This post contains material which may be objectionable to some readers.
When Isaac was about 6 months old, a woman at church who worked for Early Intervention (EI) noticed some things about Isaac.
He wasn’t making eye contact with anyone who held him, and he had poor muscle tone throughout his body.
We brought these concerns up to our doctor, but she just waved our concerns aside and said Isaac must be a late bloomer.
Even when Isaac never tried to hold his bottle (there’s that muscle tone thing again, being able to lift and hold his arms up), never tried to put anything in his mouth, and he never babbled, and other milestones he was missing, the doctor still didn’t take us seriously.
Her motto was to just keep waiting.
We were, however, referred up to
Portland.
At 6 months Isaac had his first trip to Doernbecher’s to receive testing for any genetic disorders that might explain his delays. It was the Christmas season and Santa happened to be there visiting the children. Isaac was able to sit on Santa’s lap for the first time, and even received a blanket, the same ducky blanket that has been his favorite and is still on his bed today. Fortunately the tests that Doernbecher’s did showed no genetic causes for Isaac’s delays.
With help from the woman at church and also from the “cocoon nurse” who would stop by our home occasionally, we eventually began services with Early Intervention. The cocoon nurse would come and give me advice about Isaac’s poor suck and chew reflexes, as well as his poor muscle tone. We had EI teachers come into our home numerous times to do tests and to help give advice and suggestions, such as helping to strengthen his torso to help him sit upright, and arms to help him crawl. These are the people who introduced us to baby American Sign Language, since Isaac didn’t yet babble. For a very short time he blew raspberries, but that was it.
I was at first skeptical about baby ASL. I couldn’t see how an infant could grasp something like that. But because I had always wanted to learn ASL, and we were desperate for our son to start communicating with us, we began teaching Isaac a few basic signs using an amazing book. The very first ASL sign Isaac learned was “cookie”, and that’s when I realized he just needed to be properly motivated and he could do this!
Isaac at age 9 months
At about age 9 months Isaac had his first hospital stay. He was extremely dehydrated with diarrhea and vomiting, and after 3 consecutive days of going to the doctor they finally admitted him. He was in the hospital also for about 3 days. It was so rough for Isaac, and frightening for me. The doctor was surprised at how much fluid Isaac needed, because the he hadn’t even realized just how sick Isaac was. It was the week from hell, and I fell behind in my studies and eventually had to retake some classes, but it was a relief to have a healthy child again.
At age 11 months Isaac was totally immersed in the Early Intervention system. In addition to home visits, we also went to the EI school once a week for about an hour. While there we were able to work with physical, occupational, and speech therapists. They worked with building core muscle strength to try to help Isaac begin walking. They did sensory activities such as using cool whip or shaving cream on mirrors, and exposing the kids to different textures. Even with all this, I still felt we were missing something and that these class times seemed mostly open play time instead of structured therapy. I knew they were understaffed and budgets were constantly being cut, and I believe that played a large role in the quality of therapy Isaac received. I was especially frustrated with the speech therapist services. That mainly involved them giving me a handout of beginning sounds to work with Isaac on. What in the world did they think we had been doing?! They weren’t telling me anything different from what we were already doing and trying at home. They did recommend a large mirror to use with Isaac when working with sounds, but he showed little interest in it.
I continued to make trips to OHSU for check-ups and to see how my recovery was progressing. I still experienced pain, especially when sitting on hard surfaces like the floor, but I had made improvement. I had chosen a different doctor from Kate to deal with my medication, and I had also chosen a counselor. I went through LDS services for the counseling, because of the nature of what I was going through I wanted to talk to someone who understood my basic beliefs and religious background. It was a slow process but I started to do much better. I had been losing weight after joining Weight Watchers. The counseling helped me to start working through things, and after a time I felt I didn’t need it anymore. The biggest improvement I made was just before Isaac’s first birthday, thanks to the medical care I had received at OHSU, Daniel and I were able to be intimate again for the first time since Isaac’s birth. I was so happy I cried. There are rare times in life when you feel such pure joy, and that was one of those times for me.
Isaac's 1st Birthday
Isaac celebrated his first birthday. We had it at the big park with family and friends. Isaac was still having chewing issues and didn’t dig into his food like other tots his age. My in-law siblings took it upon themselves to smear my son with his chocolate cake. The entire mess wasn’t Isaac’s doing, but the work of my husband’s adult siblings.
In Boise: Me with Isaac, Dad and Patti
Soon we went on our first plane ride as a family out to Boise to visit my dad and stepmom. Every night, all night, Isaac cried and fussed. This was the beginning of a pattern where Isaac showed a rigidness that he couldn’t sleep anywhere other than at home in his bed.
He's walking!!!!!
We continued the work with EI. Isaac took his first steps at about 14 months! I remember we were at home in the kitchen, and he was showing an interest in the garbage can. I moved it out of the way, he pulled himself up and toddled to the garbage can! It was an exciting day. He also made more progress with his ASL, slowly adding more signs. He had had two hearing tests up to this point, one came back fine and the other inconclusive.
The first haircut
Isaac had his first haircut at about age 18 months. We took him into the local hair salon and I sat him on my lap. He cried and screamed the entire time, and we were told if we couldn’t calm our child they would ask us to leave. At that time we didn’t know he had autism, so I was just offended because what was I supposed to do? That was the last time we ever took him into any salon of any kind for a haircut. This was the beginning of us realizing he had sensory issues with haircuts. I ended up doing haircuts at home (we used the term “hair trims” so it doesn’t sound as scary), and when he was little I’d strap him into his high chair and I’d have to use scissors and give him a very rough haircut. As he got older I needed Daniel’s help to hold him and restrain him. By the age of 2 it was so bad that one time I nipped him with the scissors and decided at that point we were going with the buzzers. I had been avoiding the buzzers because of the noise, and I was afraid that if the scissors freaked him out how he would react to buzzers going over his whole head. But it went much faster than the scissors, looked much better, and by doing the haircuts in the living room with a movie going we were able to endure the screaming better.
As Isaac was becoming more mobile, we noticed he was displaying strange behaviors. He would bang his head on the bathroom shower door and on the living room walls. Sometimes even the floor. In the car if he had a meltdown he’d throw himself forward and then back really hard, slamming his head against the back of his car seat. He was sensitive to textures, such as he couldn’t stand the feel of sand and we could not get him to wear denim without screaming. Overalls of any material, anything that went over his shoulders like that, was also out. He couldn’t stand anything sticky touching his skin, or even dirt on his skin or clothes. Our doctor continued to brush our concerns aside. On one hand I understand that doctors don’t want to misdiagnose at a young age, but on the other hand our son had a long history of delays and it would have been nice if she had even suggested that autism might be a possibility. My mom was a lifesaver and would come about once a week to pick Isaac up to play at her house. This gave me a break from his screaming and meltdown fits, and allowed me to work on my studies.
Soon before Isaac’s 2nd birthday we moved from Salem to Corvallis to save on Daniel’s commuting cost. I cried and cried. Salem was where all our friends and family were. I needed that support while going through these struggles with Isaac. To make matters worse, the cost of living was higher in Corvallis so we were moving from our cute apartment to an eyesore apartment. I did not want to move. With help from the cocoon nurse she gave me the name of a fantastic pediatrician she knew in Corvallis who she said would listen to our concerns about Isaac. The move to Corvallis turned out to be a huge blessing. We moved and turned that ugly place into a home. We immediately got Isaac involved in EI in Corvallis.
After Isaac’s second birthday he still wasn’t talking.
Another thing about Isaac is that he’s never really cried. Tears come out, but it was while he was having a screaming meltdown. As he’s gotten older rather than crying, the tears come out and he rubs them off really hard, and his eyes get real big and he opens and closes his mouth really big, so you can tell he’s obviously really upset about something. But he never really cries. It’s heartbreaking. We also found that he had a difficult time regulating his emotions. He might start out laughing, but it would quickly lead to a screaming meltdown. Other things that caused meltdowns were going to a new store. Or even a high-stimuli store like Jo-Ann’s Fabric store was a guaranteed place for a meltdown.
Our Corvallis pediatrician did listen to us, and I can’t even express the relief we felt to finally have someone who took our concerns seriously. The doctor ordered a brain scan to make sure there wasn’t something going on there that the tests at Doernbecher’s had missed. Those tests came back normal also.
We decided to take our first camping trip when Isaac was two. We were so excited! We drove out to a great place that was a couple hours drive away. We had a great day and set up camp and had just a great time. We even saw Sea Lion Caves, which was a pricey special treat. Things were great until it was bedtime. Again we had the issue of Isaac screaming (now we know because he wasn’t in his room in his bed). It was terrible. We were disturbing other campers around us, and it was just miserable because the screaming wouldn’t stop. Finally it was late and we packed up camp in the dark using our flashlights, and headed for home. We got home in the wee hours of the morning. Since then we have not had Isaac spending any nights other than at home in his bed. It would be so nice to be able to go camping, but the idea of repeating that episode is so terrible that we just haven’t been able to bring ourselves to try it again.
One day at EI I asked them to do an evaluation on Isaac for autism. The teacher was skeptical, but they went ahead with the evaluation which included their autism expert. Even though I suspected it, when they told me Isaac did fit on the autism spectrum it was like a blow. This educational diagnosis, the diagnosis that determines the kind of aid he gets in the school system, began to open doors.
Isaac at age 2 1/2
Our pediatrician referred us to CDRC in Eugene since it was closer to us now than Doernbecher’s was in Portland. Isaac was 2 ½ when we finally had the appointment. It was nearly an all-day event with every specialist you could imagine, and he even had a third hearing test. When it was over, we had the medical diagnosis of PDD-NOS which is on the autism spectrum. It’s fancy talk for meaning that he wasn’t as severe as a straight autism diagnosis on the spectrum, but he was more severe than Asperger’s. This medical diagnosis opened doors for us for the kind of medical therapy Isaac could receive and was also a boost to the educational diagnosis since the medical diagnosis holds more weight. The people there were great, but it was hard to see my son scream when the doctor tried to touch him or not respond when another therapist tried to interact with him. But the whole meeting was very politically correct, using all the PC terms. Later we received the print out of the paperwork in the mail. As I was reading through it, I saw they used the term “mental retardation”. It was like ice went through my veins. I was devastated. When I stopped crying, I called CDRC and asked them about it and why we hadn’t been told about this when we were there. They apologized for not telling us, and their excuse was that they rarely use that term anymore, since the PC term is now “cognitive delays”. I had heard that many times, but to be told my child may have mental retardation was such a low blow. I’m sure part of it is the stigma around the term “retarded” and all the ideas that word brings up.
Everyone handles trials differently. For me, I experienced extreme grief over this diagnosis, the autism and the “cognitive delays”. It was the death of a dream and hope of a normal child, going through the normal experiences of life. It was real true grief. Nothing had been easy since the day I conceived, and now we knew there would be no end to the trials we would continue to endure. As terrible as it sounds, I felt that parents who had lost a child had it easier than I did. With them, they had closure. For me, I would never have closure. I grieved painfully, but I still had a child I had to care for every single day. It was unfair. I was very angry at God. I didn’t understand why this was happening to me, to us.
My depression came back horribly. I had been off of the antidepressant medication for about a year, and now I had to go back on them, but using a stronger medication. I gained weight… all that I had lost plus more. I began seeing a counselor again. She felt I needed to talk to their psychologist, so I was put on the waiting list. When I finally saw her, we went over my history, especially all that had happened since my pregnancy. I was diagnosed with obsessive-compulsive disorder (OCD) and post-traumatic stress disorder (PTSD), both from the trauma from Isaac’s birth. Every single day since Isaac was born, when he sleeps I go in and check to make sure he’s still breathing. I still do this. I check on him before going to bed at night and if or when I’m up during the night I also check on him. Physically, I still experienced pain and discomfort down there. I was put on a medication that really did help and it was recommended that I continue counseling. Soon after that though, I received a bill in the mail of all my counseling appointments to that point and the balance I owed after insurance. The balance was in the hundreds and hundreds of dollars (nearly to $1000)! I had to stop counseling because I couldn’t afford it. I had finally found the help I needed and that was working, and I couldn’t continue. I was fortunate that the medication I was put on was affordable, and I was able to continue it.
Isaac did well in EI, but school breaks were extremely difficult. When he was 3 and EI started up again in the fall, he was able to attend teacher Bryan’s class. His class was a structured class for autistic children, and I had heard only fantastic praises from other parents who had had children in his class.
We also started private speech, physical, and occupational therapy. We did speech therapy since Isaac still wasn’t talking. We did physical therapy to build strength in his muscles, to help him walk without wobbling and to run without falling or having his legs kick out to the side as he ran. The occupational therapy was to help with sensory issues, and we mainly did this using a brushing technique and deep compression. This method was intensive, since we had to repeat it every 2 hours. But when I did it in the midst of one of Isaac’s meltdowns, and it calmed him down, the time was worth it. All the therapies were extremely overwhelming and taxing for me at times, and one time I embarrassed myself by breaking down and crying in front of the occupational therapist. Small (or to us, big) steps in progress kept us going, like the day Isaac finally wore denim was a big deal.
We tried Isaac on a gluten-free casein-free diet, hoping it would help reduce his violent outbursts against himself and also us. Not only was it an extremely expensive diet, but Isaac also became very ill while on it, missing weeks of school. I talked to his occupational therapist about it since she was familiar with the diet, and she said Isaac may have a vitamin deficiency and that’s why he became so sick on the diet. The only way to tell was for Isaac’s doctor to do tests, but I didn’t want them sticking my son with needles for no good reason. So we simply pulled Isaac off the GFCF diet.
Isaac blossomed in teacher Bryan’s class. He had learned over 100 ASL signs, so I had made a binder with all his signs in it for the teachers. Each time Isaac learned a new sign I would bring it in to the teachers to add to his ASL binder. That fall we also moved to our current residence. By that time we had been introduced to the wonderful inventions of social stories and PECS cards, so Isaac handled the transition much smoother than if we had not used them.
Summer came and so the EI classes ended, but we continued his private therapies. Isaac continued to have chewing and swallowing problems, such as choking on water and not properly chewing his food or cramming his mouth which caused choking hazards. In hindsight I could see that this was an issue we’ve had since his birth. We saw another occupational therapist at the clinic and began feeding therapy. I would pack Isaac’s lunch and he would eat there. The OT used a mirror so Isaac could see himself chew and see himself mimic the OT’s mouth movements. She also used small foam pads on sticks and Isaac had to do tongue and mouth exercises. These also helped with the sensory issue that was causing him to cram food in his mouth when he wasn’t aware of what was in there to begin with. By the end of the summer, not only was he chewing and swallowing better but he also began to talk! He had been 3 when he said “Momma” for the first time, but there is no sweeter thing in the world than to hear your 4 year old say “I love you” (or something close to it) for the first time!
That first day back to school he absolutely floored all the teachers and therapists. The school’s OT was speechless! I was so proud it was hard not to cry when they expressed their pleasure and surprise at Isaac’s speech. The OT told me he was like a different child (and he should, since having speech allowed him to communicate his wants and needs, so less meltdowns). The ST told me Isaac was like a poster child for the EI program. He had achieved what everyone there works so hard to help every child achieve. She asked what happened to cause the speech, and I told her about the feeding therapy. She was surprised and told us that studies had shown no relation between feeding therapy and speech. I told her that in our case that’s what it was.
Daniel and I had both graduated by this time, which was fortunate since Isaac’s therapies consumed so much of my time. Between EI and private therapies, I was spending about 3 hours every day driving to and from appointments.
I give more of the credit for Isaac’s progress to the EI teachers and the private therapists. Of course I continued the work at home, and kept Daniel up-to-date, but without those people I know Isaac’s progress would have taken an entirely different path.
In June 2008 Isaac graduated from the EI program. Since he was turning 5 that summer, it was time to enter the public school system as a kindergartener. Isaac has done great in his class! It’s a structured class so many of the kids are older, up to 2nd grade. It’s been wonderful having the teachers helping with the big potty training issue. It’s also been wonderful for Isaac to be around his peers, and having them use the potty has been an incentive for him to also. He’s been doing great in his speech therapy class at school, and all the teachers adore him. His speech still isn’t always clear, and I often have to translate for Daniel and other family members, but the progress he’s made has been incredible. He has basically forgotten his ASL signs, but he still enjoys counting and doing the alphabet in ASL. His meltdowns are rare, and usually there’s a trigger for them that’s easy to identify like something happening at school or Isaac and Daniel butting heads. He hasn’t hit himself in the head in quite a while now. He was chewing on his wrists for a time, but that nervous habit stopped and now when he’s nervous he scrapes his fingers (lightly) across his head. He also still spins and shakes his head, and at times toe walks, but I usually allow these behaviors since he’s not harming anyone.
We don’t know what the future holds, but I expect it to be great things. This summer we’ll be working on spitting. Isaac doesn’t know how to spit, even to brush his teeth, so he’s still using toddler training toothpaste. With the warm weather this summer I plan to spend some time outside each day having him practice spitting. I hope with that added skill of control over his mouth and tongue that his speech will continue to improve, and for next year they’re talking about putting him in a mainstream first grade reading class.
For my health, having Isaac make such drastic improvements has improved my health and well being. The injuries I received at Isaac’s birth got better, but never 100% healed. Sitting on the floor was painful until Isaac was about 4 years old, and after that I felt occasional discomfort or pain at times, especially when Mother Nature made her monthly visit. I never pursued a lawsuit against the doctors or hospital. I think people who are sue-happy are the lowest of the low, and since we had great insurance that covered most of the medical expenses I didn’t see the need. Besides, no amount of money in the bank was going to make what happened, un-happen.
The damage was done and the important thing has been learning to endure and then move on with life.
Isaac, 2009
Isaac has a difficult time understanding death and the separation of spirit from body... Over a year ago his pet Brown Rat had died after we'd had him for about 3 years. Isaac still talks about Brown Rat. We've been telling Isaac that now Brown Rat and Jerry are in heaven together and probably tickling Jesus with their whiskers. Poor kiddo. We still have Tom and Stinky Fish, and after they're gone I think it'll be a while before we do more pets. We'll see.
