The roller coaster life continues. It wasn’t that there was anything bad that happened today, it was just the kind of day where insecurities were magnified. Anxiety, fear, doubt, and worry plagued me all day, just because it builds up and we all do our best to stay focused and positive on a daily basis.
The new OT team lead brought a speech therapist with her today to do Brendan’s speech assessment. I literally was speechless for a while when she said that she has NO trach experience and she didn’t even know what his speaking valve was. Really?? Did I just not wake up yet today and am I still having a nightmare about therapy? How do you even become a speech therapist without understanding how a trach works?
I have started to realize that I am putting too much faith, hope, and expectation in to early intervention services. I somehow expected professional service providers to be educated.
I need to step up my efforts with both of my boys. We have some changes that need to be made and the first is going to be a huge cutback in the amount of digital entertainment. I feel like the TV, iPad, and phones are getting out of control and I let it happen. I promised myself that I would not have the kind of kids that would always be buried in electronics and that is the path that we are on.
Trevor and I have another outing with the Mom’s group in the morning. We are going to continue to expand our social activities and try to find things that Brendan can do too before cold/flu season comes back around again.
We continue to eat dinner at the table and give Brendan food every night.
It is hard to applaud Brendan for playing with his food and then tell Trevor not to play with his food. He just wanted to scatter rice everywhere and drop more on the dog.
The good news of the day is that Brendan’s oxygen was turned down again and now he is on only 1L of flow. Bit by bit, he gets stronger.
We should have sleep study results and a new plan in the morning too.
We saw on our news about the huge dust storm that there was in Southwest Phoenix, and hope you weren’t too effected by it.
It sounds like one of those days when not getting enough sleep, and not having enough help from the therapists, and everything not getting better fast enough is again causing you to question YOURSELF, and YOU are not the problem. I feel bad that you have feelings of anxiety and fear. It is so understandable when you are getting inexperienced “help”. How frustrating it must be to know so much more yourself than the professionals you are being sent! I hope you will be able to lodge a complaint and things will improve.
On a brighter note, I hope that you will have a fun outing with your new group tomorrow, and that soon Brendan will be able to join you.
May tomorrow be a better day, with good things happening, your self-confidence getting a boost, and the knowledge that so many people love you, and are AMAZED by what you have done for your little boys. Don’t doubt that for a minute! If sometimes you need a little help from an entertainment aid, that’s okay. As parents, you will constantly be making adjustments to what works and what’s acceptable. You’re great parents, you have great kids, and you’re doing a wonderful job.
I love you all very much. If only there was a real magic wand…
Gramma xxxx
What a nightmare — Please Tiffanie if you think there is anything I can do – like maybe come spend some time reading to both boys or just Brendan or whatever let me know. (I am willing to do trach training too)……My goodness how do these people get certified or is that no longer a requirement. Whew
You are totally right to be frustrated and shocked. If that new therapist doesn’t understand Brendan’s case, then there is no reason for her to be assigned to it. You said you promised yourself you wouldn’t have digital kids. From all I have seen and heard, your kids don’t spend all day watching stuff! It is perfectly OK to give them and you a little mental break during the day. With all you are trying to do for Brendan and with Trevor’s energy, they need that downtime too, and they are both too little to just expect them to play quietly with their toys or engage in a craft without extreme supervision. We all have aspirations when we become parents, but we don’t always realize them in the day to day chaos of life. For every mistake you think is made, there are plenty of successes that you helped to facilitate. Brendan plays with food and sometimes eats it – because you work with him every day, not because some therapist comes once a week. Brendan is down to 1L of oxygen – because you give him a safe environment in which to grow strong. Trevor is a funny, curious little boy with a love of garbage trucks and sprinklers, who was not afraid of the aquarium or other little kids – because you have made him feel safe and secure enough to venture out and given him the chance to do so.
[[ ” How do you even become a speech therapist without understanding how a trach works? ” ]]
🙂 🙂 🙂 Tiffanie, Daughter, careful, your father’s *genes* are showing 🙂 🙂 🙂
Then again, you do handle it better than I do. 😉 🙂
So happy you found a mom’s group to get involved with. Sounds like a good time for you and the boys. 🙂 So sorry about the therapy woes….jeez. In an attempt to keep a positive caring attitude, I have to stop my fingers now. 🙂