It’s been a few days since I’ve written much and there’s a few reasons for that. Firstly, the podcast is gaining traction and it’s requiring a good bit of my time. Secondly, I’m having a hard time focusing on writing. Thirdly, and this ties in with difficulties in focusing, I’m struggling in general.
With the holidays approaching, I’m beginning to face the reality that my family has been torn apart. It’s not like I didn’t already know that but the holidays are really important to me. It’s like, no matter what else is going on around me, I had my wife and kids. At the end of the day, that’s all that mattered. The holidays are all about family and now mine is broken.
It’s going to be hard for me to cope but it’s going to be even harder on the kids because they’re going to be forced to bounce around in order to spend time with both their parents. There’s a reason we kept the holidays low key and limited travel. They’re already struggling with everything going on, and the holidays make it more real, if that makes sense.
As it stands, and for reasons outside of my control, holidays will forever be different. I know that in time, we will all adjust but we’re not there yet.
Moving on……
Parent teacher conferences took place last night and I’m incredibly proud to share that Emmett is doing really well. Academically, he couldn’t be doing better and while he struggles emotionally at home, for the most part, he’s doing great while in school.
I’m so proud to also share that Elliott is doing very well academically. His grades are solid and that’s awesome. The problem, however, is that he’s very much struggling emotionally. All of his teachers are extremely concerned about him because he appears to be massively depressed.
He talks to them and it’s very clear that he’s constantly worried. He sorta tries to disappear at school because he doesn’t want to be there and the reason for that is that he can’t stop thinking about his mom leaving. He’s overwhelmed by his thoughts and he can’t shut them down. It’s eating him alive, interfering with his sleep, and causing him to retreat into himself.
I’m aware of these struggles but hearing it from his teachers, makes it even more heartbreaking for me.
Elliott’s in therapy and on medication to help with these issues but clearly, they aren’t helping enough. I need to do something to help him because as I mentioned above, the holidays are only going to make things worse.
Divorce is hard on any kid but kids with Autism are so incredibly sensitive and they can become hyper-focused on things. They don’t handle change well and can struggle with their emotions on a good day.
Where do all you people live who have access to all these services? Because there is a large discrepancy from city to city, county to county, and state to state. And yet you all assume Rob is deliberately keeping his kids dependent? Personally, I think several of you are jerks if you can’t give constructive ideas without being personally hateful.
I thought Helen gave very constructive ideas and was summarily dismissed. Which was bound to bother some people. Engaging people in a conversation would help further understanding. He chose to ignore everything in her post instead.
Todd, I didn’t dismiss Helen. How could you possibly know if I ignored something? I don’t agree with her because I know my life better than she does and I know the reasons I do or don’t do things. There are things I can’t talk about which is why I didn’t respond to her further. Secondly, I wasn’t avoiding Helen, I was avoiding the trolls. In case you haven’t noticed, there are trolls among us and they do their best to pick apart everything I do.
I’m human and there are times where I just don’t care to engage. I’m allowed to do that. It’s my blog, my story.
Just so we’re on the same page, anyone who comes here to tell me what I’m doing wrong and pretends to know how it “really works” doesn’t get my attention. If that person doesn’t recognize that the things available to them, may not be available to everyone else. It’s so important when dealing with this community that we not make assumptions. Everyone’s situation is different and services aren’t available everywhere. Sometimes there’s more to the story that just can’t be shared or simply isn’t understood.
I would like to challenge Rob to show Helen’s post to the kid’s family therapist and see what she has to say about it. She has been seeing them since Gavin was little so if anyone should know their family dynamic, it’s her.
Services vary from place to place. There are places where parents can’t even grt a diagnosis for their kids. Funding is a huge issue and where I live, there is a shortage of both funding and services.
There are other considerations as well when you involve the state and they’re not always good.
Could I be doing better? Absolutely. Am I doing the best I can? Yes I am.
Thanks Becky. It’s so important that we remember that every situation is unique and everyone’s fily is different. ☺
I am going to jump in because I am of two minds here. Where I live, we have an amazing assortment of services for those with developmental disabilities. So I know there is a variety of things that all of your children could be doing. And most are covered either by insurance or application for wavers. Or, like here, by some sort of system like brokerages. That being said, as a parent of a child with a developemedev disability, figuring out all the steps to get that aid can take a year +. As a provider of skills training (the person who would take a DD individual out and teach them to do something like shop) and community support I know that the years between 16 and about 22 are what we find as the black hole. The folks fall off the school grid and don’t have support services set up because nobody is really good at knowing how when why and the parents are left in the lurch. Thier hands have been held by the schools for years then they get the boot and have nothing until they stumble upon the right answer. It’s an issue in the community and rather than playing the blame game, let’s actually brainstorm some ideas of hoeto fix it for EVERYONE.
My advice, find a Dr who specializes in Adults with DD. They will have contacts with other DD programs that will be the right fit for your eldest. Then you will be set up for the other two.
Thank you Megan. I started to respond to your comment and it evolved into a new post. Thank you for inspiring me. ☺
Helen you are 110% correct in everything you say. When individuals with developmental disabilities have not had the chance to experience outside opportunities and support and have always lived at home with their parents are now forced to go into a group home due to their parent becoming ill or elderly and no longer able to look after them, this is not only confusing, but traumatizing for that person because they have never known anything outside of their parents support. One of the best things you can do for your kids is to give them those opportunities.
I think there needs to be a bit of self-reflection in this. Her leaving is probably not as much of a decision that she’s made but rather a forgone conclusion. You can’t force someone in a relationship to stay with you who doesn’t want to. If the relationship wasn’t broken, she wouldn’t leave. Your anger shouldn’t be so directed at her for leaving because ultimately as being one half of the couple you play a role in all of it.
As for your kids, yes divorce is hard and yes Autism complicates things but if it wasn’t this that they would be struggling with something else. I have read your blog for years and this is the first time that I just feel overwhelmed to post. I have also worked in the field of Autism as a specialist for 20 years so I’m not some random “hater”. I don’t know your family other than reading about what you present to us but there is no doubt that things that would help your family are:
more social opportunities for your kids outside of the home
more individual time where your kids are not with each other and/or you
more responsibility for your children (i.e., chores)
more social opportunities and involvement outside of the home for yourself!
A place for Gavin to go in the day and potentially live away from home
Where I live, adults with cognitive disabilities are able to go to day program and access any number of different models of residential living in the community. There are extremely medically complex individuals who live in homes in the community that are serviced by agencies that provide support for these individuals.
So take your example of Gavin ordering some meat at the deli counter. This shouldn’t be something that at 19 years old even given his disability is so unusual. That could be his everyday norm. He could live in the community, supported by an agency where his staff take him grocery shopping (or work on other daily living skills) while focussing on teaching him independence.
You often say your kids are your life but I think that provides a bit of insight as to what could be contributing to the problem. There is a high level of codependence. It isn’t healthy to have the night off from your kids and not relish in the alone time. You need to build a life for yourself rather than a life that requires your kids to stay dependant on you to fulfill something in yourself. You can help them flourish and become independent and if you work yourselves into the position as the only one who can meet their needs then that is a massive problem. There’s no reason why both Elliot and Emmett couldn’t be working toward independence with the expectation that when they’re adults they will be living away from you.
I really wish you the best and there’s no doubt that you’re struggling, I just don’t think that it’s entirely for the reasons that you suggest.
You’re entitled to your opinion, whether I agree with it or not. I just thank you for expressing it in somewhat of a constructive manner.
This is amazing, you dismiss someone who has been in the game for 20 years, offering much of the same advice your ‘haters’ give you. Proving that you are a narcissist and will never see it, and your situation will never change. If Dr Patti isn’t also telling you these things, and she could be and you ignore them because you think you are some king of expert, she is only there for that government money. Helen you nailed so many things right on the head, I hope for the boys sake/sanity he sees something in your post that he dismisses in every other post
Why do you think that everybody but you is wrong? I get that this is your life, but when multiple people point out the same issues maybe it’s you who are wrong. Your entire life and identity has been special needs dad and husband. Now with Lizze gone you are nothing more than a special needs dad. You need to let those kids grow up and move towards independence instead of consistently retarding their forward growth with your own need to be needed. You are doing them no favors and if Dr. Pattie isn’t telling you this on the reg then she should lose her license. Helen’s assessment was so spot on and you dismissed her as being ‘entitled to her opinion’. Seriously, this type of behavior and refusal to self-reflect is why you’re single. Think about that.
I have had the opportunity to work in the field of supporting individuals with developmental disabilities for 12 years now. Helen you are 110% correct in everything you say. It’s so important to have opportunities and experiences outside the home. It’s extremely difficult to see individuals who have lived at home with a parent all of their lives and now are suddenly thrust into having to move to outside support because the parent has become ill or elderly and can no longer care for them. It’s confusing and traumatizing as the world as they have always known it is now completely turned upside down.