Parenting deficits & learning disabilities

[SFisher]

My son has accrued a list of deficits and learning disabilities over the last year. He’s still the same kid we’ve always loved. Identifying these things has been a huge step in the right direction for him. He’s supported, he’s improving, he’s enjoying school for the first time ever, he’s owning his strengths and weaknesses and he is committing to the work/therapy to improve weaknesses. Any lingering fears about labeling him are long gone.

But, here’s the thing I’m left with as a parent: the system totally failed him. The school, the pediatrician. The school is supporting him better… but that’s only after we pushed hard against them. His support is coming mostly privately. The pediatrician seemed useless and lacking knowledge in our needs, even misguided and quick to jump to conclusions so I just sought out experts without a doctors referral. He does have a classroom teacher and gifted coordinator who are looking out for him within the school. That came from us advocating and building relationships. He has a 504 that has a bunch of accommodations that help him, but doesn’t actually identify his true deficits/disabilities and instead attaches the accommodations to a diagnosis he doesn’t actually have. I feel like, without us as parents, he would be drowning in misunderstanding. Why is there not a better, more understanding, more accurate system in place to identify and support kids who are atypical?

And… my trust in systems for the greater good is totally broken. My strategy has been to read, read, read… then find experts who align with what I’ve read and pay for them to assess him, tell the school best practices, and provide therapy. That is how we have gotten anywhere. I’m quite privileged with time money and education to have the ability to do this for him, but it’s also a ridiculous expectation that we shouldn’t expect from parents. There are many good parents who just wouldn’t be able to expend that type of effort.

Anyhow… anyone relate? Feeling good about the newfound understanding of my child’s complexities combined with a realization that all these systems missed what was really happening. Major distrust and feeling like the “village” around my child must be constantly vetted… hard to get my head around. 

[PeterPan]

You're going through normal feelings of grief and the steps include blameshifting and asking why. You've gotten another diagnosis and that's hard. Eventually you're going to come to the other side and figure out what you can do and develop some understanding of *why* the system can't be perfect. This unfairness happens everywhere, sigh, and it's just reality that we can't make it perfect for everyone. 

You WILL be able to improve his access to services with your new knowledge/understanding. You may decide at some point the 504 isn't appropriate and he actually needs specialized services. The school is going to do the minimum amount necessary to help him "access his education." After that, your problem. There are ways for people who don't have resources to dispute and get help, but it's time consuming and stressful. There are even pro bono lawyers for people who need assistance to fight the system. The first question that lawyer will always ask is *what you're trying to make happen.*

So grieve away. I agree, you wish it could be as easy as trust and the system works. And it does sometimes and sometimes people need more support. No one knows everything, so I try not to confuse results and intention. Results are limited by knowledge, the system they're working in, etc. Intention is their heart and what they wish they could do. 

[kbutton]

I can identify with every word, and then add in that trained interventions specialists even missed stuff. It’s nuts. Part of it is the giftedness—the psychologist that tests my kids still thinks my older one has LDs that he just compensates for that can’t be teased out because of such good compensation. The younger one does have LDs that can be detected, but he presents as largely remediated. There is familial precedence for more frank dyslexia/LD. 

[prairiewindmomma]

On 1/12/2024 at 8:43 AM, PeterPan said:

You're going through normal feelings of grief and the steps include blameshifting and asking why. You've gotten another diagnosis and that's hard. Eventually you're going to come to the other side and figure out what you can do and develop some understanding of *why* the system can't be perfect. This unfairness happens everywhere, sigh, and it's just reality that we can't make it perfect for everyone. 

You WILL be able to improve his access to services with your new knowledge/understanding. You may decide at some point the 504 isn't appropriate and he actually needs specialized services. The school is going to do the minimum amount necessary to help him "access his education." After that, your problem. There are ways for people who don't have resources to dispute and get help, but it's time consuming and stressful. There are even pro bono lawyers for people who need assistance to fight the system. The first question that lawyer will always ask is *what you're trying to make happen.*

So grieve away. I agree, you wish it could be as easy as trust and the system works. And it does sometimes and sometimes people need more support. No one knows everything, so I try not to confuse results and intention. Results are limited by knowledge, the system they're working in, etc. Intention is their heart and what they wish they could do. 

This, and don't be surprised when anger bubbles up at some point in your grieving journey also.