Gryffin’s Tail – Setting the stage…

I was sitting there, pregnant,  in an old 24′ travel trailer in the driveway of my house, which was torn apart. On purpose, even. When we first bought our house, we took one look at the view and knew this was our house. We couldn’t remember what the inside looked like, which was quite apparent when we bought our “grown up” furniture, but the view was exactly right. We knew that no matter how the house looked, we could make it better. And thus, we bought it, went back to our rental, and simply waited to move in. We bought furniture. Furniture that turned out to be much too big for our house. but furniture that didn’t fold, wasn’t used, and cost us a small fortune. And we felt proud. We were newlyweds, and we could now count ourselves as homeowners in a suburb.
 
We moved in and imagined all the wonderful plans we had for our house, and we couldn’t wait to afford them. Of course, we had things to fix, and inevitably a leaky faucet would somehow turn into almost a whole new bathroom, but that’s another story… Anyway, we dared to dream.
We decided to try for a baby. I was pregnant immediately. This pregnancy didn’t last long or end well. but we tried again, and in 2 months, we were pregnant. This one stuck. It wasn’t an easy pregnancy but I managed. During this beautiful time we had the brilliant idea to move forward with our renovation plans. We got the home improvement loan and plugged it all into place.
 
So that brings me back to pregnant and sitting in an older 24′ travel trailer in my driveway. 2/3 of my house torn down to bare studs. I could see straight through from the front of the house to the view out the back. We had been “living” in this travel trailer and the one room in our house that hadn’t been touched which was soon to be formerly the master bedroom. My son, Gryffin, had just qualified for Regional Center Services. I still wasn’t quite aware of autism, though. My husband was worried about autism from the beginning. Me, I had a strange absence of thought regarding autism. Even when I looked up symptoms of head banging there was enough on the web to make me feel, “No, it’s not that”. So many sites simply said many boys do it. When I told our pediatrician our concerns I was poo pooed. “Oh, he’s a boy” or “Oh, it’s no big deal” or “Oh, he’ll grow out of it” or “Oh, it’s okay that he doesn’t eat a lot” or any number of “Oh’s” you can think of so I felt pretty confident that my son was fine. This went on for months. As long as I had a “professional” telling me my son was fine I was more than happy to believe.
 
Our pediatrician never even referred us to the Regional Center when she finally did say he should be looked at by someone else after passing a hearing test when he 2. She tried to send us to a developmental pediatrician which would have been fine if they took insurance. So I called her back and told her that they didn’t take insurance and asked if she knew what else I could do. She had me call a speech therapist which turns out doesn’t take insurance either. The speech therapist proceeded to tell me all about why she was better for me to take my son to than the Regional Center. This was the first time I had heard anything about the Regional Center. I had no clue what it was or what they did. But I continued to listen to her and said, “uh huh” in all the right places knowing that as soon as I got off the phone with her I would be researching the Regional Center. As it happens, the Regional Center should have been the first call I ever made and I will be eternally unhappy with our pediatrician for not referring us there in the first place the very first moment we started mentioning concerns. While we waited for RC, we went to a speech therapist through our insurance. Speech Therapy was recommended but the hassle to get through it all and get it started was horrendous. By the time we got everything taken care of through our insurance we had Regional Center services so we never even went through our insurance.
 
When Gryffin was evaluated his speech was zero, his cognitive skills couldn’t be measured and when our OT did her eval she said he was the hardest child she’s ever evaluated. She literally could not breathe in order to keep him sitting in her lap to see what he could do. If she took a breath he felt it, would be reminded that he was in her lap and would take off running around the gym area. He simply couldn’t stop moving. He ended up with about 12 hours a week of various services. 2 sessions of OT, 2 sessions of ST, 2 sessions of Group Therapy at 2.5 hours a piece and in home Child Development services.
 
I thought, well, maybe this is what ADHD is since he couldn’t keep still and he just has ADHD and is a late talker. But as we started our services I saw all the other kids there, many with autism. I saw how he was very similar to them and I learned about stims and how to recognize them. He certainly had stims. But they were also very different from the other kids so I still had a little doubt that he had autism. He didn’t bang his head the way the other kids did. He would bang his forehead and not the back of his head by rocking. It wasn’t a soothing head bang. He would bang his forehead on the floor, wall or any other surface but only when he was angry or frustrated. He would try to make himself cry in order to manipulate me into getting what he wanted so I saw that as something all kids do and not a sign of autism. He didn’t rock, spin or flap. He didn’t finger posture, his eye contact wasn’t horrible (but it wasn’t great, either) and he wasn’t rigid or routined. The stims he had seemed so minor and he certainly seemed to me (at the time) that his symptoms were “lesser” symptoms. Knowing what I know now, there is no such thing as “lesser” symptoms but hey, we all live and learn. He would stare at ceiling fans, blinds, put things up to the corner of his eye and stare down the line, speak in jargon, hold wheels up to his eyes, spin wheels on cars, line up toys, felt no pain, no concept of hot or cold and he had such high proprioceptive needs it was insane. He starting jumping constantly, I kid you not, at about 4 months old.  He would sit in his jumper and jump, jump, jump till the cows came home. We initially didn’t like for him to be in his jumper for too long because all those lovely parenting books like to tell you how they shouldn’t be in an entertainer for too long but rather should have plenty of interaction. Well after a while of doing nothing but holding him while he jumped in our laps our arms were too tired to keep up with that bit of advice and into the jumper he went. His vestibular system was completely out of whack. He never felt like he was moving and he was constantly searching for that feeling. My parents and grandmother noticed that he didn’t smile much. This was something that I never noticed as he seemed to smile and laugh with me all the time. But then I realized that in comparison to other typical children it just wasn’t the same. What very few words he had disappeared before he even started RC services. I hadn’t even noticed. I asked myself over and over, “When did that happen?”
 
He didn’t start his services until just under 2.5 years old and at that point we knew for sure there was something wrong we just didn’t know what. But as the days went on to weeks in Early Intervention I knew it was autism. They had given me a CARS worksheet and a copy of the DSMIV criteria. He scored right on the borderline between moderate to severe on CARS and as I went through and wrote all of his “symptoms” right next to each category, I totaled them up only to discover, yup, he qualifies for the diagnosis.
 
I accepted it immediately and went to work on figuring out what was next. My husband, on the other hand, had a much harder time accepting it. He never fully accepted it until we had our RC Psych eval at 3 years old. Once he got that diagnosis from the RC he had a difficult time coming to terms with it and it took him over a year to fully come to a place of acceptance and even out his emotions. It was a hard transition for both us to adjust to the news and how we both handled our reactions and our reactions to each others’ reactions. He would seem to get mad at me for having such an “easy” time accepting it and I would get mad at him for having such a “hard” time accepting it when he was the one with the suspicions in the first place. The truth is, it wasn’t easy for either of us and we simply handled it differently. He’s more emotional and I’m more pragmatic. He would dwell on the fact that this was his worst nightmare and I would set out to learn what to do about this nightmare. The clash of the two polar opposite personalities wasn’t easy to navigate.
 
Our beautiful and happy new baby, Tynan, had arrived and we were finally able to move back into our house after 6 months of living in our driveway. Somewhere along the line of deciding to remodel our house we had made the decision to do the finish work ourselves. Really dumb. It was bad enough that we got Gryffin’s diagnosis after our house was torn down (something we would never have done had we known beforehand) but now we were moving back into a house with no kitchen, no floors and just barely had insulation and drywall. We made a temporary kitchen while we waited for our cabinets to be built and pulled out our much too expensive appliances that we bought before we knew our son was going to need a lot of therapy that costs a lot of money. We painted the bare drywall and slowly put our house together as best we could but we knew our progress would be a lot slower than we had originally anticipated since our funds were now being split into several different directions.
 
That didn’t help our situation any. The financial strain, the emotional strain and just trying to get through it all was heinous on both of us. I was constantly searching for signs in Tynan and it was driving my husband nuts. I felt relatively comfortable that my son was typical but I also didn’t trust that feeling since I obviously didn’t hit the mark with Gryffin. I felt like I must be missing some mommy gene that controls mommy intuition and I didn’t have a full set. I could handle kissing the owies, loving and caring for my children, playing and hugging but when it comes to something as serious as knowing when something was wrong I was lacking some intuitive connection with my kids. Why was I not connecting? Did that mean I wasn’t truly bonding? What kind of mother could I possibly be if I don’t have the intuition to know if my kids aren’t okay? So I watched him like a hawk. It was the only thing I knew how to do. Before Gryffin graduated out of Early Intervention I had them evaluate Tynan. He had one thing that I thought was incredibly odd and was terrified that if I didn’t act I could lose precious time like I did with Gryffin. He would throw himself upside down in your arms and wanted to be upside down all the time. I felt a huge weight taken off my shoulders after the evaluation came back at age level or better. I felt like maybe I could trust myself a little now. I finally let it go with him but I don’t think you ever stop looking.  I did manage to stop stressing. My husband was thankful that I was able to stop worrying about Tynan as it didn’t help him to get through his feelings with Gryffin at all. It just added more to the weight he was carrying.
 
But we made it through. We have come out on the other side as a team working to recover our child and raise our children as best we can. As I worked through all the biomedical interventions my husband slowly starting wanting to know more and more. He had always been supportive of my efforts with Gryffin but just wanted me to fly the plane while he sat in the passenger seat and worked his fingers to the bone to pay for the fuel. He didn’t complain about the cost or the effort although sometimes he did fell I was “obsessed”. I’ll admit I was and I still am obsessed. I research constantly. As time has passed, so has his passenger status. He is now becoming closer and closer to being my co-pilot and the love and appreciation I feel for his efforts is immeasurable. He won’t get full co-pilot status until he knows what meds and supplements Gryffin is on, when he takes them and why takes them but he’s getting there. Until then he will remain a “co-pilot in training” and I will continue to write a schedule down on a piece of paper and be grateful that he is involved and more importantly, wants to be involved.
 
Through this blog, I hope to help others navigate through the web of autism and all that it entails. Everything from biomedical interventions, therapies, politics, vaccines and IEP’s. From birthday parties to sleepovers.
 
By the way, my house still isn’t finished but we’re getting there. You may read posts occasionally on the progress of my house – assuming we don’t ever lose it. We still have a hard time financially but we manage to pull through. You may read posts on Tynan. You may read posts on just about anything. But my goal is to help others, especially those who are new to an autism diagnosis that have an interest in trying to recover their children through biomedical intervention. Gryffin is doing well and recovering every day. He’s not fully recovered but he’s getting there.
 
Gryffin’s Tail is Gryffin’s tale. His tail is broken but he is not. We will tend to his tail and with time it will mend. It may have a kink or two but don’t we all?
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4 Comments (+add yours?)

  1. The Belgaied
    Jul 23, 2008 @ 07:56:00

    Hi Cheryl, this is Tara Belgaied, Waleed’s mom. I just read your blog and I identify so much with your story. I have seen some exciting progress in Waleed since starting his diet and taking the homeopathic supplements. Much less spinning and screaming, and even some 4 word requests. The best part is he wants to go play at his friend’s house, by himself! Thank you for your story. I’ll continue to share mine. Tara

    Reply

  2. The Cult of Recovery
    Jul 27, 2008 @ 13:41:00

    Hi Cheryl, I just clicked the link on the Yahoo group and read your blog. Man, I could have written a very similar story about Ruby, my 3 year old.I laughed at the part about your husband and biomeds. It’s the same in this house, I am the leader, he is the supporter. He works to pay for the treatments, doctors, etc. I do the constant research. He makes fun of me because I am ALWAYS researching, he tells me to do something fun online while the kids are in bed. I can’t!I have a 10 month old and watch her like a hawk too. So far she is completely typical and unvaccinated. I just might be homeschooling because I will not vaccinate until something changes.I’m glad I found your blog, I’m going to subscribe to your feed.Michelle

    Reply

  3. Anonymous
    Jul 28, 2008 @ 20:44:00

    Hi Cheryl,Your blog is wonderful, as is the store. I have been listening to you on 2 yahoo groups for almost a year now and appreciate your steady pragmatic stances, always always helpful. You are giving me and all the rest of us autism parents clarity and hope.(in addition to so much education).Thank you so very much for all of this, your efforts, your blog, your store, your sanity.My 8 year old is a long ways from recovered but we are trying everything and we have hope.Jane

    Reply

  4. Anonymous
    Aug 17, 2008 @ 22:21:00

    Hi Cheryl, I have been reading your posts on the Yahoo groups for more than a year now. You are one of my favorite people and I have learned so much from you and your posts. I have tried many things for my son who is very much recovered after two years of complete craziness because of you. I was so glad tonight to see your blog link as I too have been on vacation and am just getting back to the work of recovery. Good luck with everything. Robin

    Reply

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