We had our annual ARD for Joseph and John to discuss their school and therapy needs.
Joseph’s therapy needs
We will be continuing speech therapy at school one time a week. We will continue working on the letters S/SH, J, & K. I feel there is another letter, but honestly, I am drawing a blank on what it is. Mostly for Joseph, it is enunciation that we are working on.
John’s therapy and school needs
John will start having speech therapy twice a week at school. Once a week will be when he is pulled from class to work with the speech therapist. The other time will be in a classroom setting. The speech therapist will come in and work with him while in class. So between the 2 times a week he receives at an outpatient clinic and the 2 times a week at school, he will increase to 4 times a week instead of the 3 times he was receiving previously. So now total therapy sessions will be 7 therapy sessions a week between outpatient speech, occupational, physical and in school speech therapy.
We will also be getting an evaluation for occupational therapy by the end of March while in school too. Since the diagnosis of SPD (sensory processing disorder), and the school has realized he does need additional help with fine motor skills while in school too. So this will help him in school to receive the additional help besides his outpatient therapy. Once the evaluation is done, I will update with the information.
Next school year John will be attending Pre-k full day. However, he will be in Pre-k in the morning (regular education) and PPCD (special education) in the afternoon. The teachers agree that he has come a long way from when he first started. However, at the same time, he is still lacking and not progressing as much as they thought he would in just half a day of regular education. So in the afternoon, he will be with the other children that are in a regular classroom in the morning but still need that extra assistance in the afternoon. They will be very similar to him, very bright; however, needing more one on one or a smaller classroom to help with their skills they need to improve on. This will help him in so many different ways. He will be in a classroom with fewer children (roughly 8-10) with three teachers & teacher aides. Also, he will get to interact more with kids that are similar to him (verbal, motor, maybe even medical). This will give him a bit more boost in his confidence of seeing some kids do need extra help, like him, and more one on one options.
As a parent, of course, you never want to hear that there is something wrong with your child, medically or whatever. It is something I have struggled with especially when it comes to that line of he is different and don’t push him, or he is more than capable so you need to push him. I have accepted that John has a trach, g-button, and other things. It did take me some time to get used to it. I originally tried to push to have it all removed as soon as the original plan of telling me when he first got them. Now, it is more just a wait until he grows and gets stronger. I will still ask what steps we need to do and work on those goals. However, I know when he needs to stop and to back off of something. You learn as a parent when you see your child what they need and when they need it. However, on the other side, you also want to push your child to achieve their greatest potential. Please don’t get me wrong in saying that I don’t think John will never have his g-button, trach, or all the therapy. I would, of course, love to see that day, but at the same time, I realize it isn’t as soon as I would like. We have come over A LOT of obstacles from when John was first born. John now does not rely on his g-button for feeds. When we first got it, he was connected 21 out of 24 hours a day. October 2017 marked 1 year since the last time we had to really feed him via his g-button. He now eats and takes most meds (minus one for reflux per dr order that is to be by g-button) by mouth. John went from needing a ventilator to no longer needing it on a regular basis since June 2017. These are great things to work towards the goal of one day the trach and g-button being removed. Yet at the same time, we still have to work on his strength of his lungs to not rely on his trach or oxygen while he is sleeping. We never thought he would speak, sit up, walk, crawl, etc. He has proven them wrong. When he masters one we praise it and jump for joy that he did prove people wrong. Then we move on to the next we need to work on.
We do have trach/vent clinic on Monday. So I will have more updates when we see the majority of his primary specialists.
We did get our family photos back. I will share one for now.