In the Trenches of our War Zone!

In the Trenches of our War Zone!

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diana spdThat title can be quite intimidating for anyone to really grasp, and perhaps we’re not in the line of fire, but I can’t give a more complex meaning to what it is like to be a mother of 3 special needs children than that.

Recent studies published show the mother of an autistic child has a stress level with comparison to a post war veteran. Parents are desperate for help! Desperate and fighting for understanding, acceptance, awareness, love, social skills, communication, respite, wandering prevention, research, emergency services training, medical and dental training, play groups, support groups, bullying prevention, school support rather than a lack of, advocacy, therapy, adequate school funding, potty training success, higher graduation rates, disability dogs, more accessible Gluten-Free – Casein-Free {GFCF foods} in stores and in restaurants, adaptive devices, and friends.

Although we have seen great strides since the advocating of previous generations, America still hasn’t quite come to terms with the seriousness of how recent numbers will affect future generations. This isn’t something society has wanted to wake up to, but it is something society will need to wake up to; like a game of “ready or not, here I come!”

Landen was a 34 week preemie and is 8 years old. He began speech and occupational therapy at age 2, but due to a year of no progress in speech therapy I pulled him out, started  American Sign Language {ASL}, and began using flash cards at home.

Due to an early intervention evaluation at 26 months saying he was not Autistic I did not push for a diagnosis. At age 3 I started to see some changes in him attempting to move his mouth to produce sounds, but still non-verbal. He loved to watch ceiling fans spin, lined everything, was obsessed with Thomas the Train, would turn cars over to watch the wheels spin, had limited eye contact, would run anytime a stranger approached him, would scream, cry, and fight diaper changes, bathing, and hygiene. He could not tolerate public restaurants without hiding under tables, covered his ears, and hated any hands on play activities due to his tactile defensiveness. The more noticeable stimulatory behavior began around age 4. Later that year when he entered the school district he came into the evaluation room with 9 words, but within 5 minutes of the school psychologist meeting him she immediately said he was autistic. I grew increasingly argumentative due to his previous evaluation not knowing any better. Looking back on his initial school report it was very clear he was autistic. He received his diagnosis in April of 2009. When we finally had an explanation and I understood the seriousness of what that meant I quit working so that I could focus on how to help him.

5 years later I never imagined the progress he could make. He went from eating less than 10 foods, to developing a wide variety. He was a child that had a meltdown just walking to and from the car, store, class everyday, to now walking himself to his class on his own without supervision. He was previously non-verbal, but now giving speeches in front of the entire school and singing in choir performances. He had no friends, but now has classmates he is friends with, and a fantastic peer buddy who all appreciate his individuality. He did not begin mainstreaming until 1st grade, but by 2nd grade was full mainstream with just pull out support.

This last school year was his 1st year without an Aide at lunch and by the end of the year no longer had 1:1 support for all specials, except art. Each year it gets better and he makes more progress. He is hypotonic so it does cause some difficulty and fine motor delays. He is still not tying his shoes, swimming, or riding a bike, but I know we’ll get there. He has began to see success with opening packages and buttoning clothing. The school support he has received in the 3rd grade at his new school has been the most amazing and incredible support to his progress. He has had many amazing teachers who have helped him along the way but this year tops the cake! In can go two ways because I have also seen him in awful situations where they have pulled support too soon. You have to do it at the right time otherwise in many scenario’s it is detrimental to their progress.

Last summer he also spent his 1st summer away at summer camp with a 1:1 camp counselor and this year he’s making another trip. As of today, his biggest challenges are change in routine without prior notification, social struggles, poor sleep habits, and hypotonia related circumstances. My biggest worry currently with him is sheltering him from an unforgiving and less than humble society. He is funny, sweet, kind, intelligent, compassionate, and I love his quirky tippy toe walking and hand flapping!

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Bransen was a 36 week preemie, and is 5 year old now. I knew by 6 months old he was autistic like his older brother. He was severely impacted by sensory processing disorder to the point that he could not sleep for more than 20 minutes at a time and cried all day, even during car rides if not being held. In that year I learned how to cook, clean, and do laundry all while wearing a wrap that carried my son.

He began early intervention by 7 months old but by 18 months I could also see he was losing skills, not making eye contact, had repetitive rocking movements, OCD like feeding behaviors where he would only eat the ends of bananas or the corners of crackers, he had no pretend play well past 2 years old, was lining obsessively, not turning when his name was called, extreme interest with flipping light switches, and by 22 months he was so severely impacted that I could not take him anywhere.

He received his autism diagnosis by 22 months in August of 2010, just a year after his older brother. As soon as age 2 hit he began 9 hours of applied behavior analysis {ABA} per month and also began a 1:1 preschool for autistic children. His behavior grew increasing out of control and ABA recommended a full increase to 43 hours a month. 4 days a week I had someone in my home working with my youngest while my other son was in school. We saw so much improvement in that year that by the time age 3 hit his traits became subtle and we had a fight on our hands.

I filed against the state of California to render services, but did not win his case. The judge also stated in his final judgement that I could not file any further. As a result, and in carrying our 3rd child, we decided as soon as I delivered we would move to Nevada to start all over again. In the state of Nevada and with a 6 month lapse in service, he regressed and was found eligible. His first few weeks were really rough but he made incredible progress with his teacher his first year. He has great pretend play now, stronger social skills, very articulate, strong willed, energetic, and brilliant. He has been reading since age 4, counts past 100, knows all of his shapes and colors, can do simple addition and subtraction, and has a love for learning. He is doing well in school but has a complete dumping syndrome with he gets home. We see the absolute worst of him, and despite ABA based parent training we are still struggling to keep ahead of his behaviors. This last school year he mainstreamed full day to an inclusion preschool which has been awesome socially and academically. As long as he is constantly stimulated he tends to do better. I don’t doubt as he gets older that he’ll see success!

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Less than 2 months before we moved out of state I gave birth to my youngest son, Graysen. He was my only child of the 3 boys that was full term. We were excited and thrilled, but also concerned because of the history with our other boys.

After his birth I thought things were going well, but soon after we got home it wasn’t quite what it seemed. We began seeing periods where he would stop breathing and he wouldn’t eat. By one month old he was admitted to the hospital with failure to thrive and reasons that were unknown. I thought it would be a quick stay, but as doctors observed the apnea periods and refusal to eat, they associated it to severe gastroesophageal reflux disease {GERD} and pending emergency surgery. Thankfully, although his upper GI study showed severe, his PH Probe study, and apnea {sandifer syndrome} showed mild once he started medications. He still refused to eat so after several days an NG feeding tube was inserted and they began several medications. Even with medications and a 2 week hospital stay we saw no improvement in his feedings. We were soon discharged with apnea monitors, medication, feeding tubes, and a home health nurse to continue to monitor. He had a second hospital stay shortly after leaving the first time but went home quickly. The feeding tube was pulled out several months later with only temporary feeding improvement. His entire first year was rough! He was vomiting 20 times a day, was never a good feeder, cried all the time, and eventually dropped from the 90th percentile all the way down to the 1st percentile. He has been receiving early intervention since 2 months old due to those issues. His apnea did recover with medication and he has since had no issues.

By 9 months old he was recommended for a nissen fundoplication surgery, but we declined after a lot of research as we held on for hope. I always felt like doctors were missing something with him. I never felt like it was solely just severe GERD contributing to everything. I thought if he didn’t like breast milk or formula maybe he’d enjoy the puree’s and cereal’s, but he would never eat any of it. I don’t know how he ever made it past the first year but we did! It did turn out that by 1 year old he was diagnosed with sensory processing disorder like his brothers, and that has made his feeding extremely challenging. We also found out on his first dental visit that his undiagnosed tongue and lip tie also may have been a very big contributing factor to him never latching well. It amazes me that after so many procedures, doctors, specialists, and therapists, that no one caught it. We did have one incredible nurse who mentioned the tongue tie in the beginning, but considering it was so mild I didn’t pursue it. We have since become very close and we now consider her another mom and grandma to us. She has been such a blessing to our family!

He is 2 years old now and doing well! He no longer has failure to thrive, is off all medications, and although shows some mild Autism spectrum disorder {ASD} traits we’re just not sure where he is going just yet. Sensory processing disorder is a very big factor in his life. He is tactilly defensive, is sensitive to noises, an extremely picky eater, definitely a huge sensory seeker, and hyposensitive to a lot of things, including smell. Oh, how he loves to smell the neighbor’s trash, the park trash can’s, vacuums, and various other odd objects. However, he is beyond silly, a busy boy, and cute as can be!

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Despite all of the madness in our house on a daily basis, it has been so rewarding, and it never gets boring! It is fun and I can’t wait to share how we’re making and finding fun activities to meet their needs as they adjust to the world around them. I do hope it may be something you’ve been searching for. It can get better with the right supports in place so the important thing is to filter out all of the negativity, which will keep you from holding onto the motivation that keeps you persevering, and listen to your heart!

 

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