Brady's Page

72 Hours of Autism

The last 3 days have been the most overwhelming, informative, eye
opening and hopeful 72 hours since Brady’s diagnosis.  From money to
biomed to ABA...you name it, we lived it this week.  I’ll start with
Wednesday.

Wednesday morning we woke up at 7am as usual.  Speech started at 9:15
at home.  Brady had a decent session, but I witnessed the biting his
therapists had informed me of first hand.  When he is in therapy and
gets frustrated in doing something or can’t figure out how, he wants
to bite...actually I should say he needs to bite.  He doesn’t even
seem to have control over it, he just has to get it out.  He’ll try to
bite the materials being used or if he can’t have those, he’s even
tried his arm.  If you can get him his “chewie” quickly enough, he
gives it one hard bite, hands it back to you, and then continues on
doing great work through the rest of the program.  So, we dealt with
that, speech ended, IBI therapy began at 10am.  While he was with
Ashley (his morning therapist), I had a meeting with our Early
Intervention Specialist and our Waiver Support Administrator from
Delaware County.  FINALLY, we are being offered some financial help
for all we are doing for Brady!  We had tons of paperwork to complete,
much to learn about how the waiver worked, and although it was all
good news, it also meant lots more work to do.  But I will say these
ladies are incredibly timely, something they have
over a lot of the autism community professionals.  Wednesday continued
on as normal...naps for the boys...evening IBI session with
Mer...baths...bedtime...hours of calls and paperwork left for Mommy to
do.

Thursday came, another big day.  Brady is 33 months old today, and our
biomedical journey officially begins.  Brady’s first appointment with
Dr. DeMio was at 11am.  We arranged for my Dad to make the 3-hour trip
up to go with us to assist with Brady so Jerod and I could pay close
attention to the doctor, and Ashley babysit Ty at home.  Jerod
commented already on the appointment, so I won’t go into much detail
here.  I will say I can again see light at the end of the tunnel, hope
for Brady’s recovery.  After 3 hours, we left with information
overload, hope, and a lot of test kits.  No joke, I have spent the
last couple days collected urine, blood and stool samples from Brady.
Urine and stool are easy, he loves to peepee in the potty and, well, I
can use the stools from his diapers of course.  The blood...that comes
on Friday.  So, we continue on with a typical Thursday, the boys are
eventually in bed, and I begin preparing all the test kits for
samples, reading more on biomed, filling out
paperwork...etc...etc...etc.

Friday...by far the worst day yet...ever in my life actually.  Some of
the tests Dr. DeMio ordered were blood tests.  Brady had blood taken
once before, last summer after his diagnosis, to rule out a few
things, which came back normal of course.  I knew the lab opened at
8:30am, so I didn’t let Brady have any breakfast or drink when he woke
up (they are fasting tests).  We arrived at the Close to Home location
at 8:20am, and shortly after 9am we were finally called back.  We went
into a small room with a young lady and she soon decided to get a
young man to help me hold Brady still while she took the
samples...they needed quite a bit of blood (35 ml I think).  I sat in
the chair with Brady in my lap, I held his right arm and body while
the helper held his left arm still.  Already he is screaming and
crying trying his best to get loose, and he is VERY strong...but I
held him tight.  She sticks him, gets the tiniest drop of blood, then
it stops...I watch her move the needle all around in Brady’s poor
little arm and after no success, remove the needle.  He and I are both
crying hard, we hug, but I can’t calm him after that.  So, she moves
to the other side, I hold him down again, and she tries that
arm...again...no blood, removes the needle.  I bear hug my precious
little boy who is out of control with sadness, as am I.  I firmly ask,
“What the h— do we do now?” Her calm reply..."Policy is we stick
twice and then get someone else.” Seriously?  SERIOUSLY?!?!?!  I am
emotionally unstable at this point, I won’t go into much detail, but
my Dad has labeled me Jenny McCarthy after that morning.  Another lady
(older mind you, the first was younger than me) comes in, takes one
look at the two of us crying and says we should definitely lay Brady
down to make it easier for everyone.  So, we move to another room, lay
Brady down with me over top of him bear hugging him, someone else
holds his legs down, and the new lady gives his left arm another try.
One stick...one minute...all 35 ml are filled.  Had I known what was
coming that morning, I would’ve paid them a million dollars to have
skipped right to this lady.  Any 2-year-old would cry for a blood draw
I think, especially with the horrifying experience we had.  But even
worse, the autism doesn’t allow Brady to have the cognition skills a
typical 2-year-old has...so even the “Mommy loves you...it’s almost
over...you can have juice soon...this is to help you get better”
didn’t provide Brady any comfort.  I don’t know how I will ever again
bring myself to take Brady for a blood draw.

Friday continued on normally, ending with his biweekly IBI team
meeting.  This meeting began at 4pm, discussing how things are going,
talking about how to best deal with the biting out of frustration,
introducing new programs, planning for his upcoming potty party, going
over the stats from his work over the last 2 weeks, etc.  Finally, at
8:20pm, all had been discussed and everyone went home.  The meetings
are necessary, informative, good for planning, but also VERY draining,
mentally and emotionally.  So, 4+ hours of that set the boys and I up
for an incredible night of sleep.

So, the short of it, our lives for 72 hours consisted of nothing but
autism, more so than most days even.  Most of the
meetings/therapies/appointments were positive...good
information...financial help finally...hope for recovery.  But Friday
morning’s blood draw...the tears streaming down mine and Brady’s
faces...that is what I’ll have stuck in my head forever I think.

(((HUGS))) to you and Brady!  My heart just broke for you reading about your experience with the blood draw.  We had a similar experience with our son, Brayden, last Tuesday when we attempted to get him through an audiology appointment.  It is so hard to get our kids through experiences like that because, as you said, they don’t understand that it’s a short-lived thing - they feel truly terrified and don’t understand what is going on.  And as parents, we just want to protect our babies, so seeing them so scared and not being able to comfort them is heartbreaking for us.

You are a remarkably strong person for doing all that you do for your son and family.  I pray that the biomedical treatment will be successful for Brady, and that you and your family are given all the support and strength you need to make it through this journey.  Take care!

Although my son is now 5, our life is not much different than yours. My son, Caeden, has finally gotten to the point he deals well with doctors and understands what I say to him a lot better than he did when he was 3. Not that blood draws or shots are not still hard, but they have gotten better in the last two years.

Caeden also used to bite things, not so much other people (he did do it a couple times) but objects or himself. I think this is another sensory issue. We had this nuk teether that looks like a toothbrush with rubber-like bristles where we rubbed his tongue, gums, and mouth. That seemed to help a lot in the long run because he no longer bites on things. It may also be growing out of it, but I do feel that helped some.

Always remember this, no matter what anyone thinks, he is your son and you are his best advocate. Since he cannot tell people how he feels or whatnot, it is your job to do so. Even if that means insisting someone with more experience draw his blood, then you do it with your head held high. As a parent with a child who has autism, I understand what you go through and it is the absolute hardest thing to deal with. I have four kids and Caeden is my last, so from a person with prior experience in bringing up typical kids, a child with autism is and probably always will be emotionally and physically more stressful than anything else you will ever have to deal with...but things do get easier as they get older.

Good luck!