The answer should be yes. Not "how can I get my loved one help?"

Category Archives: autism spectrum disorders

Coming Home – a letter for my son

David,

In less than 24 hours, you will be coming home. You will have completed yet another stay in a care facility.  As much as the facility would have us believe differently, there is no cure for your condition.  I explained it once to you, maybe you remember? I also told you there is no cure for the condition you were born with.

You have something called Fetal Alcohol Syndrome.  It is within a group of disorder known as Fetal Alcohol Spectrum Disorders.  Like Autism, there are wide variations in the symptoms that people with this condition have.  This is why we see so many specialists.

Why do you have this?

When your birth mom was pregnant with you, she did a lot of things that were not healthy for you, these included using drugs and alcohol.  As much as I want to say that she is evil, I can’t.  Without her, we wouldn’t have you.  There is a pathway in your brain that was damaged while you were still in your birth mom’s tummy.

So, if you can’t be cured of this, or it can’t be fixed, why are we bringing you home?  It’s simple really, you deserve the opportunity to live in the community.  Like it or not, the facility is not the same thing as a home, even though it is in a community.  Not certain that makes any sense.

For most of the last 7 years, we have fought hard to get you supported services so that you could live outside a facility.  For 9 years before that, we fought to keep you out of the facilities altogether.  Sadly, we aren’t any closer to achieving that goal.  And that is okay.  Within the state of North Dakota, which we call home, there is a belief that you can live unsupported in the community.  I don’t know if you can or not.  But, we are going to sure give it a try.

We won’t succeed if we don’t try.

Until now, every time you have been in placement, you have experienced success.  This is owed to the fact that you have staff support 24 x 7 while in care.  Which is not something we can replicate here at home.

I don’t know what comes next for us, for you.  What I do know is that your mom and I love you very much, as does the whole family.  In less than 2 years you will be an adult.  Where most young people your age are getting drivers licenses, going on dates, and finding jobs; you aren’t there yet.

We have built a great team over the last few years of people to help us through your life journey.   It is my hope and prayer that you are successful.  What will success look like for you?  Honestly, I have no idea.   And you know what?  That’s okay.

Sadly, while you come home in 24 hours.  It could be another 5, 10, or 20 years before you fully understand what any of this means.

I am okay with that. 

Like you said last Spring, “don’t give up on me.”

Love Dad.

 

Da Journey – A family VLOG about the Autism journey

I run across all kinds of advocates in my work in the Autism advocacy community. A VLOG is a Video Blog.  So we all understand what the term is.

There are a lot of phenomenal advocates, parent advocates and people who advocate for themselves.

Then there is the Mayhew family who approach advocacy unlike anything I have seen before.  Cindy and I have been friends for a while, we met in a Facebook Group for parents of kids with Autism.  She and her husband always provide sage advice through their lived experience in the Autism world.

Check out their YouTube Channel.

 

Thank you Mayhew family for speaking out for DJ.  Awesome family you have there.

To my readers, I have ordered a copy of their book, and once I receive it, will do a review and giveaway of the book.

 

 

 

Denial, Denial, Denial – Placement just fell through

Well.

We were all set to take David to a new facility on Monday.

Today, that fell through.

Evidently, we haven’t tried hard enough.  We haven’t driven enough miles.  We haven’t tried this program or that.

The psychiatrist’s recommendation isn’t enough.  We didn’t try to give up custody to the state.

The language that the psychiatrist used in her last notes about our visit was that I was trying to provoke a response in my son.

  1. No prior outpatient treatment has been tried and/org symptoms do not support the need for the intensity of services.
  2. Inpatient treatment under the direction of a physician is not required.
  3. Documentation does not demonstrate that services can improve the recipients condition or prevent further regression.

cfr denialfurther comments

I didn’t comment and try to provoke a response.  The psychiatrist told me in front of David that we would need to give up custody to the state to get him care.  I then turned and asked David if he wanted us to give him to the state or anyone else.  David stated no.  But the record from the psychiatrist doesn’t show that.  The hospitalizations that we did last month had no consequence on their decision.  The reports from the inpatient psychiatrist had no affect.

The summer programs that are mentioned are all an hours drive each way from our home.  Who pays?  We can’t afford it.  He has a history of three previous PRTF admissions.  Shouldn’t the goal be to ensure that he is properly treated, rather than to keep moving him around and discharging him?

We have 10 days to request a desk review of the case. The bed may already be gone, since I haven’t heard anything more from the facility.  I can’t reach the psychiatrist or the nurse, and am rapidly becoming disenfranchised with the whole “system of care”.

I don’t know what we could do differently. I don’t know where else to turn for help.  Sure I can give him over to care of a place in Minnesota, but as kind-hearted as they are, is that the best place for either him, or the family who offered to take him in?

I know what David is like, I don’t wish him on any one.  Yet, I love him.  He is my son.

So now what do I do?

I had to cut a meeting short today to rush home because of his behaviors.

This system of care?  Sucks.  It isn’t working.  I have a voice, how must those families, who don’t have or know that they can have a voice, feel?

Please, Pray that my son and my family get the services and supports that we need.