I thought it might be interesting and helpful to open up the floor to all of you. Does anyone have any questions about me or the rest of the Lost and Tired family?
I’ll be happy to answer any questions that I can. My goal is to help people to better understand what living with #Autism can be like for a family.
If you want to ask me a question or have maybe been curious about something like how we manage, please, ask away. 🙂
Maybe there is something that could help your situation… I’m happy to share.
**Thanks for reading**
-Lost and Tired
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Posted from WordPress for Android so please forgive any typos as auto-correct and I don’t see eye to eye. 🙂
I have a hard time getting my son Colton interested in doing new things outside of his comfort zone (video games). I was wondering if you have the same struggle and if you have found anything that works for you and your family? Also fantasy vs reality is a big thing around here, any ideas??
SarahBolier that’s a really good question and one that we have dealt with as well. It’s difficult to get our kids to venture away from their comfort zone in general.
We’ve simply tried to expose them to new things. Sometimes it works and other ti
I have a couple questions…feel free not to answer anything if it's too much. First, I'd love some tips handle toilet training? My son is almost 4 and has no interest most of the time… Reading about your youngest is very similar to my sons behaviors. Secondly, how do balance a relationship with your wife? My husband has many health issues, and is generally unable to provide care for our son, I end up resentful sometimes that I relate more to single parents than I do married ones.
Amy, those are all really good questions.
I understand what you mean by relating to single parents. My wife is considered disabled by her doctors and so she is quite limited in what she can do. I have struggled with feelings of resentment that have spurned from being completely and utterly overwhelmed. I get frustrated at times and even feel like a single parent at times as well.
Despite everything, Lizze and I have really strong marriage but it takes work. We have learned to make time for each other. Sometimes we grab some take out and hang out watching Netflix after the kids go to bed.
The most frustrating part for me is when what’s best for the boys and what’s best for my wife are conflicting. It often feels like I have to choose and I don’t like that feeling.
As far a potty training goes, we have used various ways to make using the potty more attractive for the boys when they were little.
Emmett was the most challenging and we had to make it as fun for him as possible. We would let him pick a sucker every time he would sit on the potty. We had to find his currency. In other words, we had to find something he wanted more than he didn’t want to use the potty. Persistence and consistency was key to our success. We also were careful not to push him to hard as well.
That worked for us but your mileage may very.
Back to the whole marriage thing for a second. My wife and have began having date nights last year. We never have money so it was always simple. We would find a series on Netflix that we both were interested in and watch the show together until we finished the entire series. Maybe not fun for some but it works for us.
I still miss things that used to be but special needs parenting changes a person. We have just learned to evolve our marriage along the way..
I hope this answers your questions. 🙂
I tried writing to Ty Pennington 3 times about getting you and your family on extreme home makeover…..it didn’t work…..I’m sorry. 🙁
Thank you so very much for the effort. 🙂 I appreciate it..
Have any of your boys ever received ABA therapy? If so, what was that like? If not, why not?
Jay, that\’s a good question. I don\’t know that we have ever used ABA, at least not in the sense that we have a specific therapist that does ABA specific therapies. I have nothing against ABA, our situation is such that much of the therapy is more like teaching real life things. I like to do a lot of hands on type things with the boys.
As far as modifying unwanted behavior, we have sorta taken the \”whatever works\” approach.
The main issues we have with behavior, revolves around Gavin and Emmett.
Gavin has never responded to ABA and so we have really had to think outside the box with him. As far as Emmett goes, most of his struggles seem to center around communication.
To be honest, I don\’t know how much ABA we have employed with him either. I know that we probably do use it on occasion, but it\’s more just part of the mixed bag of things we try to adjust behavior.
Does that answer your question? I don\’t think I answered that very well.
Let me say this. We are not set on any one type of therapy for our boys. Each of them is unique and so we have basically had to build custom behavior plans for each of them.
Have you ever thought about trying ABA with them again? I know Gavin has a lot of issues and things he is struggling with, but at least with the other two, ABA (at least through the program I work with) is successful with communication type issues. Or is Emmett seeing a SLP?
Not really but we\’re always open to trying new things that could benefit our boys. Sometimes that means revisiting things from the past 🙂
How do the boys react when the others are being diagnosed with something, or do you not really go into the specifics with them? Like you've said, the younger two get scared when Gavin has a melt down, but there was also a video of Emmett screaming and the other two seamed oblivious. I guess in a sence, how do they react to eachother's autism?
We never really go into much detail with the boys about the others diagnosis.
If the need presents itself, we are pretty careful with what we say. We say things like Gavin has a new challenge or he has a hard time doing a certain things.
Elliott tends to want much more detail but we try to keep everything to a developmentally appropriate level.
Does that answer your question? If not let me know 🙂
Do you have any help at home?
Lizze and I are mostly on our own. Family helps out with small breaks here and there but all the day to day stuff falls on us. Lizze helps out as much as she physically can but much of the responsibilities fall on my shoulders.
On that note, I have to say that I have no idea how single parents do this on their own. I have nothing but respect and admiration for those that do this on their own.
I work with children on the spectrum doing in-home therapy, here in Wisconsin. I was wondering if you guys (Ohio, that is) has any sort of program like that? I know I'm making a big assumption here, but I can't help but think having someone else in the house, like a line therapist, even for a few hours a day might help YOU out a little bit with all that stress and having to watch them all the time? On top of helping your children and some of their behaviors?
Just one of those questions i've been meaning to ask you for quite awhile now 🙂
Right now there are funding issues in Ohio. We used to have waivers but the funding has since gone away. It might be our particular location, I\’m not sure. The thing that really gets in the way is all the actual medical emergencies that come up. We literally bounce from one to another to another.
For example: we had Gavin to the Cleveland Clinic for a CDD evaluation. During that appointment, it was discovered that he has lost his lower reflexes. We had to then shift gears. 3 days later, we found out that he has no immune system, which had to take priority. At the same time, Emmett was diagnosed with PFAPA (a fever disorder) and subsequently had to have surgery. Most recently, it\’s been seizures, anxiety and now Dysautonomia. It seems to really be all the other things that weight, at least me down.
What we need is to have someone hold a great big net over top of our lives and filter out as much of the cap as possible. 🙂
Honestly, that was a good question. We have never had official respite. Family helps out on occasion. Help with the day to day stuff could be quite beneficial. 🙂
I was led to your blog by the one Amy Wink Krebs writes. I found HER blog by a story on HLN. I have since read all postings in both (in your case literally all day yesterday), and feel slightly like a vouyer for having done so. First off, I admire your love for your children and respect the fact that you are so proactive and involved in their care. You’re not content to be a victim of circumstance, and I can totally get behind that. I have three amazing neurotypical children, one of whom was infinitely more of a high needs child than his siblings. I actually relate a lot with some of the less debilitating symptoms that your 3 boys and her Jonah go through. I can’t imagine living your life for 10 hours, much less 10 years. That having been said (and I don’t ask this with any level of criticism, please believe me and please PLEASE nobody jump up my ass over it) why did you make the decision to not place Gavin in a residential care facility when ‘monkey see, monkey do’ became such an issue for Elliot and Emmett? Again, I don’t presume to try to tell you how to raise your kids. Maybe you are a better, more tolerant & accepting parent than I am, my single ‘difficult ‘child nearly drove me to drink. I’m not pandering by any means, just being brutally honest. However, you DID say ask anything! I’m not being flippant or disrespectful, merely attempting to lighten the tone. Of course you love all your children, I can’t imagine having to make the decision to send away one child from the nest to benefit the other two. I’m trying to put myself in your shoes, alas! they are too big to fill.
No offense taken. That\’s a really good question that many of us will face at some point.
The truth is that we have come very, very close to residential treatment in the past. We had a facility picked out and the funding lined up. Then before we could pull the trigger, his behavior dramatically improved.
We really struggled with deciding to send him to a residential facility. However, once the other kids were born, we had to worry about them and their safety…
Sometimes it comes down to preserving the health of the healthy. Doing the right thing sometimes involves making heartbreakingly difficult decisions.
At this point, Gavin is not a direct physical threat to his brothers. He self injures and doesn\’t lash out at others. If that changes and he begins to put the safety of the rest of the family at risk, we will have to revisit that decision.
Thank you for the question. It was a good one 🙂
Actually I don't have any questions, but I wanted to say to you, that if you have any questions, please feel free to ask me, I have been working with a special needs lady on the autism spectrum for a little over 10 years, one on one, 24 days 7 days a week..Yes I mean I live with her, and I am the only one there, and I don't get Holidays or breaks etc, so I know what it is like to live with some one who is autistic, so if u have questions or just need to talk, please go ahead and ask…