Spectrum Warriors: Life Through The Autism Spectrum

The Journey – Rebecca

When my daughter MJ, as we call her for short, was born we knew within a few days thatMJ and Daddy we didn’t get the “easy baby.” Poor suckling, and constant screaming/arching, and vomiting and a case of jaundice had her re-admitted within a few days of us being sent home from the hospital. After 48 hours we were kicked free, but life didn’t improve.

MJ kept puking and losing weight, no matter what I did (and I was breastfeeding.) Within two weeks, the doctors had diagnosed her with severe acid reflux and we began a trial of medicines. While the first medicine, Ranitidine (Zantac) helped some, it didn’t help enough. She still vomited and still did not gain enough weight. They moved her onto something stronger – Prevacid, and again that helped some, but she still cried all the time, arched constantly and still vomited.

The doctor then suggested I remove dairy from my diet, which also helped – but again, not enough. At this point, Meredith had dropped to under the 10th percentile in weight (she started at the 25th when she born) so I took matters into my own hands and started researching. I discovered that besides lactose, someone could be intolerant to milk proteins themselves and that some people had a condition called MSPI – Milk, Soy, Protein Intolerance. I started keeping a food diary and removed soy, which was not an easy process. Soy has many, many names that can easily be missed by exhausted eyes.  MJ was also diagnosed with colic, meaning she cried at least three nights a week for four hours or more at a time (try five nights!)

By four months of age we started her on solids (at our doctor’s advice) along with breast milk, yet that didn’t seem to help either and the doctors began sendMJ Sandifer exampleing her for all kinds of tests. They could find no hernias, no pyloric stenosis and couldn’t figure out why she kept puking and why she kept losing weight. By six months old and she had dropped to the second percentile in weight and was declared a failure to thrive. She was also diagnosed with Sandifer Syndrome as a result of her GERD, which is basically extreme twisting/rigidity of her neck to one side from the reflux. That required physical therapy and an increase in the dosage of her Prevacid.

Life in our house was not easy. I felt like a failure as a parent.

Through my food log, I kept track of her symptoms, and with the help of a dietician, we discovered several other food items that were causing problems – and there were a lot of them! Anything citrusy, anything gassy (beans, legumes, etc.) I removed all of these items from my diet since I was still breast feeding and although the doctors swore it wouldn’t help, it did. She began to keep food down and grow. The doctors said she was simply outgrowing things and it wasn’t the removal of foods. I tested – they were wrong. Any time I added something from the offending foods back into my diet, she would start throwing up. Looking back on things now, this was clearly the first of many red flags, but little did we know.

There were other things too. When we were out in public MJ was the world’s happiest baby: anyone could hold her, she never cried. But the moment we would come home and close the door, she would start to scream and she would cry for hours. Sometimes to save our sanity, we would turn right back around and go back out. I now understand that was another red flag – especially with girls on the spectrum. The crying was a result from the over-stimulation. Going out was the cause of our problem, but how were we to know?

Over the next year, I continued with her strict diet, cooking everything from scratch because processed foods really don’t have proper labeling. She continued to grow and thrive – which made my husband and I so happy – but she continued to cry and continued to have sleep issues.

When I say sleep issues, I mean she didn’t sleep through the night for the first time until she was 14 months old and our GI specialist added Domperidone to her medicine regime. The first time she slept through the night, I didn’t sleep, I was like a brand-new parent checking to see if a newborn was breathing every five minutes. She slept in a special mattress designed for children with GERD. We did everything we could think of and yet she still didn’t sleep and it seemed like it wasn’t only the reflux. She loved waking up at 3 am to play, bright eyed and bushy tailed… or would stay up until midnight. We tried every sleep training tactic and book and nothing worked.

The food, reflux and sleep issues overshadowed other things – like her sensory issues. You see, MJ had a hard time with loud noises, she hated the vacuum, had an obscene love of fleece, hated stuffed animals with a passion and was known as the barefoot contessa because she never wanted to wear socks. Her daycare provider noted all the same issues and more: her food had to be certain temperatures, she hated baths and would scream bloody murder and spend her time wiping every drip off the tub if she splashed. She was also very OCD about things. If a rug wasn’t straight, she had to straighten it. She cried if we changed her cup.  And she loved spinning and walking on her toes.

She started talking early and had a growing list of words – but at 18 months, she suddenly regressed, began talking less and lost words. Our doctors had her hearing tested and we enrolled in programs for late talkers. Her hearing tests showed she had ultra sensitive hearing, and we worked harder with her on her speech. A few months later she not only turned a corner but leaped ahead. She went from being delayed to advanced overnight – skipping a bunch of the basics. Again, another flag we didn’t realize at the time. Much of her programming right now consists on going back to teach some of the basics for many skills – it was summed up to us as “she built the house, but forgot the foundation.”

mj 4She was a climber, no desire to sit in her stroller – ever. She got into everything, and with her sleep issues we had to move her to a big girl bed at 18 months because she decided to give up naps. I walked in her room one day and found her climbing out of her crib, head inches from the floor. Of course, moving her made things worse – now she could get out of bed. She wasn’t tantruming or looking for attention, she just couldn’t go to sleep. We removed everything from her room, added locks on her closet and dresser, and even locked her in her room until she was fast asleep (usually midnight or 1 am) with those special door handles.  We complained to the doctors for months – they told us she would outgrow it and we were just first-time parents. But I knew in my gut there was something else.

Eventually the pediatrician referred us to an occupational therapist for monitoring of her sensory “quirks.” They followed us for a year and kept saying, it’s not time to worry yet… Our occupational therapist was fantastic, and she helped us with tips and tricks and explained social stories and visual schedules. I started researching, started using them and it made a difference – the more we read, the more my husband and I were convinced that there was a diagnosis of either sensory processing disorder or Asperger’s in her future.

Everyone we met told us we were looking for things that weren’t there, she was so good in public, and so advanced. Sure she didn’t really like playing with other kids her age, but she was young, she went to a home-based daycare, etc. The list went on and we were made to feel like we were terrible parents for thinking there was something else going on. My husband agreed with me but he’s not much of a head-on conflict kind of guy. So I kept pushing. I started videotaping things and showing them to doctors. Slowly people started seeing and believing and not being able to write things off anymore as the overactive imagination of first-time parents. They would comment, “Hmm, that’s not normal.” We’d answer with: “Well, that’s our normal and this is what we’ve been trying to tell you.”

We were constantly told she’d outgrow her reflux and the gagging/throwing up over textures was her being a picky eater, a fussy baby.  And although she’s better than she was, she’s nearly five and hasn’t outgrown it at all. In fact, after receiving her diagnosis, I began reading  up on diets and learned how much diet can affect children on the spectrum. In fact, many children benefit from specialized diets, like gluten and dairy free (MJ’s diet among other things  is dairy and soy free). We had eliminated so many foods and as it was she could barely tolerate protein of any kind, that pasta was about the one thing we could get her to eat without problem, so we left gluten in. While we try to limit her gluten intake (rice pasta etc.), at this point I can’t remove gluten from the diet of my pasta monster – a name she picked herself – but I have a goal of trying once she can tolerate more foods.

One day, our occupational therapist said the words that we’d longed, yet were dreading to hear. “She’s not outgrowing these quirks, and in fact, her rigidities are getting worse. I think we’re there now. It’s time to get a diagnosis.”

We started the lengthy referral process and a after a few months of waiting began the assessment process with a child psychologist. During this time, we didn’t have a tremendous amount of support, because MJ was so good at hiding her anxieties and behaviours in public. We recognized it was hard for people to see, but at times it felt like we were alone in the world.

After receiving the diagnosis, our psychologist told us he had pretty much known after only our first meeting that he’d be diagnosing MJ with Asperger’s. She didn’t have a meltdown during that session – in fact she showed up dressed in her best princess outfit and was completely charming –  although he could see a few anxiety ticks and quirks, not common in kids her age. It was an incident that occurred as we were leaving that he picked up on, something so normal for us, we didn’t even realize that it was a flag. She asked for a drink and as we gave it to her, she proceeded to do as she normally did – chug it without stopping or taking a breath. We had to physically stop her and remind her to take a break and breathe, He began quizzing us on this and we explained that this happened all the time. It was this inability to self-regulate something so basic, like being able to know not to chug drinks in one sitting and to remember to breathe that he picked up on. To this day, that is still a pattern she’ll often fall back into when she’s having a bad day.

We got her diagnosis at three-and-a-half-years old, and when we got it, I felt elated: it meant I wasn’t crazy! There had been something there all along and we could now finally get the help and support she needed. I knew from all my reading that the earlier intervention started, the better the chances children with ASD had at learning coping skills so they could integrate with the neuro-typical society.  About a week after her diagnosis, I was alone at home and said the words out loud to myself. My daughter has Asperger’s. It was then I realized I had tears streaming down my face. After my cry, I made a decision. I could wallow in self-pity or I could embrace her diagnosis.

I chose to embrace and celebrate her Asperger’s diagnosis. Yes, my daughter has Autism. Yes, she is different. Yes, she has challenges coping with even the smallest change in day-to-day life (like leaving the house from the garage door instead of the front door). We can’t just decide to go to the mall on a whim – there are too many people and every outing has to be carefully planned. Life is hard work in our house, a careful balance that requires schedules, planning and a lot of consistency. But I’m ok with that – you know why? It’s because Asperger’s is not what defines my daughter; it is just a part of her, no different than the colour of her hair or her eyes. The way she looks at a situation often amazes me. She has an entirely different perspective on life and some days, I think she teaches me more than I teach her.

mj andmom

5 Comments

  1. My son Stephen is 7 and he started exploring new textures a month before his 7th birthday. Stephen had GERD since birth, failure to thrive and extreme feeding difficulties (purees only up to age 6 (almost 7.) We went through 6 years of weekly feeding therapies. We needed the support. At one time I spent literally 8 hours a day feeding him just to keep weight on. The hardest part was being patient. Now he explores new foods just by setting them out at his place on the table (not pushing him to try, letting him initiate.) In the past we would encourage him to start by touching, progress to licking (or touching to the lips), and then trying a bite (with lots of encouragement and praise.) I can relate to both Rebecca and Sabrina’s stories.Stephen is on a restricted diet – gluten free, restricted egg and dairy. He has been on this diet for 5 years now.

    Stephen was first diagnosed with GERD soon after birth, then Infantile Spasms (seizure disorder) at 5 months, Cortical Vision Impairment at 8 months (legally blind), autism at 18 months, unilateral hearing loss (legally deaf) at 2 1/2, and epilepsy at age 4.

    I believe strongly in special diets to help resolve feeding difficulties. Who would want to eat if they feel sick every time they do? Stephen suffered from alternating constipation and diarrhea and gas pain. The diet has helped tremendously.

    As far as pasta goes – there are new gluten free pastas that are much better than the ones we tried last year. Ronzoni gluten free spaghetti is our favorite. We aslo like ancient harvest quinoa mac and cheese. I wasn’t always happy with the texture of rice pasta (didn’t have the same feel as the real deal.) I like the corn pastas for soups (they don’t turn to mush.)

    I plan to post more on this topic on my blog (as soon as things settle down a bit on the home front – wish me luck – lol.) It was great to get to know more about your families. I look forward to reading more!

    • Thanks for your comment Julie. Sounds like you’ve had quite the journey. We are not gluten free, but we are gluten limited. It doesn’t seem to affect her the way dairy or soy does. Plus she has a corn sensitivity and is not a fan of the textures for some of the alternatives – like rice. We’re getting there though, baby steps. I will be definitely spending some more time reading your posts since some of your feeding challenges sound like a page out of our book.

      • I think what you said here is key – keeping track of eating habits and knowing which foods affect each individual child. In our case there was genetic predisposition to Inflamitory Bowel Disease (specifically Celiac.) Each child is different. Our son wasn’t a fan of rice either. When increasing texture I’ve found picking your child’s favorite foods (and flavors) is most helpful. Our son loved pureed “sandwiches” meaning deli meat, lettuce, tomato and some mustard for flavor. We also used rice crispies for a low cost grain to add to the mixture and we pureed the mixture in a bullet (mini food processor.) Surprisingly and not so surprisingly our son’s first solid food (after feeding difficulty) was garden fresh tomatoes. The texture is something most children with feeding difficult would be adverse to. So again the issues you have identified are key to finding what will work best! Thank-you for reading my new blog and I look forward to blogging with you in the future! It’s great to connect with others who have had similar obstacles to overcome!

      • I think you also touched on something. Every child is different – and while they may be linked with their autism, their challenges are all different and every method or therapy needs to be adapted to their needs, styles and preferences. Looking forward to reading more on your blog.

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