Hope.

By Barbie Hines

I ran into a pre-autism acquaintance at the grocery store.  She was one of eight mothers in a Kindermusik class with my son, Jimmy, and I before he was injured.  Eight adoring mothers with eight perfect 6 month olds.  The class was obnoxious.  I even knew that then.  Eight mothers with eight well dressed six month olds, secretly comparing our super baby to the others each week.  I didn’t want to be a stay at home mother, but I had made an agreement with my husband that I would stay home for at least one year.  I was losing my mind being at home all day, talking to the dog.  I had worked for seventeen years prior to having Jimmy, so I didn’t have any local friends.  Heck, I didn’t even have any friends with kids.  I needed this class to meet other mothers.  I had to start talking to two-legged creatures.

I didn’t really relate to any of the mothers.  They only wanted to talk about the best preschools and complain about their bodies.  They started to form Bunco groups.  I didn’t know what that was.  They took Mommy and Me yoga classes.  They had their children photographed monthly. 

However, they did talk to me.  And best of all, my son was always the first.  It drove them crazy, but it made my husband and I laugh.  Who cares which child walks first?  Who cares which child counts first?  At the time, I thought it was fitting that the one mother who wasn’t competitive about her child had the child who did everything first.  I don’t think it’s so funny anymore.

So this mother said hello and then asked, “How is Jimmy?”  I use to put on my happy face and give positive, upbeat responses to this question.  “He is great.  The little guy has to work hard, but he is progressing beautifully.  His new protocol is wonderful, and he is so darn smart.  The sweetest little guy ever.”  Never mind that he wasn’t sleeping more than 3 hours at a time.  Never mind that he was smearing poop all over the house.  Never mind that he wasn’t picking up on communication.  I wanted people to view him as a human.  I wanted people to realize he was smart and wonderful.  I wanted people to stop viewing our family as pathetic.  But we are now 4 years and 8 months into our diagnosis.  Things have changed.  We have changed.

We began our biomedical journey 4 years and 8 months ago.  Our first step was the gluten casein free diet.  I laugh as I think back to this process.  I felt mastering this diet was so difficult.  I hired a babysitter and spent over four hours in the ‘healthy’ food market reading labels, consulting my cheat sheets and leafing through three gfcf cookbooks that I had purchased and overnighted from Amazon the previous day.  When a store attendant offered to help me, I cried as I tried to say, “I’m looking for gfcf products for my son who has just been diagnosed with autism.”  I came home with hundreds of dollars of products and cooked into the wee hours of the morning.  For the next three weeks, my son ate only gfcf pretzels.

We then poured ourselves into Floortime, DAN!, speech therapy, occupational therapy, therapeutic listening, every type of chelation, Yasko, developmental therapy, RDI, VBA, moved to try a new school system, moved back and set up a private school in our home, gave birth to another child (still not sure how that happened), RPM and everything else we heard of…and POOF!…four and a half years had passed.

Here we are, nearing the five-year anniversary of my son’s diagnosis.  What a journey.  What a mind game.

Most of the time, I am confident about our plan.  We have one of the tough nuts, and we have accepted that.  You initially die with the diagnosis.  Literally, I believe a part of me died with the injury.  But then you become a gladiator.  Nothing will stop me.  I can go without sleep, money and friends for a few years.  I will give up whatever I have to for three years.  Then he will go to mainstream kindergarten, and I will piece our life back together.  But after three years of teeny tiny gains, you have to accept that you will be one of those with a long road.

The diagnosis was a major breakdown.  Certain roadblocks present mini breakdowns.  Something hits us, and I think I cannot do this anymore.  I visit Pity City for a few days, or even a few weeks.  But then I return and keep fighting.  My son’s fifth birthday was a mini breakdown.  He wasn’t going to mainstream kindergarten next year.  Heck, at this rate, he may never even attend school.

I climbed out of that breakdown.  New plan.  New energy.   New era.  So I was going to have many more years of this.  Fine.  I can do it.  Childhood is a relatively short period of time in someone’s life.  Many adults would love to forget their childhood!  I will make sure Jimmy’s adulthood is nothing short of remarkable.

We are now almost two years into ‘making adulthood remarkable’, and I find myself struggling with conflicting thoughts almost daily.  Am I kidding myself?  Should I be focusing on creating the ideal adult assisted living scenario?  Should I be trying to get more involved on a national level?  Should I throw all thoughts of the future out of my mind and simply focus on the here and now?  Is my child one that is just not going to get better?  Am I just tired?  Am I missing a major component of his biomedical care?  Am I over treating him?  Could someone else take over and make these decisions for me?

The mind games regarding how to treat your child and how to plan for your child are exhausting.  And then you have to figure out how to answer, “How is Jimmy?”

So I replied to the mother, “We remain filled with hope.” 

Hope.  The word that has been feverishly promoted for the past ten months.  I stood in Grant Park listening to President Elect Obama say ‘hope’ yet again, just a matter of hours after I had claimed to be filled with hope for my son.  The crowd of thousands around me was nothing short of enchanted, impassioned and blissfully united.  I was not.  I did vote for President Elect Obama.  Oddly, it wasn’t a difficult decision for me, even though it was the first time I have ever voted for a democratic presidential nominee (sorry about that Bush thing!).  Even though I do not feel convinced that he is on my page regarding autism.  Even though I was never entranced by his Kennedy-like charisma.  I think it was the hope.  Neither candidate said what I wanted to hear about autism.  Neither candidate addressed what they would do to help my son.  Sure, they have plans to help the babies, and they alluded to plans to help adults, but what about my kid?  Hope was all I had to grab onto.

There weren’t many dry eyes at Grant Park, including mine.  But my tears were different.  As people chanted,  “Yes we can, yes we can” I felt like screaming, “Please get it, please get it.”

Barbie Hines is the proud mother of Jimmy, who is afflicted with autism.  Along with Reagan (Jimmy's sister) and Jimmy's adoring father, they live in a suburb of Chicago, Illinois.

Comments

[cblakey]

Wonderful piece, Barbie. Truly touching. I was feeling the same thing last Tuesday night, just 9 miles west of Grant Park;)
-cblakey

[Barbie DeWitt]

Hey Barbie,
I am traveling the same road with my 10year old and have been for 8 years! My son is progressing very slowly and it is so hard to watch him and even harder to be consistently positive. I am now in "Pity City" again! I hope our new President will be the one to finally wake up and see where our future is heading!

Barbie DeWit
Spanaway ,WA

[Carolyn Coughlin]

This was fantastic. You are amazing to keep going and going and going. My child was also first at everything and I related so much to what you said. But my child responds to everything! Even melatonin made a huge difference . We saw a change in 3 days with GFCF, etc. It is so much easier for me because my child responds and I can see things happen when I try things. My heart goes out to you. I feel survivor's guilt sometimes because my child is not as severe, partly because I was warned about vacinnes before we finished the whole schedule. Because of parents of older children speaking up who saved my son from further damage! (THANK YOU IF YOU ARE READING THIS!!) . But then I realize that something WILL work to help all of our children get all of the way back . . . We will find the cure!

I had tears in my eyes today as I read the following. My recovering child helped me vote for Obama, his hand over mine. I felt that our efforts were not misplaced. And the speed at which this happened made me very happy.

http://www.autismvotes.org/atf/cf/{2A179B73-96E2-44C3-8816-1B1C0BE5334B}/Obama%20federal%20mandate.pdf

He also put out a statement that Combatting Autism Act should be fully funded.

I also have hope that he will green our vaccines. He gets that mercury is dangerous. How can he not get that mainlining it is dangerous to infants? I think once he gets educated on that, vaccines will be cleaned up:

From Barack Obama September 2008
http://adventuresinautism.blogspot.com/2008/10/obama-sponsors-mercury-ban-bill.html
"We know that mercury can cause serious developmental problems in children and problems affecting vision, motor skills, blood pressure and fertility in adults," Obama said in a statement. "While the United States has improved its efforts to collect and contain mercury, this country remains one of the leading exporters of this dangerous product."

[Dana C. Sturdivant]

Great story Barbie! I wish all these children had awesome mom's like you. You keep fighting for your son! I am about to have celebrate my son's fifth birthday and I have decided to make it a great one, only focusing on the positive's we've acquired over these last two year's and focused on excitement over finally finding the road that may lead to his recovery or just more words, whatever may be the case we will keep fighting! Amen to you and all the other Supermom's....We are earning our wings or should I say I think we probably have earned wings!Ha!
Dana

[Grace]

I know there are some here who would like to believe that autism is a Bush-caused problem or a Republican-caused problem, but the Democrats are hardly exempt from responsibility in this mess.

Clinton was in office just before my son was born & all during his immunization schedule years - the ones where the govt. forgot to add up how much thimerosal we were injecting into our babies.

Hillary was looking at how to improve our healthcare system & part of that improvement was to increase the number of vaccines for our kids.

It was during the Clinton years that Heb B was added to the schedule as mandatory. I'm in the medical profession & I could not find a single dr. who considered Heb B to be necessary (prior to the AAP's requiring members to lockstep on it) It had to be about the money.

I don't deny that Bush's administration has some serious culpability on several points, but the idea that there is hope in Obama - never mind what he has said or done, but because he is new, "intellectually curious", & has a D by his name! - seems like a reach guaranteed to lead to disappointment.

As long as we place our hope in fallible human beings, we will always remain disappointed. How much moreso is that true for placing our hope in the same government that is so much a part of the problem to begin with. I'll keep praying for Obama & our country, as well as for help for our kids, but my hope is in something more substantial & trustworthy than bureaucracy...

[Lea]

You have a remarkable journey Barbie, and the best is yet to come :).

My daughter is 10 years old (Asperger's Syndrome)and ADHD...yes, I'm crazy now. I am embracing the madnesss.

I just want to say that "Hope Is Eternal", yes it is a cliche, but it is so consistent. All we have is hope.

My daughter came or her menstral cycle last week for the first time...you can imagine how distraught I felt.

I explained to her what it was, but she was unable to comprehend why and expecially why her stomach hurt so bad.

She went to school today loaded down with pads and baby wipes. I couldn't take off another day of work, so I called her teachers and cried half of the day wishing that I wasn't a single parent with bills up the kazoo.

If I could only be a stay at home mom...oh well, like I said. "Hope is Eternal".

Keep Up The Hope,
Lea

[Anita]

I have tears running down my face as I type this. It as if you wrote this for me or about me. That is what carries us all through this.... Hope. Thank you for writing this wonderful article. A mom with a 91/2 year old son with vaccine induced autism.

[AutismHope]

Barbie,

Well Said!! My son is 8 and I traveled the same road.

I'm with you on the HOPE!! Sometimes that's all we have to hold on to.

Doyle

[kat23]

Doesn't anybody else see this going to start a new direction of the government telling us what we should do all of the time??? May God help those who do not support this idealogy.-Jennifer

I have hope Obama, just like me, will be educated on this topic. He sounds like most people who have not had this affect their lives personally. As for you believing that this is a new gov't that will control what we do....imo...that is exactly what I hope to leave behind. The Bush years. And again, jmo, but the last 8 have seen a gov't do as it pleases at the expense of the people.

Hope is a good direction. And education, however you look at it, is a good thing. I see Obama as needing that education on autism...but I also see him as a good person and he should be afforded the chance to understand. The last 8 years showed NO promise of a better future. Today, I have hope. I still see the need for us as parents of vaccine injured children to be the ones who have to scream the loudest. McCain said positive things...but in all the time since he made is remarks about thimerosal, there hasn't been anything else from him either. That is not to say he's does not have good intentions. And quite honestly, whether he is president or not, he should continue this fight with us. I am not just sitting around waiting for the president to change this for me...imo, that is a a waste of time. I am however, going to bug McCain to continue, and write many more letters and emails about needing RFKjr in "the house" for he truly does understand our fight.

[Jennifer]

Does anybody here know that Obama wants to get rid of optional vaccinations????? HELLO. Thats not hope. That is what is getting our kids sick!!!!!!!! Doesn't anybody else see this going to start a new direction of the government telling us what we should do all of the time??? May God help those who do not support this idealogy.

[jennifer]

Does anyone out there notice that, besides even something glaring like autism or aspergers, there just seem to be more kids (especially boys, but not limited to) who don't seem "right." Almost like a minimal brain dysfunction? I know there could be many factors relating to this-both environmental and genetic (too much t.v.? , less parental attention? sexual abuse etc.) but I really notice so much depression/anxiety, behavioural problems, bi-polar disorder,seizures and just plain old "out of it" seeming kids. Any thoughts?

[K Fuller Yuba City]

There are so many of us living parallel lives within the Autism world. Reading your words was like our life flashing in front of my eyes. There are just too many negative forces working against us, all of the time, the Medical profession, the talking heads within education, the well meaning family members, the friends who fall away. Many people have told us that we can't make our whole lives about Autism. How can we not?
We have all learned the hard way that we have strength we did not know we had. Hope takes hard work. Hope keeps us going. I know that my child is worth it. We all know our children are worth it.

[Holly]

Barbie

What a story. I could have written it myself (if I had the talent). We are parents to a tough-nut child as well. 7.5 years old. You hit the nail on the head for me with what you wrote. And the hope thing--it is what gets me through the day more times than not. I also have another Jimmy's--this time Valvano's--"Never give up speech" from the ESPY's playing through my head almost every day. It's sadly comforting when someone "gets it" and you sure do.

[Teresa]

Barbie,

What a beautifully written yet painfully familiar story. Meg's story took place years before and sometimes I fantasize what it would have been like if she had not been born in 1993, as mercury, bacteria, viruses, and diet were not even close to being on my radar when she was diagnosed in 1995.
She also is a toughnut but like you, that does not stop the hope.

I love all that Obama stands for and also want to stand next to you and respectfully yell, “Please get it, please get it.”

[Brooke Potthast]

Barbie,

You explained it all so perfectly, every inch of it is what we have lived as well. I too have recently boiled it down to "hope". I have a phrase that summarizes my new attitude toward this journey, one I never dreamed would be so difficult and seem so endless. It comes from the New Testament which for some may make it less relevant but for me it says it all...I remain joyful in hope and patient in affliction. That's it-- only way I can live.

Love to you and Jimmy!
Brooke

[Sandy Waters]

I am also in the same boat with you. I live in a suburb of Illinois and I liked McCain/Palin stand on autism. However, President Elect Barack Obama seems like a sincere and reasonable person. We need to educate him on these issues about vaccinations and autism. As you may already know Illinois is dead last in providing services for autism so we need to change that as well as the rest of the country.

[jennifer]

Barbie, your story brought tears to my eyes -not tears of pity but tears of triumph of the spirit. Keep the hope!

[kim]

"Am I kidding myself? Should I be focusing on creating the ideal adult assisted living scenario? Should I be trying to get more involved on a national level? Should I throw all thoughts of the future out of my mind and simply focus on the here and now? Is my child one that is just not going to get better? Am I just tired? Am I missing a major component of his biomedical care? Am I over treating him? Could someone else take over and make these decisions for me?"

OMG those are the exact thoughts that went through my head as i avoided the world and stared into space this whole past week. i'm not doing everything, i'm doing too much, i'm killing myself, i'm killing the fun around me NOW. After 5 years can I be expected to keep on at this pace? 24/7 of hurdling forward to save my boy's life? it's a job no one should be having to deal with.

but today i woke up after a successful fundraiser yesterday under my belt and i hear my son having fun making a kite and i get ready for another day of helping him and those like him. just wish this job had a better paycheck! thanks, barbie.

[michele i.]

Great piece, Barbie! I feel like you're telling Jackson's story too.
Keep fighting the fight. and keep hoping. As long as there is hope, we have to keep going for our boys.
good luck on the rest of your journey.
:o)
~michele

[Tanners Dad]

Tanner was a star in Kindermusik as well. It has been more than eight years ago. He will get out the little raspy thing, the egg marimba, and the wrist bells. Mainly, I find them when I trip over them. It makes me yearn for those days. I was an odd site when a dad would take him to class. I was looked at like what is that man doing in our realm. Oh well, I digress. Awesome post. I too am not entranced by the new president elect. When one climbs up to the highest pedestal it is easy to get knocked off. I hope and pray that miracles will happen for our children, this generation of injured children, and the whole human race.
http://www.causecast.org/member/tanners-dad

[kat23]

Barbie, what an experience! And I can totally agree with the excitement of the moment and the need for Obama to "get it". I have prayed daily for RFKjr to be a aprt of his "people"...then I know that he will "get it".
Thanks for the read!

[Kub Marshman]

Barbie,
Your story and hope brought to my mind a quote from one of my favorite movies. "Hope is a good thing, maybe the best of things, and no good thing ever dies." Keep fighting and keep living.

[htbenz]

Barbie:

Powerful stuff! Thanks for sharing... God Bless You and your family...

[Stagmom]

Barbie, thank you. It must have been momentous to stand in Grant Park witnessing history. Like watching the Berlin wall tumble.

Hope - it's what keeps us all going. It has formed our community of parents who will never give up on our kids.

Kim

[dan olmsted]

What a great piece -- not just about how you came to make the choice you did, but about the day to day and year to year reality you are so gallantly and wisely dealing with. Here's hoping, too!