do with his trouble eating. She asked if he did anything differently on one side to the other.. like.. half a smile be delayed. Well, actually.. yes! It was his trademark early on that he did a ‘half smile’. Today she actually caught him doing a half smile and referred to the photo to see if it corresponded to the side she saw delay. She said she needed to think on it and watch when he eats more before she can make any conclusions.

Also, he’s still got that “thing” on his neck, is running a fever for day #8, and the antibiotics are upsetting his tummy still. The kid doesn’t feel too well, so he’s not eating solid foods too well. Maybe just a bite or two here and there. He’s kind of stated cycling backwards in his eating because he is sick. C wants us to watch that. If he continues to be hot and cold with eating she said we’ll really need to “Do something” about it. Im not sure what but I didnt like the sound of it.

On a brighter note, I did get a fresh urine sample to T in neurology at ACH. In 4 – 8 weeks we will have the results of the PKU test.

sleeping

How cute is this?! He’s covering his face up while he sleeps.. And see that nasty lil cut finger? The sneaky lil dude grabbed my coke can and stuck two fingers in the opening and proceeded to throw the can on the floor! He cut two fingers! It just bled and bled. He’s a trooper though!

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And look what mysteriously showed up in the fridge! Luke is my lil “door man”. If I open a door I call him over to shut it when I need it shut. Most of the time I get shut in whatever I’ve opened though. For instance, I often get shut inside the pantry, the fridge, the closet, etc. He cracks me up! He also loves to “knock knock” too. He’ll close himself in my walk-in closet and yell out, I then say “Lukie, knock knock!” and he bangs 3 times on the door. Always three times! Then I open the door and let him out.. Rinse, repeat.. 50 bagillion times a day.

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