The more they stay the same.
Chance has spent much of his first few years in and out of hospitals due to respiratory issues stemming from his chronic lung disease.
The last few years, we have avoided hospitalization and been able to manage all the issues that came up (pneumonia, colds) at home. This past weekend our luck ran out. He went to school on Friday and did well. He was a little lethargic when he came home, and then we checked his temp; 101.4. He had no appetite and when we turned on his pulse ox after he fell asleep his sp02 was 87/88. Normally it is 94-99. His breathing became more rapid and I called 911. Given his history, I was not taking any chances.
After an ambulance ride, some oxygen, and a chest x-ray came the diagnosis of pneumonia. Not unexpected, and I realized how lucky we have been these past few years, but there no reality check like watching your child being loaded onto an ambulance in respiratory distress.
Luckily we caught it early. Luckily we needed no life flight to UCDavis two hours away. Luckily we may only be here a few days as opposed to ten day- two weeks like we have in the past.
The air quality is so bad around here that even keeping him indoors most of the time still did not work for him.
I just ordered an air purifier for the house so we can eliminate some of the crap that may invade his lungs. Hopefully, the smoke will start to clear soon.
Until it does, we’ll be extra vigilant.
A few months back I posted about the kids’ cleft and craniofacial panel visit, where they had told me that it looked like Chance’s testicles had finally descended. They had me make a follow-up urology appointment just to be sure.
When the urologist examined him, she couldn’t feel the testicles ☹ I’m surprised she could feel anything because he was writhing and screaming the whole time. At one point he stopped, looked straight at me and said, “I DON’T LIKE THIS APPOINTMENT!”
So the urologist put in an order for an ultrasound of his scrotum and his kidneys because there was an ultrasound done many moons ago(like when he was in the NICU seven years ago) that detected a touch of hydronephrosis. A second ultrasound didn’t show anything, but now they want another one “just to be sure.” Ok.
I explained to the urologist that any ultrasound would go much the same way as the exam; with lots of yelling, crying, and thrashing. Chance has medical PTSD. He has been through so much; in and out of hospitals, invasive procedures and endless poking and prodding that he freaks out whenever anyone tries to examine him. The anxiety starts the minute we set foot in an examination room.
I was told to request Child Life to help out with distraction, etc. As much as I love the Child Life staff and volunteers, I really don’t think toys are going to distract him while he is getting his nether regions scanned. If it is anything like the ultrasounds I’ve had done, they press down HARD. It’s uncomfortable, to say the least.
I made the ultrasound appointment today and explained my concerns to the tech. She completely agreed that Child Life probably wouldn’t work, and if we didn’t get a decent scan, it would be a total waste of a 5 hour round trip, and more trauma for Chance. She suggested I ask the Dr. to prescribe him a one time dose of something to calm him down right before, so I put in a request today and am waiting to hear back. If she doesn’t do it, I’ll ask his pediatrician. If THAT doesn’t work, I am going to wait and have him scanned next time he has a procedure under general anesthesia because at least that guarantees an accurate scan.
To be continued…..
For many parents, receiving a diagnosis for their baby not only brings emotional stress but financial turmoil as well. Hospital bills, multiple doctor visits, therapies, and nursing care can have a huge impact on a family’s finances. Even with insurance, there can be hefty deductibles to meet and battles to get authorization for necessary services.
Often, in a family where both parents are working, it may become necessary for one parent to quit their job in order to stay home with their child. Many times there are no available child care services for medically needy children available, the family does not qualify for in-home nursing care, or the nursing agencies are short staffed, and no nurses may be available to them. With the loss of income, it can have a devastating effect on the family’s finances.
There are many programs that are designed to support families with financial difficulty or offer free support to help navigate the complex world of parenting a special needs child. These programs have certain criteria that need to be met before a child or family can qualify, and there is no guarantee of acceptance, but they are worth investigating for assistance if needed. Some of these programs pertain only to California
Medi-Cal and Medi-Cal Waivers: Medi-Cal is California’s Medicaid program. Medi-Cal waivers are programs under Medi-Cal that provide additional services to specific groups of individuals, limit services to specific geographic areas of the state, and provide medical coverage to individuals who may not otherwise be eligible under Medicaid rules.
For more information on available Medi-Cal waivers please visit: http://www.dhcs.ca.gov/services/medi-cal/Pages/Medi-CalWaiversList.aspx
In-Home Support Services: Other states have similar programs, but California is the only state so far that will pay parents of minor children as providers. To qualify, a child must have an undeniable level of need and the organization requires documentation from a physician and/ or regional center. In a two-parent household, one parent must be working full time or be enrolled full time in an educational program for the other parent to be paid as a provider. The provider parent must be able to justify that he or she cannot maintain employment due to the needs of the child.
For more information visit: http://www.cdss.ca.gov/In-Home-Supportive-Services
Supplemental Security Income: Disabled children with qualifying conditions may be eligible for SSI payments. SSI is income based, and the child’s parents can not have assets worth over $3000 for a married couple or $2000 for a single parent. There are certain excludable assets (which are prone to change) such as a home which is the family’s primary residence, one car per household, and more which are listed on the SSA website.
For more information on the SSI program and qualifying criteria please visit: https://www.ssa.gov/benefits/disability/
California Children’s Services: California Children’s Services (CCS) is a state program for children with certain diseases or health problems. Through this program, children up to 21 years old can get the health care and services they need. CCS will connect you with doctors and trained health care people who know how to care for your child with special health care needs.
For more information about CCS please visit: http://www.dhcs.ca.gov/services/ccs/Pages/default.aspx
ABLE accounts: Normally, SSI recipients are only allowed to have a certain amount of resources before their benefits are affected. Currently, it is $3000 for a married couple and $2000 for a single person. Setting up and ABLE account allows disabled individuals to save money without losing their benefits such as SNAP, SSI, or MediCal. The ABLE Act limits eligibility to individuals with significant disabilities with an age of onset of disability before turning 26 years of age. At this time, California does not have an ABLE account program, but accounts can be opened online in other states. Only one account per person may be opened at one time; an individual cannot open an account in multiple states.
For more information please visit: https://money.usnews.com/money/personal-finance/articles/2017-01-11/what-to-know-before-opening-an-able-account
It’s been a whirlwind of a day. Up and on the road before dawn, and a four-hour long appointment with the Cleft and Craniofacial Panel at UC Davis for Chance and Lilly. It’s a lot of sitting in a tiny room while a revolving door of clinicians come through and do exams, take histories and do a lot of poking and prodding.
We do one of these every 1-2 years and today was one of the better ones, despite Chance asking “are we done yet?” every five seconds until I caved and let him watch Nick Jr. on my phone. Lilly was a rock star the whole time, a huge difference from a few years ago when, as one of the paediatricians remembered, “she hid under everything she could hide under to avoid me!”
Chance got a larger size trach, in the hopes that it will help with his sleep apnea by opening his airway a bit. He is now asleep in my bed, hooked up to his pulse ox machine so I can keep a good eye on him tonight to see how the new trach does.
His testicles have also descended, which is really good news. There was a prospect of surgery, but now it looks like it won’t be necessary. Now we can go full steam ahead with potty training this summer. I had been putting it off, thinking that if he needed surgery, he would just have a setback anyway.
Both kids have multiple orthodontia and dental issues. Lilly has teeth growing where there shouldn’t be teeth growing, and Chance has a molar coming in sideways and extremely crowded teeth. Both will need surgical intervention and braces somewhere down the line.
Both also had hearing tests and Lilly is going to attempt to wear her bone conduction hearing aids again. Chance was uncooperative for most of the test. He freaked out when they tried to put headphones on him, and it went downhill from there. Results for him were inconclusive, but he hears well enough to function at home and at school so they weren’t overly concerned about it. They are hoping in a year or two he will have matured enough to let them do all the testing.
And after all that, Chance lost his second bottom tooth sometime tonight, and we have no clue where it is.
Now I need a couple of days to recoup from the craziness!
April has long been known as Autism Awareness Month and April 2nd as World Autism Awareness Day. Since my daughter’s diagnosis years ago, I have been involved in many online support groups, read many blogs, and participated in a number of discussions about what exactly this month should be about, or if it should even be a thing at all.
Some say that we should promote autism awareness all year, not just one month a year. Some interpret this month to be “celebrating” autism, and there are debates over this as well. Should autism be celebrated, given what families actually have to go through on a daily basis? Should autism be seen as a gift or a blessing; a part of what makes a person unique?
I have a problem with the concept of “celebrating” autism itself. I will celebrate my daughter every day, just as I will my other three kids, but not just merely for the fact that she has autism. Because even though Autism is a part of her, it’s not who she is. It doesn’t define her. What I will celebrate is what living with Autism has taught us: perspective, patience, tolerance, how to think outside the box, and the power of love.
The other issue I have with the notion of celebrating is that for a large number of families, there is little to celebrate. Should I celebrate the fact that I have to change my eleven-year old’s diapers? Should I celebrate the fact that we have to watch her like a hawk whenever we leave the house because if she gets separated from us, she can’t communicate effectively with anyone to help her? She couldn’t even answer us if we called out to her. Or should I celebrate the fact that as far away as it may seem, her future is uncertain; will she ever be able to live independently? It’s doubtful. She will always need some type of support.
As far as we have come in awareness, we still have a long way to go. Many people still associate Autism with what they see on television: Parenthood, The Good Doctor, and Atypical. All high functioning for the most part, and not an accurate representation of what most families who have a loved one with autism experience. So, when I throw on a blue awareness shirt or put blue streaks in my hair, or post about our life experiences, I’m not celebrating the fact that my kid has autism. I am trying to start a conversation about what autism means to us. And what it means to us is totally different than what it means to someone else: every situation is unique. By participating in Autism Awareness Month, I’m trying to educate as many people as I can about the truths of autism in the small window I have before May is upon us and another awareness month comes along.
Lilly was always a complicated child. Born with multiple medical issues, she didn’t meet most of her milestones in her first year. She didn’t speak because of scarring on her vocal chords, and she didn’t eat; she was primarily tube fed for the first 7-8 years of her life. Even now she can only tolerate liquid in a sippy cup; she is unable to chew solid food well enough to break it down to swallow.
We thought nothing of her delays; they were expected, given all her medical issues. We weren’t one of those families with isolated autism, where the child is healthy by all accounts and then one day they’re not. Unhealthy was our norm.
When she was around two years old, I mentioned to her early intervention specialists that she had been licking pieces of a wooden puzzle that she loved to play with. Since she was usually averse to putting anything near her mouth, I thought it was odd, but Autism never crossed my mind. It also didn’t cross my mind when I would see her rocking in place. She would rock slightly back and forth when she was sitting and standing. She also bounced- a lot. We had a baby seat that Lilly would sit in whenever she got the chance and just bounce gently for hours, despite the fact that she had long outgrown it.
It wasn’t until the specialists started pointing out her lack of eye contact and tendency to isolate that I began to see it. She had always preferred to be alone. She wasn’t grouchy or irritable; she just fancied the solitude of her room, playing with her toys.
I also began to notice the lining up, the hoarding, and the other OCD behaviors that I had apparently been blind to before. Piles of stuff began to grow in her room, arranged so carefully that she became unglued if anyone touched them or accidentally moved anything. She always needed to have a pile of books near her. She wouldn’t even read them most of the time- she just wanted them nearby, like a security blanket.
It was around this time that it was recommended that she be evaluated for autism. After a round of evaluations, examinations, and observations, she was diagnosed with autism spectrum disorder. She was also diagnosed with an intellectual disability- a double whammy.
I remember thinking back then (naively) that it was just one more diagnosis to tack on the ones she already had. She was still little and her meltdowns were easily disguised as normal toddler tantrums. It didn’t seem like such a huge deal. I didn’t know that much about autism, aside from seeing “Rain Man” multiple times. We didn’t know anyone that had this diagnosis. Back then, it was peripheral to us.
Over the next few years, we would be dealt a very big slap of reality as she grew older, bigger, and stronger. The meltdowns became more intense, the OCD behaviors intensified, and the things that didn’t seem like a huge deal when she was nearly three were now a very big issue.
She reminded me of that nursery rhyme “There Was A Little Girl” by Henry Wadsworth Longfellow. “When she was good, she was very, very good, and when she was bad she was horrid.” Only it wasn’t she that was bad, it was the autism.
There seemed to be no middle ground. She would either be calm, mild, and playing happily in her own world, or she would be in a rage; there was no in-between.
After the official diagnosis, the more intense services began. More speech therapy, more occupational therapy, and behavior therapy as well. We wouldn’t receive ABA for several years, but we had a behavior therapist come and work with us and teach us techniques to use with her.
We also changed her diet, which was relatively easy since she was 100% tube fed at the time. I had heard from many people and read countless articles about how eliminating wheat and casein from the diets of children with autism had had positive effects. We found a formula that fit these parameters and within six months there was a marked difference. A fog seemed to lift; she was more aware, made better eye contact, and interacted with her surroundings more. It wasn’t a cure, but it helped a great deal.
That was the beginning of our journey into the world of autism. It’s been almost eight years, and it has been a roller coaster of epic proportions, but I would not change it- not one bit.
Tonight, two days shy of my forty-sixth birthday, I participated in my first ever lockdown drill.
Instructors at my school recently participated in ALICE (Alert, Lockdown, Inform, Counter, Evacuate) training, which is described on the website as a more proactive method of dealing with a violent intruder.
Proactive, as in doing more than sitting quietly and hoping you don’t get shot.
We were warned about the drill and told what to do: shut the lights off, lock the door, and stay out of sight. Not under the desks, which are in plain view of the untinted window. Two people on either side of the door grabbed heavy objects to ambush the would-be intruder should they be able to break the lock and get in. The rest of us lined up against the wall next to the door, where we couldn’t be seen. The whole thing took about five minutes.
Since Sandy Hook in 2012, school shootings have always been one of my biggest fears regarding my kids. The schools have many lockdown drills during the year, and some hardcore security fencing has been put up in many of the elementary and middle schools in the area. Measures are being taken to protect our kids; it’s not that which worries me. What petrifies me is the fact that I have two kids with unpredictable behaviors and I have no clue how they would react to an active shooter situation. The drills they have at the schools are controlled; there is no loud gunfire and people screaming. Everyone is (semi) relaxed; tonight people were laughing and joking around. You can do lockdown drills all you want, but we all know that if someone walks into a school firing a gun, the atmosphere wouldn’t remain calm for long. Especially not with kids like mine
I’m talking about kids who need sound reducing headsets to get through an assembly at school because they can’t stand the loud clapping and noise of a crowd. Kids with sensory issues. Kids who freak out if they are overstimulated. Kids who might do a limp noodle and refuse to move because they are just flat out too scared. Kids who won’t remember to, or simply cannot remain quiet for however long it takes to hide from a violent intruder. Some don’t have that ability. Some are non-verbal and will scream and cry if they are scared-just the opposite of what they are needed to do.
What about evacuating? If there was a need to run out, what about the kids that can’t run? Or walk? Or need someone to guide them through the chaos and keep them calm?
What would happen to these kids, to my kids, if God forbid a violent intruder ever did break through the metal barriers and attacked? These are the things that keep me up at night, and there is no answer for it. All we can do is keep drilling them, and pray that an active shooter situation doesn’t happen.
So Lilly is in 5th grade this year, and around here, a major rite of passage occurs in 5th grade- WES Camp. Environmental sleep away camp for a week with your school. I think it’s a rite of passage everywhere around this age: I remember going in sixth grade, which back then was the last grade before graduating on to Jr. High. Now it’s 5th grade, moving on to “Middle School.”
I saw the info in her school folder awhile ago, put it aside, and promptly forgot about it until a reminder call today letting us know we had to tell the school if she was going to go or not, as the deadline for registration is fast approaching. She is in an SDC (special day class) which is a classroom of combined grades for kids with special needs. Apparently, since she is in 5th grade, she is eligible to go.
I remembered how much fun her older brother had when he attended the camp two years ago and wished that she could have the same experience. But she can’t. There’s too many “what ifs” and too many risks. She wouldn’t be able to stay overnight without a 1:1 aide and the budget doesn’t allow for it. Even if it did, there would a new schedule, new people, new triggers. We wouldn’t be able to be there in ten minutes if her behaviors escalated like we would be if we got a call from her school. It takes at least 45 minutes to get to WES Camp. There is the potential for her to wander off by herself, in the woods, or near the water. She has had loads of swimming lessons, but I have no idea what she would do if she was panicked and alone.
This is life with autism. Saying “No” to ordinary, everyday things because you know your child’s limits, even though you feel like you are somehow depriving them. Yet keeping her safe and secure is our number one priority, and I will never feel guilty about that.