I appreciate you and your writing so much. I wanted to specifically respond to this post because I wanted to let you know that it helped me, know what I need to do for my child. My child is speaking but she does have the dual diagnosis of autism and ADHD probably like her mama and right now we're trying to figure out if she may have I'll a seizure disorder. I recently put a file folder together with all of the paperwork and notes, but I took a screenshot of what you are doing for Aiden with the binder and I think that may be my next step. There is so much more I want to say but, I haven't figured out how to get everything out of my head into written words. But either way I just wanted to say thank you and your writing means so much to me ♥️
You are doing exactly what you need to be doing right now.
First and foremost you are taking care of you and your boys.
We do not need to know all the details of any of your lives--protecting your boys dignity is paramount.
One thing that really spoke to me as a school nurse was when you mentioned his health being a source of your one son's regression with his iPad use. "Because if you don’t feel well, how can you do well?”
School nurses look to that as a guide in sending children home.
Taking off my nurse's cap and putting on my mama bear hat.
We kept two separate binders.
1. Medical Binder
A general one page info sheet that listed all of my daughter's co-occurring diagnoses, allergies, hospitalizations, major illnesses, surgeries--this was placed before all the doctor tabs.
A copy of her guardianship paperwork--before the doctor tabs
Lined loose leaf paper: I jot down notes at each doctor's appointment, including her vital signs and any questions asked, responses and comments made. In between appointments--if I thought of something, or had a question or concern, I made note of it so I would remember to ask it at the next appointment.
Tabs for primary care (vaccinations under report tab), and each specialist
within each doctor's tab we had:
Tab for copies of labwork
Tab for reports
2. Educational Binder: tabs for reports, assessments, IEPs
3. Adult service Binder: A copy of her guardianship paperwork before tabs for reports, assessments, Life Plans
Like you, I used sheet protectors for anything I did not want to hole punch.
I appreciate your willingness to share whatever you feel led to share. As always, what you decide to keep private will be treated with utmost respect. I learn from you in different ways than some of the community in that my daughter has very little need of support. I look to you for inspiration more than anything else. I do know that you struggle. But I also know that you are strong. And I need to see that. Knowing you struggle but that you don't give up. It's extremely powerful. I have so much respect. Thanks for doing what you do.
Appreciate the share and info as always. I continue to find that the most useful resources and the interventions that tend to stick come from other parents of children with profiles similar to my son. We will soon be doing a developmental optometry assessment and likely vision therapy from there. I recently heard about another resource...are you familiar with NACD and Bob Doman? I think I first heard about him in Vaish's podcast and a local parent recently shared that NACD has been the most impactful intervention they have done as of yet.
"And while I feel some hope, I also feel regret, anger, even, for the time we lost. For the years I didn’t know what I know now. For being lost in systems designed to confuse and break us."
I appreciate you and your writing so much. I wanted to specifically respond to this post because I wanted to let you know that it helped me, know what I need to do for my child. My child is speaking but she does have the dual diagnosis of autism and ADHD probably like her mama and right now we're trying to figure out if she may have I'll a seizure disorder. I recently put a file folder together with all of the paperwork and notes, but I took a screenshot of what you are doing for Aiden with the binder and I think that may be my next step. There is so much more I want to say but, I haven't figured out how to get everything out of my head into written words. But either way I just wanted to say thank you and your writing means so much to me ♥️
You are doing exactly what you need to be doing right now.
First and foremost you are taking care of you and your boys.
We do not need to know all the details of any of your lives--protecting your boys dignity is paramount.
One thing that really spoke to me as a school nurse was when you mentioned his health being a source of your one son's regression with his iPad use. "Because if you don’t feel well, how can you do well?”
School nurses look to that as a guide in sending children home.
Taking off my nurse's cap and putting on my mama bear hat.
We kept two separate binders.
1. Medical Binder
A general one page info sheet that listed all of my daughter's co-occurring diagnoses, allergies, hospitalizations, major illnesses, surgeries--this was placed before all the doctor tabs.
A copy of her guardianship paperwork--before the doctor tabs
Lined loose leaf paper: I jot down notes at each doctor's appointment, including her vital signs and any questions asked, responses and comments made. In between appointments--if I thought of something, or had a question or concern, I made note of it so I would remember to ask it at the next appointment.
Tabs for primary care (vaccinations under report tab), and each specialist
within each doctor's tab we had:
Tab for copies of labwork
Tab for reports
2. Educational Binder: tabs for reports, assessments, IEPs
3. Adult service Binder: A copy of her guardianship paperwork before tabs for reports, assessments, Life Plans
Like you, I used sheet protectors for anything I did not want to hole punch.
I appreciate your willingness to share whatever you feel led to share. As always, what you decide to keep private will be treated with utmost respect. I learn from you in different ways than some of the community in that my daughter has very little need of support. I look to you for inspiration more than anything else. I do know that you struggle. But I also know that you are strong. And I need to see that. Knowing you struggle but that you don't give up. It's extremely powerful. I have so much respect. Thanks for doing what you do.
Sending love, hugs and lots of positive energy
Appreciate the share and info as always. I continue to find that the most useful resources and the interventions that tend to stick come from other parents of children with profiles similar to my son. We will soon be doing a developmental optometry assessment and likely vision therapy from there. I recently heard about another resource...are you familiar with NACD and Bob Doman? I think I first heard about him in Vaish's podcast and a local parent recently shared that NACD has been the most impactful intervention they have done as of yet.
"And while I feel some hope, I also feel regret, anger, even, for the time we lost. For the years I didn’t know what I know now. For being lost in systems designed to confuse and break us."
I feel this! You're not alone