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.