Eve of the Buddy Walk

On the eve of our first buddy walk, Eli has a head cold. 😦
poor little guy! He woke up so stuffy that he couldn’t eat! His little eyes were puffy and swollen and goo-filled. I felt so bad for him so
I decided to stay home and nurse him and love on him in hopes he will feel better tomorrow. He’s not his happy self today 😦

Our OT stopped by with kinesio tape. We had discussed it before and I was excited to try it. I bet there are tons of YouTube videos on tape so I will have to scope it out.
She taped his back to help him with sitting and holding his head up more straight. The exciting thing is that he’s getting stronger every day and sitting for longer and longer every day. 🙂 so proud of him!
The bad news is that our OT has decided to resign and go into private therapy for the same reason many teachers do: too much paper work and not enough focus on the patient.
I nearly began to cry. She loves Eli and we love her. She works him and loves on him and we’ve made so much progress together.
She gave us some great advice on moving forward. But we are going to have to fight. I’m not sure how our services will pick up after our OT resigns- will they stay the same? Same number and same time? We were already told he wouldn’t get speech because he’s not delayed and PT isn’t needed at this time because he isn’t mobile yet.
Looks like I will need to put on my gloves and hop in the ring. I guess I will contact TCH after the first of the year about private services.
My child is worth it, he is smart, and he is going to continue to surprise the world!

It’s so frustrating that ECI limits what is possible. They don’t want to give services, they don’t want to push for your child and our therapist is a rare and wonderful advocate for Eli.
I’m sad to lose her and worried about the future but I know it will all work out in the end.
Eli is doing so well and we are so excited about the next 6 months.
Enjoying this stunning day and some TLC with my little man. I will definitely update after the walk tomorrow! Have an awesome weekend!


8 Replies to “Eve of the Buddy Walk”

  1. Is this OT through your early intervention with your school district? If so, Eli is entitled to having those services, whether that OT resigned or not. You probably will have to stay on top of them in order to get them send someone new out, but you are right–your son is smart and he is worth it!

    I am really enjoying watching him grow through your blog. He is too cute for words!

    1. Thanks girl! Yeah the services are through the county and my OT said that they are required to continue services the exact same as before. I texted my coordinator about it but never heard back from her. 😦
      It’s definitely going to be a battle.

  2. My experience with ECI in Texas was very poor. I did learn a few things, though. Like parents are the ones who get to say how many times a month the therapists come. I know that sounds far out, but I remember them specifically telling me that – it’s the law. Now, when I asked them to come more often, they hemmed and hawed, told me they couldn’t get approval, that our county was SOOOOO heavy with caseload that if they came more for my son with Downs who was SOOO “high functioning”, it would mean another little baby somewhere who REALLY needed services wouldn’t get services. They totally have a script for talking moms out of more services. I can’t remember for sure, but it seems to me if your pediatrician writes a script for speech therapy, they HAVE to provide it, even if he is not delayed. The diagnosis of Down syndrome will really help because speech and language is ALWAYS affected with kids with DS.

    For my son, ECI told me he only needed OT once a month until he could walk. Can you imagine? I fell for it. And then when he could walk, they said he didn’t need OT any more, just PT. And the PT came once a month but just followed him around outside and kept telling me that walking the back yard was PERFECT therapy for him and we really didn’t need her.

    They wouldn’t provide speech therapy until he was 2-1/2. I never exerted my rights, I didn’t want people who didn’t want to be there coming to work with him because they had to, so I accepted the once a month routine.

    If I had to do it all over again, I would have skipped ECI and gone straight to private therapies. His private physical therapist has done amazing things with Noah ONCE A WEEK and she adores him.

    If you have insurance, you may want to consider this option. I found private therapy to be so much better than ECI. And I never have to question whether what the private therapists are telling me is truly in Noah’s best interest versus theirs.

    I don’t know whether speech therapy at an earlier age would have helped Noah – he was a very quite little boy until he turned 4 or so. The ECI therapists did get me started with sign langauge and that has been an amazing tool for Noah to have.

    Not sure if you were asking for advice, but I wanted you to have my experience. I hear ECI services in Texas vary greatly from county to county – hope yours is better than mine!


    1. Alyson, that sounds absolutely awful!! I’m so sorry that was your experience! We have had to fight a bit more for things for ECI services, but nothing like that.
      In fact, our coordinator finally put in for a speech eval, so we will have a private one and one through ECI.
      I have a feeling we will have to fight for our new OT services, but if it doesn’t go the way we would like, we can always go to private. Since he was evlaulated already, we will have no issue getting put on the rotation.

      How often do you have private services?

      1. speech therapy once a week; physical therapy (hippotherapy) once a week. Noah doesn’t seem to have much in the way of sensory issues, so no OT. I also work with Noah about four days a week for about a 30-minute one-on-one session on speech drills and language activities as well as typical preschool concepts.

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