New IEP

Todd, Bronson and I sat through a 3.5 hour IEP meeting on Friday. Yup.

THREE AND A HALF HOURS.

I think the ten of us were all starving by the time we got out of there. No one had eaten lunch and we went from noon to around 3:30. It was during Garrett's school time, so he was in class. Bronson did very well playing in the room and going to his friend, the principal, when he needed something. She even had him go into the auditorium for the holiday assembly for a little while. He loved it.

Garrett has an entirely new IEP now. We even changed his IEP category. His last IEP was classified as Developmental Delay and while that is one of his diagnoses, it doesn't entirely encompass what his needs are. He is now classified under the Autism category, which we all think is a better fit.

His last IEP noted delays in fine and gross motor skill, but he did not have services for either of those in his IEP. He has been evaluated at his new school and now has some new goals and new services being provided. They'll be addressing his sensory and safety issues as well as his motor skills.

The school's Speech-Language Pathologist will be working on some augmentative communication devices for Garrett to use during school, like a "one-step communicator". We spoke about sign language since his private speech therapists and his ABA team had been working on that for the past year. I feel like he is too prompt-dependent and the sign language has become frustrating for all of us. The SLP feels that sign language often increases prompt-dependency, making it ineffective.

The team feels that being in an inclusive environment is working well for Garrett. In just a few weeks, he has made some great progress in transitioning and in playing with his peers.

It was a long meeting, but honestly, I didn't mind because we got a lot done. I feel like this IEP is more thorough and that this team actually cares about Garrett.

The Wonderful World of Special Education

I met today with Garrett's teacher, the school's Occupational Therapist, Speech Pathologist, and Principal. We were filing to modify his current IEP (Individualized Education Plan). They noticed while reviewing his IEP from Virginia, that although Garrett's scores for motor skills were extremely low, there were no services for OT or PT. There was one OT goal in his IEP, but no services. We're going to correct that.

They are going to observe and see what kind of help he needs. If further evaluations are needed, they'll create and assessment plan.

One of the biggest modifications to his IEP is that he went from a self-contained Special Education classroom to an inclusion setting. So far, he seems to be doing well. His teacher said that he's been doing well with eye contact, and is even starting to give eye contact with some other students. He even tried to join some other students while playing on Friday. I'm very excited to see how he does the rest of the year.

Wanna see what a change in routine does?

No ABA and no school has taken it's toll on Garrett. His nap schedule is all over the place and I'm not sure what to do about it. Trying to keep him occupied while trying to unpack and take care of Bronson is nearly impossible.

His school registration has to be signed by our Sponsor (Daddy), and since Daddy isn't available right now, the paperwork is just sitting on my desk. Sigh.

We notified Tricare ECHO that we've moved, but they can't assign us a new ABA provider until we have a new ABA referral. So we went to Garrett's well child visit today and got a referral for the developmental pediatrician, and now we have to wait for an appointment with them to get the ABA referral.

I'm really not sure how much more of this I can take. At least we know that we'll be here for two years. But I'm pretty sure that we're looking at getting out after that. These moves are horrible for Garrett. The break in therapy and the break in routine almost destroys any progress that we've made.

School and ABA

Garrett has ABA for two hours, four days a week. We drive the 35 minutes home, feed him some lunch and send him off on the bus. When he gets home, he usually doesn't wake up as I get him off the bus.

He gets up at 6:45 and is going non-stop until 3pm. This poor kid is exhausted.

I don't know how well he's doing in preschool because he can't tell me. There's a notebook that comes home every day to tell me what they did in class but I don't actually know how HE is doing.

I still feel like he's making some progress developmentally, but his behaviors have gotten worse. The spitting has returned. The headbanging has come back, too. He actually kicked himself in the head today while we were in the car.

I know that this is going to take a long time, but it's hard to watch.

First day of school

We had a very busy day today. We rushed out the door at 6:45am to take Daddy to work and head across town to ABA. Got out of ABA at 10, home at 10:40, packed his big backpack and ran outside to wait for the bus at 11. He didn't get home until after 3 this afternoon and he was exhausted.

I'm assuming that he had a good day because I didn't get a call from his teacher. But since he can't tell me how his day went, I have no clue. His bus aide said that he spit the whole way home, which doesn't surprise me, considering how tired he was.

Hopefully the week continues without any problems.

Preschool!

Garrett will start special ed preschool next Tuesday. We went to the school to meet his teaching team tonight. He loved the classroom. He went straight for the trampoline.

Garrett will be taking the bus to school after ABA and will be at school for three hours, five days a week. He'll be getting speech at school. They didn't include Occupational Therapy in his IEP, but his teacher said that they do work on fine and gross motor skills and if she sees something that needs attention, she'll make sure that they put it in for him.

Updates and such

We are working on eating with utensils now. He's doing pretty good, we just have to keep an eye on him and make sure he doesn't try to use his other hand to grab the food.



He really likes to draw, but he started chomping on crayons again, so we're sticking with a magnadoodle for now.

His ABA team is concerned that he is prompt dependent. He knows the sign for drink. He has used it independently on occasion. He knows when he is expected to use it, but will not sign it unless he is being prompted. We have slowly started to use less hand over hand, but I still need to touch his elbow for him to sign. This isn't good.

We thought that he knew what his signs meant, but now we're not sure. We tried to teach him "please" at his OT session on Friday. As soon as we took his hand, he started to sign drink eventhough there were no cups in sight.

So many new things!

Finally, at 31 months... Garrett draws with crayons (instead of eating them).



He also eats spanish rice and plays peek-a-boo.

Applesauce!

Garrett has been eating applesauce since Tuesday. I tried to feed it to him with a spoon and he wouldn't go for it. I was ready to give up, but decided to put some applesauce right on his tray. He tried to move it and didn't like that it stuck to his hand so he wiped it on the edge of the tray. When it still didn't come off, he licked his fingers. His face lit up, so I knew that he liked it. I set the whole bowl of applesauce in front of him and let him go at it. He shoveled into his mouth with his hand.

He's had it four times since then and he really likes it.

Another big step for Garrett.

Occupational Therapy - Session 2 with Michelle

Michelle gave us a new sensory brush and taught me to combine the brushing protocol with joint compression. We did 10 reps at the beginning of the session and Garrett calmed down almost immediately. He sat down and played with us for about 40 minutes. I'm supposed to do it every two hours, but Michelle said that we can just try to do it 2 to 4 times a day and work it into our routine.

Michelle is really trying to work with me on Garrett's feeding issues, since most of his problems are sensory related. We made a list of foods that he will always eat, foods that he eats in cycles, and foods that he always refuses. She also made note of his new preference for straight-from-the-freezer frozen waffles and the fact that he takes bites of bagels, spits them out and then goes back to them to eat.

We are going to combine textures to see what he does. It's going to be a lot of trial and error.

He signs drink!

Garrett has been signing drink at ABA for a few weeks now, but he would never do it for me. I've still been doing hand over hand and making him sign before I give him a cup and he would just grunt and get mad at me. Today, we did the same thing. I made him sign hand over hand the first time. He took a drink and handed the cup back to me and then made the sign with him hand and I pushed it to his face and said "drink". The next time around, he did it by himself!

THIS IS HUGE!

I was sitting on the couch tonight watching a movie with Bronson. Garrett was playing with some toys in front of us. Suddenly, he walked up and climbed on my lap. He does this every once and a while, so I didn't think anything of it.

But then he grabbed my hands and put them on my face.

He initiated a game of peek-a-boo!

This is BIG!

Update to head banging

We met with a physician's assistant at the base clinic on Friday. She said that Garrett has a hemotoma and that if the behavior doesn't stop, he will eventually develop a bone callus.

No bueno.

She did recommend a helmet. I picked him up a martial arts sparring helmet at a second hand store. It doesn't fit him correctly and he hates it. I sent an email to his OT, since we won't see her again until Friday. I'm also thinking about sending an email to his developmental pediatrician and see if he can get Tricare to cover a real "special needs" helmet. Those are pretty expensive since most of them are custom fit.

The PA said that the next step is anti-anxiety meds. She said that's the last resort, but unfortunately, it would be next step if we can't get him to stop with behavioral therapy and the helmet doesn't deter him. I would HATE to put him on meds already. He's still so little.

Head Banging

The head banging stopped for two or three weeks. He's doing again and now he's hitting his head even harder. I made him an appointment with a doctor in the military clinic. It's not his regular doctor, so we'll see what happens.

I'm pretty sure that our only options are medication, a helmet or just continuing with ABA and trying to find a different behavior that fills the need.

I really don't want to put him on medication. He's so little.

Eye Stim

Garrett has been doing something with his eyes for the past two months or so. We call it giving the lights dirty looks because that's what it looks like he's doing. We usually stop him before he gets too into it. Today when I picked him up from ABA, he was doing it while I was talking to his therapists. I didn't stop him because I was getting a recap of his session. After a minute it went from what you see in the video below to rolling his eyes back. I finally put my hands over his eyes and said that it was creepy. One of the ABA therapists said that it's actually stim. I've never let it go that far, so that had never occurred to me.

Today's Update

Garrett woke up with a runny nose this morning. It wasn't too bad, so we packed up and drove through the slushy snow to ABA. When I picked him up, they said that he had done great with his program but wouldn't eat or drink. They said he was pretty grumpy and that his nose had been running constantly. At least he did his puzzle and shape sorter!

After a nap, Garrett had a fantastic speech session. He did the shape sorter. When he was finished putting the shapes in, he tried to reach his hand in and grab one of the pieces. His therapist said "Open?" and he replied with "oh oh oh". One of the highlights of this week's session was the blanket swing. We've done it with Garrett before. He liked it, but never really communicated that he wanted more, just that he like it. Today, we did it once and he repeated the therapist when she said "Wee!". When we stopped, we both let go of the blanket. He stood up and came over to me. I asked him what he wanted and he took my hand and put it over the corner of the blanket and said "Wee." I'm so excited! Unfortunately, the blanket swing takes two adults, so I can't do for him all the time.

Speech Therapy, 2/24

Garrett session this afternoon was great. He decided to sit on his trampoline for the entire hour, which was just fine with us. Every once and a while, he would stand up and jump, then sit back down with a toy.

He gave us a lot of eye contact today. We were trying to get him to sign "more" by withholding toys that he needed. He could see them and would try to grab the therapist's hand to show her that was what he wanted, but she stopped him. He eventually would hold out his hands for us to manipulate, but still resisted us trying to make his hands touch. About twenty minutes into his session, he did sign "more" once. He wouldn't do it again.

He is making a lot more vowel sounds now. My favorite is "oo yee". Mostly because it sounds awesome.

ABA progress and a new speech therapist

The report from ABA this week is that Garrett is no longer head banging. He still gets frustrated and rocks, but isn't getting to the point where he is hurting himself. He was very resistant to signing last week. I've been trying to get him to sign for the past year with no luck. The past two days, he has let the therapists sign hand over hand with him. Today, I tried it with him during out afternoon snack and saw it in action. I showed him some cereal and he put his hand up for me to manipulate. I put his other fingers down and said "cereal". He then looked at me and nodded.

We met Garrett's new speech therapist today. We went over the program and Garrett's goals. We talked about using pictures of people and objects that Garrett knows and getting him to point. We'll see her again next week.

Garrett started ABA today!

His therapists are great!

I stuck around for the first 20 minutes or so. He was fine when we arrived, but once the other kids started coming in, he freaked out. He started banging his head on the floor. They asked what I usually do to stop him, and I told them that I usually just slide my hand under his head. They just wanted to make sure that they're doing it the same way. I took some rice cakes in for his snack. He saw them on the table and instead of getting the attention of the therapist that was sitting at the table, he came across the room and tried to take my hand. I folded my arms, which he didn't like. But he did go and stand next to the table and wait for the therapist to pick up the baggie. Then he gave her eye contact and was rewarded with praise and a rice cake.

When I picked him up after the two hours, they said he did great. He slammed his head into the floor a few more times and now has rug burn on his forehead. He didn't show any warning signs that he was going to bang his head (like throwing a tantrum, or going on all fours), so they didn't have time to slide their hand under before he'd already hit the carpet once. The carpet in the playroom is not soft. Hopefully that will deter him from banging his head after a few days.

One of the therapists did some hand over hand signing with him. He didn't object, so she said that she'll keep trying and see how he does with it. They are going to write up his plan this week. I was told that he showed some interest in an insect puzzle and a shape sorter. Those are the lowest level toys that are, so he's literally starting from the beginning. It really does show his developmental levels. I say it all the time, but he's a 10 month old in a two year old's body.

We'll see how he does tomorrow.

Jumping through hoops

I feel like I have neglected this poor blog because there hasn't been much to report. Garrett has been without therapy for over two months. He is going back to a lot of his behaviors (head banging, spitting, not eating). It's been very depressing to see all of the progress we were making disappear.

But this week, we finally have some news!

We got our notification that Garrett's records had been transferred for ECHO and we were given two options for ABA therapy. I called and spoke to the one out of Suffolk, and they have a center that's local. They have openings Tuesday, Wednesday and Thursday mornings for two hours each. I told her to go ahead and sign Garrett up. We both contacted our ECHO coordinator and if we've jumped through all of the right hoops, Garrett should be starting ABA on Tuesday.

We also got a visit from the early intervention coordinator this week. I signed all of the paperwork and they'll be writing up a new IFSP for him. Our coordinator will be coming back this Wednesday with some other forms for me to sign, and Garrett will begin Speech and OT before the end of the month.

Yesterday was a HARD day.

Tuesday night, Garrett was having tummy troubles again and there was nothing I could do to comfort him. He threw up three times and was in so much pain that he couldn't sleep. He was trying but he would just wake up screaming a few minutes later. It was horrible. I finally brought him into bed with me to see if I could do something to make him feel better. I tried to rub his back, but he didn't want to be touched. He took my hand, placed it on his tummy, and then rolled over. Neither of us slept that night.

He was finally starting to drift off around 6:30, when Bronson came in and woke him up. We all got up and changed clothes. I fixed breakfast. Garrett only ate two bites of his toast. He started falling asleep on the stairs around 10, so I carried him up and put him in his crib. I usually change him back into his pajamas before he takes a nap, I made the mistake of not doing that.

When he woke up before 2, I went into his room and saw poop on the wall.

Yeah. Yesterday SUCKED.

After two baths, more laundry and disinfecting everything upstairs, I came down to feed a now starving Garrett. I made him a protein shake (hemp milk, rice protein, strawberries and bananas) and that was sufficient to fill his little tummy.

He went to bed at 7 pm and woke up at 8 this morning. Today is already a million times better than yesterday.

New routines

With Garrett's communication difficulties, even something as simple as a drink of water requires a routine. It has taken almost the entire six weeks that we've been here to get this down. He still has trouble with it sometimes, but if I give him a cue, he knows what he is supposed to do next.

I leave a cup on the edge of the bar by the fridge where Garrett can see it. If he wants a drink, he guides me to it and I'm hoping he will eventually point to it. I pick up the cup and hand it to him, giving him another opportunity to communicate with me.



Garrett hands me the cup and I fill it with a half inch of water.





When he is done drinking, he has to hand it back to me to indicate that he wants more. If he doesn't hand it back to me, he's done. It has taken a LONG time to get this part down. Even now, sometimes he'll forget and he'll throw the cup down and scream at me. If he does that, I'll wait until he picks it up again (which has only happened once), or he guides my hand down to pick it up, and we start over again.




Note: Did anyone notice all the eye contact in these photos? Crazy! Because he's looking at the camera. He's not looking at me.

He's been approved!

We got our referral authorizations this week for Garrett's therapy. He's authorized to receive services for Speech and OT. And it's at least twice what he was getting through Montgomery County.

We're still waiting on approval for ABA and that will hopefully come through next week.

Trampoline!

I finally got around to setting up the trampoline that Garrett got for Christmas. We decided not to spend the extra money for one with handles because we thought he would hurt himself. But right now, I'm almost wishing that this one had a handle. Garrett doesn't have the core strength to stay balanced while he jumps. He's all over the place. I can stand there and hold his hands, but then he wants me to pull him and make him jump. I want him to do it on his own, so this might take a little while to get used to.