Fear of the Needle

The past week has been stressful, scary, and traumatic.

It started last Sunday when Hudson exhibited strange symptoms we’d never seen before. Like most anyone else, I grabbed my phone and asked Dr. Google for advice.

Asking Dr. Google for advice is equally as good as it is bad. She‘s always on the clock but you can’t always take what she says as gospel. Her advice is often filled with extreme cases and verbose medical studies that sometimes go WAAAAAY over my head.

Based on the symptoms exhibited and the web diagnosis from Dr. Google, I jumped to grab an appointment with his pediatrician‘s office. We have the benefit of going to a large practice where our kids can be seen by a number of doctors, NPs, and RNs. This is often helpful because his pediatrician is in high demand and rarely has openings on short notice.

This particular condition has a range of tests needed before a formal diagnosis and treatment can be given:

- Physical exam

- X-ray

- Series of blood tests

- MRI/Endocrinologist referral

Treatment for the condition depends on its severity. It can be as simple as monthly medication through an IV, or it can be extremely serious and require invasive surgery.

We were hopeful that the physical exam and x-rays would be “negative“, ending the chances of Hudson having this condition. Unfortunately, that didn’t happen; we were asked to come back two days later for the blood tests to be run.

Blood tests mean needles. Like most kids, Hudson has a tremendous fear of needles.

Kayla and I try to prepare Hudson for whatever changes in routine he’s going to face in a given day. If we don’t do that, he’s more likely to spiral into meltdowns. We told him that morning about his appointment and that it would likely require his blood to be drawn.

That day at school was a rough one for Hudson. He’d never tell you if you asked him a million times, but we knew he was anxious about the appointment.

His doctor checked him over thoroughly before ordering the blood draw. She did her best to reassure me that their phlebotomist was “phenomenal“ and “great with children that have sensory issues.” When she came in to prep Hudson, she saw he was getting antsy and asked me if I needed any help. I immediately said “yes” and a nurse was called in. I knew the struggle that was to come would require all the help we could get.

Hudson was sitting on my lap, watching a Jurassic Park video on my phone. The phlebotomist tied off each arm to find the best vein, which triggered Hudson into meltdown mode. I struggled to calm him and hold him down, and the nurse struggled to keep his draw arm in place. I swear Hudson jumped to the ceiling when the needle was unsheathed.

The nurse and I did our best to wrangle him back into place, but we were no match for his adrenaline-fueled fears. Another nurse was called into the tiny exam room and we strategized the best approach to getting his blood drawn in one attempt.

Hudson climbed back into my lap, anxiously watching the phone in my hand. I wrapped my legs tightly around his, and my arms were wrapped around his chest as tightly as I could. One nurse held his draw arm in place while the other leaned over me to help hold his shoulders down while the phlebotomist got ready.

This restraint resulted in the loudest blood-curdling screams the office likely had ever heard. With each lurch and scream I held him tighter and tighter. I held my breath as the needle was finally close enough to attempt a stick. A miss would mean a quick regrouping before we tried again. I’ve had blood drawn enough times to know it’s not easy to do it in one attempt when completely still (which Hudson was not). Luckily, the first attempt was a success.

I tried to catch my breath for a split second before Hudson saw the blood trickle through the line into the vials. He immediately screamed again, begging me to “make it stop” and to take the needle out. “Daddy, please!!! Please!!!!” he wailed. I could feel a lump in my throat and tears welling in my eyes.

The next 30 seconds took forever. With three vials filled, the needle was withdrawn and Hudson was bandaged up. He was soaked in sweat and his skin was bright red. When I released my grip on his arms and legs, I erupted into tears. This was a mistake, but I couldn’t help it. Hudson looked back at my sobbing and asked why I was crying. I couldn’t speak; my heart was too broken for what I had just subjected him to.

Lab results trickled in over the next few days. All but one came back abnormal, indicating that he likely has some form of this condition, and requiring us to schedule the next series of tests. His pediatrician suggested that we put him under for his MRI given his sensory issues and the challenges with sitting still for long periods of time.

Going under means more needles. More restraints. More torture… and more tears.

I’m now just as scared of needles as Hudson is.

Being Supportive When Things Aren't "Ok"

Like many other parents, our journey with Hudson's diagnosis has been full of ups and downs. The harder days often outnumber the easier days. We celebrate each success that Hudson has... and we languish over each setback.

The past two days have been particularly hard for us. And I can honestly say... we are not "OK."

We had Hudson's annual CSE review meeting yesterday. If you've never participated in a CPSE or CSE meeting, it's basically a gathering of a student's teachers, therapists, and parents to review the progress made in the current year and to establish needs for the upcoming school year. Progress is celebrated and positive things are said. But the band-aids also get ripped off and the cards are all laid out on the table. We heard Hudson's struggles summarized prior to suggestions being offered for what might help him in the coming year. In an attempt to dull the pain of these meetings we have successfully pushed for frequent communication and group meetings with his team. Kayla and I are truly grateful for the team that Hudson has, and for their willingness to help us as much as possible.

These meetings are always difficult for us as parents. As an educator, the difficulty for Kayla is even worse; she works in the same schools as his team and has developed personal relationships with many of Hudson's support team members. She often has to second guess which hat she is wearing when she participates in meetings like this.

Kayla and I were particularly caught off guard when we heard that his agressive behavior in class this year had gotten worse. Concerns had been shared with us throughout the year about his outbursts when transitioning between activities or tasks. There have also been numerous instances reported of his having had confrontations with his peers; both verbally and physically. As a parent, we cringe in pain and sadness each time we hear that Hudson has verbally or physically attacked another student. We naively had hoped that these instances were occuring less often than they were and that he was learning how to regulate himself in situations that triggered him.

We want to preface this next section by saying that Hudson truly has a tremendous support staff of teachers and therapists in place. They truly love and care for him, and we wholeheartedly agree that they are doing the best that they can for him and have his best interests in mind. He would not have made the positive growth that he has made without them. But we are also in a very small community where autism and behavorial therapy resources are very limited, both for him and for us.

I received a phone call earlier this morning from the school. My heart drops everytime I see the school district name on my caller ID, as I know that it is never a good thing when this happens. I was informed that Hudson had a rough morning where he struggled through a PE class. He started bashing his head against the wall while yelling at his PE Teacher and spitting at his peers. This school year has been the most difficult for him by far, with yelling at his peers being an unfortunate and consistent behavior. The spitting and head bashing is behavior that we have never seen from him before, though, and it paralyzed me to hear those words said. I barely had a minute to process everything before starting a work meeting. I dreaded telling Kayla about the call, but knew that it was my responsibility to tell her before she picked him up from his classroom at the end of the day.

I cannot begin to count the number of conversations that we have shared regarding what Hudson needs, or the number of tears that we have shed in realizing that we are often lost in this process. We don't know what is triggering him during school any more than we know how to help him understand and process these feelings in a non-destructive manner. He never wants to talk about these situations after they've occurred. He shuts down when we ask him and often escapes under a blanket on the couch or in his room. We'd love nothing more than for him to open up to us about why he felt the need to attack another student in a given day, but those conversations never happen the way that we need them to. And simply put, we often don't know how to give Hudson what he needs. This makes us feel like we have failed him as parents.

This blog was created as safe place for us to share our experiences. Many of our close friends, family members, and coworkers read the stories that we share here. Most support us as best as they know how to. Some even share what we post with others, and we are grateful for each and every one of you. But sometimes, we need more than than a like or a share; we need more than an "I'm sorry" text when we feel the need to vent about something. Autism is something that takes thought and research to begin to understand, and that's just scratching at the surface.

For many who only see Hudson in glimpses a few times a year, we can understand how easy it can be to think that we are being overdramatic about his autism. There are so many moments where he truly shines. He has a bubbly personality when he wants to and can charm anyone. But the reality is that, when times get tough, we often feel lost and alone in this journey. We don't pick up the phone to call when days like the past two occur because we don't know who is ready and willing to listen. Half the time we aren't sure that we can say what we need to say without completely breaking down ourselves.

It's a lot to ask of someone to know how best to support people struggling with life on the spectrum. It's a lot for us to even post this. We don't do this to seek attention; we do it to seek awareness, acceptance, and understanding of what autism is for us. Everyone has their own challenges in daily life that don't require blogs or social media to help them cope. As Kayla and I learn more about autism, we see that we have it lucky compared to many others out there. And for that, we feel tremendous guilt. We have an entire post dedicated to the guilt that we feel, but it's too painful to post.

This blog is our vessel, and we are barely staying afloat most days. We are adrift on the spectrum and don't know which way to steer. We don't know how to help Hudson or how to give him what he needs to get through the challenges he has faced this year. There are times where we need a sympathetic ear, a hug, or anything else that you have to offer beyond the click of a button on a post. If you feel so moved to offer support to us - or someone dealing with life on the spectrum - know that it is likely well-received and greatly in need.

If you don't understand or don't know what to say, start with asking questions. Listen to what they have to say, and check in whenever you have a free moment to do so. Research what you can and know that you aren't expected to have the answers. But please know how much you are needed, and how much your reaching out would mean to people like us.

Being an Autism Parent at a Faculty Meeting

Every first Monday of the month we have our school faculty meeting.

I go and I listen as a staff member, but always find myself really following along as a parent. Today we talked about the school year coming to a close.

I couldn’t help but think about Hudson as each topic was brought up.

Summer school. I’m not thrilled about the idea of sending him, but I know he needs the consistency. He’ll probably resent me the entire summer for it.

Track and field day. I should’ve felt joy when this was mentioned; we haven’t had it in two years due to Covid. It’s a fun day for all and the parents love coming to watch their children compete. All I could think about was how hard it’ll be for Hudson. Competition is a massive trigger for him. He collapses on the ground every time he doesn’t score a goal or isn’t the fastest or best athlete at soccer practice. Track and field day is going to be full of triggers for him.

Fire drills. We haven’t had these in our district since the pandemic. Talks of fire are also triggers for Hudson. Even the mention of the word sends him spiraling. I immediately asked our principal if the teachers could be forewarned before the drill; surely Hudson’s teacher would need time to prepare him beforehand.

I came home from my meeting feeling exhausted after a long day. My husband warned me that Hudson was “in a mood” and triggered by every little thing around him. And boy was he.

After dinner, Hudson fought me on his homework before spending the next 45 minutes crying because we lost a very small toy that was part of a collection. We turned the house upside looking for it hoping it would help ease his anxiety and sadness, but we struck out.

As he eventually calmed and played monster trucks in his room before bed, I sat in his room and cried. The heaviness of the day… of autism… had worn me down.

As I sat and cried I thought of a coworker’s words. After the meeting today, she approached me about the fire safety issues with Hudson and how a local volunteer firefighter had mentioned how happy it made her heart to help him through his fears. There was a “Learn Not to Burn” event at the school last week that Hudson’s class had participated in (it’s a story for another post). My coworker reminded me that although things are hard, he has made me a strong person and a great advocate.

There are many days where I honestly do not like autism. Today was one of them. But there is no doubt that - through all the hard stuff - it is teaching me to be so much more for my son and to fight for his needs.

Also please don’t ever doubt the power of positive words. Today was a hard day but hearing those kind words from my coworker made a huge difference.