Last month seemed to go by fast for us. I made it through Mother's Day. It just happened to land on Naethyn's EDD for the second time. Urgh. We kept it low-key and just went about our day as we usually do on a Sunday. Both boys have completed their online programs and we are all on summer break! I now have a 7th grader and a 5th grader. That seems so crazy to me, but it's true. D was inducted to NJHS and we made the 1 hour and 15 minute drive to and fro to watch him walk across a stage and accept his pin and certificate. He was probably the youngest and smallest up there on stage, but he doesn't let it bother him. He has his mandatory hours and can start now, so we might have him go to an event in July and thank blood donors again. We want him to choose what he wants to do and we'll drive.
For the first time in five years, we are taking a break from all things therapy during the summer months (and maybe longer). T needs the break and so do I! We may have hit a plateau or I'm just feeling like what's the point? The providers seem to get lazy or it's that I make things too comfy and too easy for them. Lately, I feel like I am doing everything and I am starting to question why I have someone in my home for therapy. They don't come with anything planned, just a tablet T isn't allowed to touch (?), and they are on their phone intermittently during the sessions. I could understand checking at the beginning of a session or towards the end to see if a client has cancelled, but answering texts in between rounds of playing a game with my child and not staying focused yourself is kind of a deal breaker for me. The other thing that is driving me batty is "Mom." I understand that it could be an occupational habit to call a parent Mom or Dad, but I prefer that someone who isn't my child to go ahead and use my first name. The fact that I've had to correct this person on multiple occasions and still can't make the adjustment, is just rude. I mean, I don't call her "speech provider" or refer to her as "SLP."
The bigger issue here is that there is no evaluation system in place for parents/caregivers to leave feedback or rate their providers which would maybe impact provider pay or agency referral. If a parent/caregiver could leave a brief evaluation for each provider and agency at the time when progress reports are due, that would help ensure more quality of services and you'd think would have more of an impact on the success of these goals for individuals needing them. The agencies and providers know that there is a high demand for services, so they know that they can fill the slot should a family decide to cancel or abruptly leave. The turnover is high because there really isn't any accountability. Do I really have to call an agency and have them tell a provider to not be on their cell phone or to show up to my home with a planned speech activity? I mean, if the agency would rather just pay me, I'm all in! I think people have differing ideas of what "quality" means.
Another thing on my mind, bigger than the lack and quality of services, is guardianship. Earlier in the Spring, I went to a conference dealing with Family Trusts vs. Special Needs Trusts. Oh my goodness, it was so depressing. I sort of laughed to myself when I realized how sad this topic is as I glanced at the huge breakfast spread they had out for us. Trying to lighten the mood with croissants and fresh fruit and all the Beneficial Beans coffee you can drink. So, I'm dumb and I don't know why I didn't put this together. Depending on what we do and how we implement things, not only will T need my legal permission to marry, but he'll never be able to own property. He'll pay rent for the rest of his life. He will be able to both work and collect an SSI check, but in the end and with a Special Needs Trust, we'll be forced to do charitable giving because T won't be able to inherit our home. He can have his ABLE account (something approved, but not yet up and running in AZ). Does this make me rethink EVERYTHING?! If we do a Family Trust, all of the future financial responsibility will fall on D's shoulders. There is risk with that option. I have to hope that D will marry someone honest because if he should ever get divorced, his ex will be entitled to half of his assets, money we set aside for T. The presenters kept saying that we needed to think of things in terms of "beyond the grave." I wanted to throw up, scream, or both!
Believe me, I am staying in the moment and appreciating each and every day. However, my husband and I are forced to think many years down the road because there are serious things that need to be in place that are going to impact our kids and later adult lives. This stuff is completely daunting and overwhelming. It's sad because I feel like I'm forced to sell my kid short of the potential that has not yet been realized in order to have continued Medicaid and a future SSI check and yet, I believe that he's on the path to maybe not be dependent of those things. A friend on this similar journey whose son is a bit older than mine reminded me that I don't have a crystal ball. I can't guarantee that T won't have future medical issues and having that coverage is peace of mind. He doesn't have seizures, but that doesn't mean they couldn't start when he's older. All in all, I'm just a bit depressed about this. How am I going to explain to T one day why he can't do or have such and such? Urgh. I'm so thankful that my local grocery store had a great deal on my favorite silver bullet drink because this gal sure did stock up for the summer. I needs it to unwind.
Thinking of you while you are dealing with all of this. So hard to make decisions and plan for a future that is practically impossible to plan for. This sort of thing is suppose to make a person feel better about the future, not more anxious. So sorry it is making you so apprehensive and stressed. Hope you can do some relaxing and unwinding this summer.
Love and Hugs
I cant even begin to imagine how hard all that is to face. Please know I am always here to chat if need be! So many hugs to you dear friend!
Sorry to hear about all the stress and the anxiety of the unpredictable future. I can't even imagine the stress level. I hope you can find peace of mind this summer.
March of Dimes fights for the health of all moms and babies. We're advocating for policies to protect them. We're working to radically improve the health care they receive. We're pioneering research to find solutions. We're empowering families with the knowledge and tools to have healthier pregnancies. By uniting communities, we're building a brighter future for us all.
Privacy, Terms, and Notices
© Privacy, terms and notices