Thursday, 29 January 2015

The Measles Outbreak: A Reality Check

Disclosure:  I have two children with autism, they are both fully vaccinated.  I believe that vaccination is hugely important and my children WILL be vaccinated.  I don’t want them to die of a disease that could be prevented.

Guess who is not fully vaccinated in this family?  Or at least is more likely to be an issue.   ME.  And my husband.  In your family, it’s likely YOU.  Why? 

Two doses of vaccine were not recommended until 1989 – meaning that anyone over the age of 26 today may not have received a booster. Orenstein says the CDC for this reason advises adults traveling outside the U.S. get an MMR vaccine.
According to an article in the Journal of Infectious Diseases, people who were not in the targeted age group went unvaccinated, leaving a gap of people in older age groups who were not protected. "The major problem with measles in highly vaccinated populations occurred among middle school, junior high school, senior high school, and college students," the article read. "The quickest way to eliminate that problem would be a mass revaccination campaign of all such students. This was considered too expensive and logistically difficult to carry out."
Orenstein says the reason public health measures focus on vaccinating younger children is because they suffer the most severe consequences of measles. This approach, however, means some adults could have been missed during that time period. "What I wonder about are these people who fell through the cracks," Orenstein says

Here, directly from the CDC website:

Measles, mumps, rubella (MMR) vaccination
• Adults born before 1957 are generally considered immune to measles and
mumps. All adults born in 1957 or later should have documentation of 1 or
more doses of MMR vaccine unless they have a medical contraindication
to the vaccine or laboratory evidence of immunity to each of the three
diseases. Documentation of provider-diagnosed disease is not considered
acceptable evidence of immunity for measles, mumps, or rubella.
Measles component:
• A routine second dose of MMR vaccine, administered a minimum of 28
days after the first dose, is recommended for adults who:
— are students in postsecondary educational institutions;
— work in a health care facility; or
— plan to travel internationally.
• Persons who received inactivated (killed) measles vaccine or measles
vaccine of unknown type during 1963–1967 should be revaccinated with
2 doses of MMR vaccine.
Mumps component:
• A routine second dose of MMR vaccine, administered a minimum of 28
days after the first dose, is recommended for adults who:
— are students in a postsecondary educational institution;
— work in a health care facility; or
— plan to travel internationally.
• Persons vaccinated before 1979 with either killed mumps vaccine
or mumps vaccine of unknown type who are at high risk for mumps
infection (e.g., persons who are working in a health care facility) should
be considered for revaccination with 2 doses of MMR vaccine.
Rubella component:
• For women of childbearing age, regardless of birth year, rubella immunity
should be determined. If there is no evidence of immunity, women who
are not pregnant should be vaccinated. Pregnant women who do not have
evidence of immunity should receive MMR vaccine upon completion or
termination of pregnancy and before discharge from the health care facility.
Health care personnel born before 1957:
• For unvaccinated health care personnel born before 1957 who lack
laboratory evidence of measles, mumps, and/or rubella immunity or
laboratory confirmation of disease, health care facilities should consider
vaccinating personnel with 2 doses of MMR vaccine at the appropriate
interval for measles and mumps or 1 dose of MMR vaccine for rubella.

Now, tell me, have you all followed this guideline?  I am a nurse right?  I worked in a hospital for the first 8 years of my career.   I had to get my hepatits B vaccination as part of being employed; I had to get TB tests annually.  I was expected to get the flu shot.  No one checked my titers for measles, mumps or rubella.  And for people in my age range, we should be checked.

“Anti-vaxers” are to blame right?  Did it occur to you that you may be a big part of the problem too??  I think there needs to be more education about this issue. 

On “anti-vaxer” parents:  I disagree with not vaccinating your child.  I do.  I have done a ton of research as a mom, and even more as the mom of two boys with autism.  The benefits do outweigh the risks.  If you are worried about your child having a reaction, there are measures you can take to help “shore up” your child’s immune system, to protect them the best you can.  And you can spread out vaccines (although not the MMR which is no longer available in separate doses- .  Which I believe is fine- as long as you take the time to follow through.  I have a good amount of medical knowledge, both professionally and of course personally.  Even with all of that information, my education, and my experiences, I have found myself questioning the norm.  And I have had numerous medical professionals tell me the norm is wrong, I have had professionals tell me that my son is vaccine injured.  Literally told me that.  Once again, I am well educated and have a very hard time swallowing all of the conflicting information.  Imagine how those who have less information and are hearing these statements must feel. 
What pisses me off is the holier than thou people out there that slam anyone who questions the status quo.  And I mean- Pisses.  Me.  Off.  Most of these parents do not have children with autism or other health issues, in my experience. It’s easy to judge when your toddler is running around you saying WORDS and going to regular preschool.  When you haven’t had a professional tell you that vaccines have affected your child negatively.   I have come so close to defriending some people who are otherwise dear to me lately because I can’t stand the snide posts that are constantly in my news stream.  I have chosen to block their posts instead, we all have our opinions, and I can love you and not agree with you.

I have kept my mouth shut to this point because I feel like I will be attacked no matter what I say.  But screw it, I started a blog to express myself, and this is how I feel.  Before you go attacking parents for not vaccinating, look at the facts above, we, as parents, are being infected MORE than our children.  We are more responsible for this outbreak spreading than any unvaccinated children.  Get your titers checked people.  We are just as much to blame for this situation, if not more so.  So yes, kids need to be vaccinated, but so do we.  It’s much easier to blame the problem on others, to single out one group, especially when you disagree with them to begin with.  If only it were that simple.  

Tuesday, 27 January 2015

Autism Parenting and Chronic Stress

Lately I find myself on the verge of my own meltdown fairly regularly.  I have so much on my mind that I have very little capacity to handle the unexpected, and unfortunately, the unexpected happens pretty much daily.  I am chronically tired and constantly planning my day in 5 minute increments, it gets old. 

I think this is the case for most moms out there; we all have to cope with constant change.  That being said, I still believe that my life as a mom is quite intense.  My job is intense, and never lets up, not for inclement weather, or holidays, or illness, nothing.  Working from home- people always tell me how lucky I am- and it’s true in many circumstances.  However, the past 6 weeks have been HELL.  The boys’ childcare closed for a week and a half over Christmas, then has been closing for any and all inclement weather.  The end result has been me, at home, with two children with autism who literally do not understand the idea of “being quiet” (yes, I know moms are going to say no child does, but I PROMISE you, this is different), a 30 phone call daily requirement with all calls being recorded, and constant fear that I will lose my job if Jack chooses to come in and start talking about his latest obsession during one of the calls that will be listened to.  It has involved me locking myself in my office at various intervals to make important calls with two small children pounding on the door and crying.  It has involved me running all over the house with my computer, hiding, just to get something done.  It has involved me allowing my kids to constantly watch TV when I am totally against it.  And while I have gotten some offers from people to sit for the boys during the bad weather (which it has to be said, has never been bad enough for anything to actually be closed), I am already paying for the closed childcare and cannot afford to pay for more.  It’s an awful situation, and I think that people forget on both ends just what we as parents are trying to juggle.   I find myself feeling like a bad parent (see above TV statement) and a poor employee (seriously, try to get the 30 calls in each day, with kids at home, school tours daily like last week and an IEP meeting to boot- try).  My house is a mess, laundry is everywhere, there are potato chip crumbs all over the floor from me shoving food at the boys to try and keep them quiet while I am on the phone.  My parents live just far enough away that when the weather is even a little bit rough I feel bad asking them to come help, John’s new job takes him an hour away each day, and he has no vacation or sick time because it is a new job- so I am on my own.

End result- I am slowly losing my mind.   I also decided to do a 60 day “insanity” diet and exercise challenge starting in January. HA!!!!!  After 2 weeks, and only 2 pounds lost, I found myself so lightheaded while visiting my sister and trying on bridesmaids dresses that I ended up outside a Panera tossing my cookies.  Yep, good times. 

This constant “fight or flight” crap is mentally exhausting.  If I could get one day of “just work”, well, honestly I don’t know what I would do.  I see some dancing though, definitely dancing. 

The cherry on top is the whole autism parent-advocate role.  This spring is extremely intense, trying to decide Nate’s next step- he is going through a series of assessments over the next 60 days, I am touring his different school options, and then comes the big meeting with the current school staff, the “transition team” , his outside teachers and therapists, and mom and dad in March.  We also became aware recently that our health insurance with John’s new job covers ABA, which is amazingly, fantastically wonderful.  However, it has involved a ton of paperwork on my end, not to mention the assessments that are coming up connected with that, etc.   I will say that I am ecstatic about finally having the opportunity to provide my son with ABA- it’s one of the few “proven” therapies for autism and it has killed me that I haven’t been able to do this for him (it’s you know, thousands of dollars each month).  This development is a huge mark in the win column for our family.  Nate also recently started some new medical treatment, which involves weekly trips to the pediatrician.  Oh, and grant applications for state funding were also due this month. 

What chronic stress?  I’m all good over here.  But if you hear a primal scream emanating from our general vicinity, well, it could possibly be me.

Tuesday, 20 January 2015

Kindergarten Planning In Our Alternate Universe

It doesn’t matter how long you have been preparing yourself, how many times you have told yourself that it will be fine and you are prepared for what is to come, that you are doing what is best for your child.  When the time comes to confront your child’s challenges yet again, it HURTS. 

I remember Jack’s kindergarten transition, how nervous I was, how concerned I was that he didn’t have the services he needed (he didn’t) and that he would struggle a lot because of it (he did).  And now I know that relatively speaking, it was child’s play.  That experience was merely the training wheels for now.  The training wheels are off, and I find myself having a very difficult time coping.

Bottom line- I want my son to go to kindergarten.  I know that he can’t go- not to traditional kindergarten.  But right now, I am mourning this loss.  Even though I thought I had prepared myself.  I am angry, and I am devastated.  I am disappointed in myself, and all of the interventions and therapies that we have employed to help Nate.  We couldn’t get him there.  And God knows we tried.  I feel like a buzzer is going off “buzz!  Time’s up!”  Early intervention time is over, time to move on.  You had your chance and you blew it.

That’s not “what it is”, but right now, that’s what it feels like.   It’s hard to accept that these years of early intervention, these years that I was assured would be effective and I “wouldn’t even recognize my child in a year”, were unable to get him where he needed to be.  My kid is obviously not the only one, and we are super lucky to have the options that we do, but honestly, that doesn’t make it hurt any less.  I hurt for him, for what he doesn’t even know he’s missing.  I hurt for my husband, who would love to be able to coach a team for him and likely never will.  And yes, I feel sorry for myself.

I avoid moms who have kids Nate’s age, even friends who had babies at the same time I had Nate, especially when their kids are with them.  It is so incredibly painful- even if their child just interrupts a conversation “mommy, can I have this..?”  I can’t take it anymore.  It’s so incredibly, beautifully normal.  These kiddos are going to go to kindergarten and my beautiful perfect son will not.  They will be getting on a bus of their peers for the first time; my son has been taking a bus every single day since he was 3.  I ran into someone in the grocery store last week, her older son was in Jack’s preschool class when he was 3.  She has a daughter Nate’s age.  She was talking about the preschool, where her son continued to go, that her daughter is about to “graduate” from.  This weird feeling came over me.   It’s like I forgot it existed.  I forgot that world kept going when we had to bow out.  Nate never got to go to preschool.  I guess those other kids did- why this didn’t occur to me is beyond my comprehension.  We are living in an alternate universe over here.

We will be fine, I will be fine.  We will find a good program for Nate.  None of those things are in question at this point.  I just need to go through the process of letting this happen.  Of reacquainting myself yet again with what will be our “normal”.  I know that I would never want to subject Nate to typical kindergarten; it would be absolute torture for him at this point in his life.  But letting go of that dream, it’s just really hard.  No one will ever know what it’s like until they experience it.  See, there I go, trying to try to wrap a nice little bow around this post and end on a positive note.  You know what?  I’m not gonna do it.  THIS SUCKS.