Commencement

When I started this blog almost three years ago, I had this vision of the post I would write when Nigel graduated from high school. Obviously, I would write about how incredibly proud I was of him, how much he had taught me through the years, how consuming my love was for him, and how hopeful I was for his future. And I would post a short video of him receiving his diploma. I imagined that one of my relatives would be filming so that I could watch my son, who had always tried so hard, harder than anyone I know, and struggled so fiercely. I envisioned that the person filming would film me for a few seconds standing there, crying as I watched him, and when I noticed that they were filming me I would hide my face and wave them away, saying, “Film him, not me!” And the person would zoom in and film Nigel, focusing on his beautiful, serious face, self-aware of his accomplishments and determined about his future.

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All his life Nigel has told me, whether through behavior or words and often both, what he needed. And I have learned to listen (and be attentive). He would tell me, by screaming and bolting, that a sound or an environment was too loud, too overwhelming, and he had to get out of there. He would tell me by rubbing his lips until all the skin around his mouth was red and cracked that his anxiety level was too high. And later, when he had the words to do so, he would beg me to homeschool him because mainstreaming was too torturous with the bullying he endured. After a year and a half of homeschooling, he would tell me that he wanted to try some medication that would help him to regulate his behavior so that he could go back to regular school, because he never stopped trying. A year later, he would tell me that he felt he had learned to regulate his behavior himself and that he no longer needed the medication. And he was right.

Two weeks ago, after a discussion about the dismal state of his grades and the fact that he is not aware of any executive function skills class that he is supposed to be in, he told me that he thinks he needs to get a modified diploma. His anxiety level has been so high that he has been pulling out his hair incessantly for weeks. He feels completely overwhelmed. And he is becoming aware of his emotional delay. Just a few weeks ago, at the grocery store, out of the blue he said, “I think the reason that I still like stuffed animals and Lego is because in my heart I’m like someone younger than myself.” I tried not to cry at his brave, self-aware statement and told him that I think he’s right, that his teachers and therapists have documented it over the years. I gently explained to him that at first they assessed him to have a six-year emotional delay, but somewhere along the way he gained a year, and so at age sixteen, he is like an eleven-year-old. “Yeah,” he said. I could see the wheels turning as he processed this.

Here’s Nigel at age eleven. How could I possibly expect this little boy to function as a high school sophomore? How could I think that the workload wouldn’t overwhelm him? That even though he was intelligent enough to understand it, he couldn’t handle the amount of it? Along with all of the social challenges and sensory issues he still battles on a constant basis? How could I think that the extensive support and assistance he receives both in and out of school would be enough? It’s not just about his lack of executive functioning. It’s about emotional maturity. How could I expect him to receive a regular diploma? That he would somehow figure it all out and navigate everything when he’s emotionally an eleven-year-old? How?

I’ll tell you how: Dreams. My son taught himself to read at age 3 ½, before he could even talk, and so I dared to dream. But don’t worry – I’m not throwing my dreams out the proverbial window just because he’ll be getting a modified diploma, because I now accept that that’s what he needs. I’ll still have dreams for my son, but those dreams are now realistically calibrated. What’s the problem with getting a modified diploma? It limits post-secondary educational opportunities, but with time and support perhaps in a few years we will be looking up online college degrees. And while I know that extended high school is a possibility for some students in similar situations, it’s not a good option for Nigel. He’s comfortable at his high school, but he doesn’t want to be there any longer than necessary. He knows that option won’t work for him, and I agree.

No sooner had I indicated my support for his need to get on the modified diploma plan than he stopped pulling out his hair. I told him that it wouldn’t go into effect until everything had been written into his IEP at the upcoming meeting, and he understood. His relief, and his appreciation, was palpable. I had given him the autonomy to make a decision about his life and the respect and esteem that goes along with doing so. He knows himself. He knows what he needs. He always has.

*

For every bit of Nigel’s progress over the years, I am truly grateful, and I am so proud of my son. But in all honesty it was painful for me to write this post. To know that after everything we’ve been through and all he’s accomplished, this is the best we can do. Mostly, it was painful for me to let go of a dream. Oh, I can say that I’ve “calibrated” my dream, but in reality, I had to let it go. And that’s okay. Because I’ve learned that my dreams for him are not necessarily his dreams for himself. And the fact is, when I look ahead to his graduation two and a half years from now, the particulars of his diploma will be different, but nothing else will. Someone will still be videoing it, I’ll still be crying, and I’ll still feel all the things that I would have felt had he received a regular diploma. I’m certain of that. And I’m certain that Nigel’s beautiful, serious face will still reflect the awareness of his accomplishments, and his determination for the future.

28 thoughts on “Commencement

  1. Johanna

    This was a really, really touching post to read. You are such a good and brave mother and Nigel seems to know himself really well. You know what, that is an achievement in itself. Not even NTteenagers always have that ability. Many congratulations to Nigel and you for the achievement!

    It is hard for me too seeing that the abilities my son has don’t equal necessarily academic or even official recognition. My hope is that Nigel and my son too find their nieche. If the education system in the US is anything like in the UK, they now demand that everybody needs to be well rounded and THEN good at something. Unfortunately that shoe doesn’t fit in many autistic people’s foot. They can be brilliant in many ways, but seldom averagely good at everything.

    My son has never been assessed on how much his emotional maturity is behind, but behind it is. I have started to train myself to think that he might have to stay longer with us just to get around this point and we need to find flexible ways of studying, so his maturity fits somehow the level he is studying at. Our first little step has been delaying the transfer to middle school by a year.

  2. Christine

    This gave me a lot to think about, thanks. Nigel has an amazing mother to figure this all out. I am sorry, I know letting go of a dream can hurt.

    Long before diagnosis and doctors I would re-age Dylan, sure he has been alive 5 years but he is really only a 3 year old I would tell myself. Doctors have never done this, it is always me and my husband laying in bed at night, talking about where he is. School is a disaster right now. He is beyond stressed, I am sick with worry about what is not getting done…..but of course didn’t we just decided over Christmas he was an 11 year old (Nigel and Dylan must have something in common, maybe it’s Lego’s). Wow we have a lot to think about. Next year grades start counting towards graduation…he has failed more classes than he has passed and the work will get harder. I wish the decisions we make were easier. By the way I have never heard of a modified diploma.

  3. Jan

    Tanya:

    This hits so close to home! I love having you two steps ahead of us, paving the way.

    Even though my daughter’s issues don’t involve autism, her anxiety and emotional delay still greatly affect her school life. I’d put her at about two years behind emotionally. But as we look at the various options for her move to high school next year, the questions are the same: how does her reality fit against the dreams I’m unwilling to give up? What’s the balance between pushing her too much, and supporting her too much? How do we find that fine, tightrope-thin line to walk?

    So, thanks for your bravery, and your self-reflection, and your honesty. In case you ever wonder whether this blog makes a difference, whether breaking out of your “shy” shell and sharing your family life with the world has any impact, it does. Definitely.
    And hugs to you and your beautiful boy.

  4. Carrie

    Similar to what you just commented on my post, this is both heartening and heartbreaking. It’s never just one or the other with these kids, is it?

  5. rhemashope

    beautiful, beautiful post.

    i love the way you love him, know him, understand what he needs and do your darndest to give it to him. i’ve said it many times, and i have to say again, nigel always inspires me and gives me hope. he is amazing.

  6. Karen

    I feel your pain. We had an ARD meeting a few months ago where we came up with the same determination. I was o.k. while I was in the meeting, but so many words bothered me afterwards. “performing under grade level”. It just killed me. Because, I know he is bright. I know he is capable -just excruciatingly slow processing and definitely emotionally immature. It was too painful to write about so I let it go. I think now, I will go back and write about it.

    Thank you for sharing!

  7. Pie Maker

    I can see your strength reflected in Nigel. This resonates deeply. While we are not at this decision I’ve made a few along this path that have this same feel to them. For example, deciding that a self contained class was the right choice for Piper. I guess I’m just saying I understand. Hugs to you.

  8. Lex Savko

    I knew this was coming, but it still made my eyes well up to read it, both because of what I understand it represents for you and Nigel, but also because you write with such grace and poignant clarity. But you are right to recognize that as much as this is about letting go of your dreams, this is primarily about Nigel: his dreams, his strength, his time to mature and go about the process of discovery. I love you both and look forward to seeing a wonderful future for both of you!

  9. Kim

    Oh Tanya, this make me choke up and really pulled on my heart. And not because I am sad for you, but because of the fierce love you have for your boy and for him to self advocate as he has! So wonderful. That his relief was palpable, oh my! I can imagine you just as you described on graduation.

  10. Tanya Savko Post author

    Thank you, everyone, for your beautiful, supportive comments. I appreciate you beyond words.

    Christine – It’s possible that your area/school district has a different terminology than modified diploma, but usually districts have a special education-oriented plan for students who are unable to do the regular workload to earn a regular diploma. My understanding is that in most cases students who earn a modified diploma are eligible to attend classes at a community college, but not a four-year university.

  11. Karen

    They can always do the university once they complete community college. With the rate of maturity, they will probably need that extra time to be university ready if that’s what they choose to do.

  12. Tanya Savko Post author

    Karen – That’s true. I’m mostly concerned about the requirements of the film school that Nigel wants to attend. Most of them require a regular high school diploma. We’ll have to look into it further.

  13. Elise

    Try putting him back on a little medication if you already haven’t. I just went through medication changes for both of the boys and I can’t tell you how it has made a world of difference, including the hair pulling issues that collegeman has.

    Interestingly collegeman also has been talking recently about how he is much more immature than his peers. He sees it and he understands it. When you understand your issues that is the most important step to fixing what you know you have to work on.

    Also the executive functioning is an on going issue for both boys. Sometimes things are just what they are and it will always be a challenge for them. But we can’t let it interfere with who they want to really be and what they want to do with their lives.

    I don’t know if they have anything akin to vocational training in your school district, but they have a joint program here that allows the student to get a modified academic diploma while they study a myriad of hands on skills: computer tech, culinary, hair and makeup, health related services, etc. A friend of HSb is in the culinary program is is exceptionally happy. Half at day at core highschool subjects and half a day at culinary school. Maybe something like that for Nigel.

    BTW Nigel will get to graduation and beyond. He has a mom who cares that is so obvious.

  14. Tera

    I’m crying right now, and it’s not even graduation time yet. Thank you for this post. For allowing me to feel the pain of losing MY dreams. It is an ache, one that never quite goes away…but then comes Nigel…a 16 year old at an 11 year old maturity…similare to my own son in many ways…and he makes the decision for himself something we wouldn’t even expect out of someone 25. He knows how to lessen the burden, he knows how to achieve this, and he feels *safe* asking and offering solutions. Wow, Tanya, WOW!

    What a great mom and a great kid and a great idea in achieving success. I’m so proud of you, and so sorry for your dreams. I know you will modify and be fine, but I am sincerely sorry for losing what you had dreamed. I am glad you realize the important parts of that dream are still alive. I’m right there with you, my friend.

  15. Shelby

    I can the love you have for your son in your writing! He is very lucky to have a wonderful mother like you. My son is currently 10 yrs old and I am experiencing some of the same emotions you are. My son is still young but I keep thinking about his future. He has been begging me to homeschool him too. He has a hard time expressing his feelings so it is hard for me to tell why he wants to be homeschooled. It is a decision we are still thinking about. Thank you for this! It is hard at times for me to think about what could be and weigh that against what will be for my Matthew!

  16. Boy Wonder's Mom

    May I be the aware, giving and selfless mother you are in years to come.

    It’s always hard to do what’s right for them that continues to fall outside of the norm.

    I try to keep in mind that Boy Wonder is entitled to his own hopes and dreams and that even if he was “typical” his wants, needs and desires could be radically different from my own.

    Love you, my friend

    xoxoxoox

  17. Michelle O'Neil

    I love so much about this post. I LOVE the honesty of the first paragraph. I love how much respect you have for Nigel, to know what is right for himself. I love the fluidity with which you parent. No rigidity. I see you and Nigel both, as ever expanding, ever growing, ever trusting in the goodness which awaits you.

  18. goodfountain

    I will miss hearing about Nigel regularly. I consider him an inspiring young man, and you a role model mom. Truly, Tanya, I want to be as connected to my kids as you are to yours.

    Many hugs and blessings to you, Aidan and Nigel.

  19. Carla Crissey

    I have stumbled across your blog and glad to have found this post…thank you! In tears as I write…I’ve been schooling our autistic kids for 4 years now and am at a difficult crossroad…your post here has helped me to label and put into words what I’m feeling now and has given me permission not only to grieve for a dream that I had, but also it has given me permission to let go…your son’s words in this post and in the other post about his path being “in here” have brought a measure of healing and acceptance…thank you for posting. Many blessings to you and you family.

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