TABLE FOR TWO, PARTY OF ONE
by Cathy Jameson
I don’t know if it’s the recent time change, the approaching seasonal change or just crazy hormones. I seem to be in a funk more and more lately and can’t shake those nagging what-about-me feelings I have. Part of the pressure I feel is the mounting stress of preparing for a new baby in just a few weeks. Some of the stress comes from everyday living while rearing four young children, one of whom has special needs. Most of the stress is a self-induced pity party watching my child make some progress, regress a tad and then remain developmentally stagnant.
I’ve started to question many issues in my life. The first and most pressing question is about that cute little guy I’m fighting so hard to help. I can’t help but ask why is this so hard? Why can’t I have one of those amazing recovery stories parents report on my message boards? When am I going to see leaps and bounds progress that deserves a front-page headline? Am I doomed to question my research or Ronan’s development forever? Can I handle that pressure?
I’m usually a happy-go-lucky optimistic. My cup has always been half full. If it needs some refilling, I refill it myself. I don’t like to sit and just watch life saunter by; I want to be in life as much as possible. I put on a smile and attack whatever comes my way. People always tell me how astounded they are with how much energy I have. It’s this confident part of me that has temporarily left, and I am scared I’ve started to cave in to negative thoughts about Ronan’s future. Lately, I’ve started to ask myself: would it be so bad if Ronan stayed mentally a two- almost three-year old? Isn’t it okay that he’s doing something constructive even if it is push that damn button on his Leap Frog toy over and over again? A gluten-full cookie isn’t going to kill Ronan, so do I have to be the food police all day long?
One day this week Ronan had a major meltdown coming home from school. His angst, tears, head banging and wild screams brought me to the lowest emotional place I have been in a long time. Something obviously got the better of Ronan and since I couldn’t solve his problem, it started to eat away at me too. I want so much for Ronan to join me, play with me, laugh with me. Instead, something took over and he slipped away from me and the small sense of security I thought I had achieved. I wanted to throw in the towel and give up everything we’ve been fighting for. While I watched Ronan go through such a fit of rage, I let my strength and will to fight fade completely away. I so reveled in a bad mood that I had to put myself in time out. This pity party wasn’t planned nor will I allow it to come back.
Of course today is a better day and we’ve both had some time to heal and snuggle. Ronan did enjoy hearing a song today while I was singing nursery rhymes to the kids. I got to see that sweet smile slowly emerge and his big brown eyes light up as I sang about a bumble bee getting squished. He laughed and then came to sit in my lap—even bouncing to the beat! Progress! Slowly but surely, I felt some kind of positive energy come back, a positive force that I want to cling to.
I’m sure Ronan is going to have more ups and downs, go through exhausting days full of miscommunication from us, his teachers and therapists. While my pity party is almost done, I am working on tucking my own emotional thoughts away since they obviously don’t help, can’t contribute to recovery and just get in the way. This little boy never asked to be injured by his vaccines, never asked to lose what precious few words he had nor did he deserve the mental frustration he goes through on a daily basis. As much as I think it’s unfair for me to have to adapt my own ways as I raise my child with special needs, Ronan quickly and loudly reminded me during his recent meltdown that his life is not where he wants it to be either.
Ronan is a fighter and he’s bound and determined to let that be known on his bad days as well as his good days. I forgot in a sad and tense moment that he’s my inspiration. Thank God I had just a few brain cells left once my own negativity drained out of me and I can now get my mind back on track. My pity party is over and I’m ready for the next challenge of caring and loving that little kid again.
Cathy Jameson and her husband have 4 children. Their family is anxiously awaiting a new baby in the spring—it’s these little people that bring the family together despite the stress and busy-ness life throws them.
Remember your “white car” dream whenever you feel discouraged!
It’s a reminder to you that your boy is on the road to recovery – slow and steady progress is being made – don’t ever lose sight of that precious FACT.
Posted by: Kelli Ann Davis | March 24, 2008 at 12:37 PM
Thanks, everyone for the encouragement. Our week got loads better and Ronan ended up doing some pretty darn amazing things. I suspect die-off hit him like a ton of bricks with that rage-filled fit but then his little body got some kind of balance a few days later. Two days after that bad, bad day, Ronan put on his sister's pink sparkly slipper shoes. laughed and then picked up her tutu and tried to put it on. It was so neat to see Ronan motor planning, using his imitation and imagination skills.
I know it's baby steps most of the time with recovery. I just wish we could fast forward through some of the terrible times to see that inevitable progress overwhelm us in such positive ways. We're hanging tough as usual, taking things in stride and keeping our heads above water.
Posted by: Cathy Jameson | March 23, 2008 at 09:18 PM
Thanks for this; and, take care of yourself.
Posted by: T&J Moore | March 23, 2008 at 06:53 PM
Stay strong Jamesons. Even at your weakest, you are so much stronger than us. You continue on where most would break down. We are very proud of you.
Posted by: Paul | March 23, 2008 at 03:05 PM
After I had my two children, I felt a sense of relief. They were both normal, healthy girls. Having been in Special Ed since I was 21, I worried during my pregnancies about what could go wrong. Nothing did. Then I became a grandmother. The old worries crept into my thoughts, once again...What if...???? But my grandchildren entered the world, one by one in perfect health... I was present at 4 out of 6 births and was there within an hour of the two that came early! We were home free! We had everything to look forward to as grandparents.
We were up to 5 grandkids when Deb's 4th child entered the world. Then, one day, #3 was in the wrong place at the wrong time...Noah, almost 20 months, was present at his baby sister's 2 month wellcheck. Deb walked into the office with 2 of her 4 healthy children when Noah was "targeted" by the Ped to receive a flu shot. After the Doc scared the bajeebies out of my daughter by telling her that her son could be hospitalized or even die if he wasn't protected from the flu, Deb believed her...and the rest is history!
I now have six grandchildren from my two beautiful daughters... one has special needs... mercury poisoned. From the day I recognized that his development had taken a nosedive, my life changed... My bubble burst and my dreams crumbled.
Noah's autism journey has been a rough, bumpy and financially draining road for all of us. But he has forced me to stop, refocus and form a plan. His autism has become my mission, and I will not allow myself to get old or to enjoy that grandmother's "rite of passage" until he is completely recovered...(I better be careful what I wish for, huh???...LOL!)
After 3 1/2 years of diet, supplements, chelation and therapy, I have to say we're close. Noah will have a good life. He talks pretty well, now. He is cognitively close to his grade level, he plays ball, shoots hoops, golfs, swims, loves cross country and has even tried wrestling. He has friends (some with autism) and is the most loving and affectionate child of the bunch. He no longer has to be strapped into a stroller when we go to the mall or to a sib's school function. He no longer freaks out when he sees a dog. He no longer breaks eggs and dumps milk on the floor and lines up the cheese squares, or empties entire bottles of fish oil into the fish tank. He hasn't chelated his sister with a $90.00 syringe of DMPS for 2 years now. He doesn't scream or cry because he doesn't know how to say that he's hungry. He poops in the toilet and is not plagued by encopresis or other bowel problems. His dark circles are barely noticable and his distended belly is flat. No more chronic ear infections, strep, croup or pink eye. He gets an occasional cold and/or fever, so I know that his immune system is up and running.
In the past few months, whenever I asked him how school was, he predictably answered in a flat monotone voice, "Good". When I asked what he did, he would usually say "Sensory". When asked about his friends, he would answer "Carly spits" or "Jack's bad".
But last Wed. on the way to Music Therapy, he surprised me. I asked him how school was and he said "Good"....but he continued: "We went on a field trip to the library. He proceeded to tell me that they heard a story about baking cookies. He told me that they go to Camp Cheerful on Tuesdays and that his best friend is Dillon... and he went to his birthday. He said they made cars at the party and raced them. He then asked me if I had any snacks!!!!
At music therapy, he met one of his goals by independently playing with the other boy in his class. He initiated a drumming game, choosing Alex over one of the adults!!!
Later, at the restaurant, he played tic tac toe with me on the kid's menu. He printed some words with beautifully formed letters. At home, he has built virtual rooms for his "Webkinz" on the computer, and is a wizz at Wii and his Nintendo DS! My once moderately autistic, vaccine injured little boy IS recovering.
Noah will be 7 on May 29th. We didn't begin intervention until his mom and dad were ready to accept that their third child had autism. Noah was 3 before he even got a diagnosis. Although progress was ongoing, we were often blindsighted by the setbacks: the tantrums, the lack of focus, the inability to communicate his wants and needs without losing it... The destructiveness, face pinching, eye polking, ear pulling and self inflicted scratches on his chest and tummy...the lack of functional language, the scripting and the echolelia are all pretty much history.
We still experience periodic setbacks, and with each one, I struggle. I worry that my little guy may loose his place in the recovery marthon... but whenever I'm at my lowest, Noah raises me up!
Your funny stories...your love for your family and your deep sense of spirituality inspires me. But it's your determination to recover your son, and your expression of vulnerability in the process that promts me to share with you, Noah's progress. We were "there" not so long ago. When Noah was tested and evaluated for school placement at 3 1/2, he was a full 2 years behind in speech and some areas of daily living and school readiness skills. He climbed up and jumped off windowsills at school and his cries and screams reverbirated down the halls when it came time to transition to speech or to gym. Like you, we cried in between smiles and laughter because the reality was always there that Noah may not recover... but he IS recovering, and by sharing this with you, I hope and pray that you will look to the future with full hope for Ronan's recovery.
Oh, and that thing about not getting old until Noah recovers? I changed my mind... he's recovering but I'm staying young!!!!
Posted by: Trish | March 23, 2008 at 12:56 AM
Hey You! If there were no pity parties how would we gage the good times? There are days when nothing can pull you out and I am so proud of you for wallowing, capturing your feelings and then sharing. Many days go by when it just seems like you,as the responsible adult, must do all the work. Remember there are other responsible adults around if you ever need help :) Katy
Posted by: Katy | March 22, 2008 at 05:12 PM
Once again you have written an amazing article. Your love for all of your family shines through in everything you write as bright as your beautiful smile. I can't imagine how hard it is to see Ronan go through those bad days it must be heartbreaking. As I have told you before God could not have chosen better parents for your wondeful 4 and soon to be 5 children. Allow yourself the pity party and when you have one ask for Gods help and he will carry you through. God bless
Posted by: Jayne | March 22, 2008 at 04:22 PM
Whenever we are feeling like Jamison is stagnating, we pull all supplements and focus on three things:
- Killing yeast
- Killing clostridia
- Killing strep
We're always thrilled with what we see amonth after starting this - maybe worth a shot.
Posted by: JB Handley | March 22, 2008 at 02:36 PM
Cathy, you are obviously a caring, and loving person. That you have 4 kids and are about to have a 5th is fantastic. You are the kind of person who should be a mother to many. While I am the mother of ASD twins, with no neurotypical siblings to offer my children, I completely relate to your struggles. We all want the world for our children, no matter what their issues are. When we dare think about the effort that it takes to help our ASD afflicted children achieve what is expected of them in our society, we parents are immediately struck with two conflicting thoughts: 1) the wonderment of how far our children have progressed with therapy and interventions, and 2.) how far they still have to go to compete with their typical peers on an even playing field, if that is even possible. We are all in this together. Remember that.
Posted by: Gayle | March 22, 2008 at 02:21 PM
Do you still have Ronan's video where Fiona makes "the baby laugh"? How about the one where dad takes him on a bumpy ride down the stairs? He has an infectous laugh...doesn't he?
Posted by: Joe | March 22, 2008 at 01:48 PM
Cathy, as always, you have such a beautiful way of telling your story. You are perfectly normal when having those bad days and pity parties. I would worry about you if you didn't! Just remember that others can see the little improvements in Ronan even when you can't because you are so close to him. Also, perhaps Ronan is learning something from you during your low times also.
Posted by: Mimi | March 22, 2008 at 01:42 PM
Cathy, thanks for your inspirational story. I'm also a parent of a child with autism and many times this past week have had pity parties thinking "I hate my life, why can't I have a normal life". I've been listening to the presidential race speeches about the "American Dream" and realized my family will never have the "American Dream" all because of vaccine damage, all because of incompetence at the FDA/CDC/AAP.... And then there's my son who I feel has been kidnapped by vaccine damage and I am trying so hard to get him back with therapy, vitamins, supplements, special diets. It is working, but sometimes it we take a step back and the whole effort is draining of our family’s resources, energy, time, money. I feel guilty that my other children have to sacrifice a "normal childhood" because of vaccine damage. Ok pity party. Maybe its spring, everything is supposed to start fresh and bloom, but we can't do that, we are living from the mistakes of the past, the mistakes we did not carry out, but are so terribly affecting our children, our families, our lives. Like you, I try to take joy in the small things, the small accomplishments, because the big picture is too overwhelming.
Posted by: Pity Party 2 | March 22, 2008 at 11:54 AM
Cathy,you are not alone.The hardest thing in my life is to watch my child suffer in silence.I do what I can and pray for my son,knowing that God has a special place in heaven for him when the end has come.
Posted by: Richard | March 22, 2008 at 11:53 AM
"While I watched Ronan go through such a fit of rage, I let my strength and will to fight fade completely away."
Cathy, this is MY strategy for moments like this - I think of all the evil people who did this to my child and CONTINUE to do this to other kids. Try it. Its amazing how quickly the will to fight comes back. We are at WAR. There will be many battles before victory is achieved, be ready to be nimble and quick when the war cry is issued.
Posted by: Autism mom | March 22, 2008 at 10:20 AM
It's alright for us to throw ourselves pity partys whenever we need one. It's alright to get angry, to cry, to let it all out. We are only human. We grieve for our kids, but celebrate every step forward they take, and it is o.k. However we deal with the anger over vaccines and ignorance, the grief of losing our kids to the harsh world of autism, or any celebrating we need to do for each small step-we all need to know that the emotions we feel are all human, and we need to let out a scream every now and again. What's important is that we don't stay in this world of emotion, that we turn this energy into the fight for our kids, we take time to hug them and love them daily, and that we all stand together. We all go through this. We are not alone. I find my closest and dearest friends in the autism community. Sometimes perfect strangers who I instantly bond with. Dear friends who understand me, who I can talk to and relate to. On a lighter note, I recently celebrated my son's normal looking poo-it is only with these parents that one would understand what a "poop party" really is all about. Hang on, although you don't know the thousands of parents who feel as you do, we are standing with you, through every day, and every emotion. Keep up the fight! You are doing great.
Posted by: Julie | March 22, 2008 at 09:46 AM