It’s Time

This is the week for me. The mad-dash week before school starts. All parents know how it is with registration, getting school supplies, checking schedules, that kind of thing. And all special needs parents know how it is with the added emails, calls, meetings, walk-throughs, etc. that are necessary in getting our children set up with the support systems they need to be successful. In a transition year – either starting at a new school or at a new level of school – those efforts are doubled.

This year Nigel starts high school, so he’s at a new level and a new school.  With all the stress I’ve been experiencing lately, I feel like sitting in a corner and rocking, stimming my stress away. So far it’s gone smoothly getting things set up for him, but there is so much time, effort, and energy (mental, emotional, and physical) involved that I feel like I am nearing a breakdown. I so want this to work for him. I want him to be comfortable and confident. I want his needs to be met. I want him to be accepted and appreciated. I want him to focus and learn and also have fun. I don’t want to worry about getting calls at work about behavioral issues because someone has purposefully pushed his buttons. I don’t want to worry about what our options are if this doesn’t work. Please, please, please God, let this work. Let him be happy.

We went to registration today, and then met Nigel’s new case manager. How must this woman feel? I’m sure she’s aware of the fact that we special needs parents place so much hope in her. I know she’s aware of that. In fact, she must have picked up on my desperate vibe, because at one point she said to Nigel, “I’m your school mom.” No one has ever said that before. And I wanted to cry and hug her and thank her because she obviously gets it. She knows how important her role is. I sometimes wonder if these professionals who work so tirelessly with our children, who are devoted to their success and well-being, feel the strain that we parents feel at the beginning of the school year. This combination of hope and anxiety. I should come up with a name for it. After all, it’s not just at the beginning of the school year that I feel it.

Anyway, when she said, “I’m your school mom,” Nigel gave a small, cute smile, like he thought the idea of a “school mom” was silly. But I sensed that it comforted him, and he understood her meaning. In that brief meeting, she really listened to him. I could tell that he felt respected, and comfortable. The regional autism consultant, who has known him since his nonverbal days, was also at the meeting, talking about his strengths and making recommendations. His speech therapist from the past three years was there, and we found out that she would continue to work with him and facilitate the social skills class that he will take. I feel very optimistic, even though the anxiety is hovering in the back of my mind.

However, the bottom line, the “take-away,” is that Nigel didn’t just attend this meeting. He participated. He was slow to answer at times, rarely made eye contact, and was frequently off-topic with his requests and comments, but he was an integral person. And he even remembered to cover his mouth when he yawned, which shocked me after all these years of telling him it’s the polite thing to do. I swear I think it was the first time he ever did it on his own.

But at this meeting he accomplished things that were so much more important than being polite. He spoke up and discussed his needs. He told us which subjects he needed to take at the lower level, and which he didn’t. He mentioned his experience with bullying. He advocated for himself. And I am sitting here in tears as I write this, because the boy who, at the age of five, could not tell a doctor his own name is now advocating for himself. He really is. And I sense that this is only the beginning. It’s like he’s trying to tell me, Mom, I got this. I know it’s not time for me to step back yet. No, there is still much more work for me to do.  But it’s time for me to let him step up. He’s part of the team. Yes, he is.

28 thoughts on “It’s Time

  1. Macrina

    yes, how stressful and hopeful it must be! It sounds like Nigel’s case manager is a good fit. I’ll be praying for you guys next week!

  2. Danon

    This was a very great story. Honestly, it had me tearing up! as I read this, I place myself in this position and hope that, I too, will witness my son advocating for himself. My child is very young still(4) and we have a long way to go. But he too does not speak yet. We only hope he will be able to attend real high school. I feel so happy for you. Although it is a scary step, and honestly, after being his every move and his biggest crutch, it must be hard to see him go. But it must be great to know he can do it. Knowing there is that level of success all parents hope for in their child. I applaud you for your hard work, and your great story. The road never ends, and that is okay. It is the simple things like first time covering of yawns that make this journey so great! keep up the good work

  3. Chapati

    That must be really stressful, I’m glad you seem to have a good case manager to help!

    I want to show my admiration once again that you want your child to grow independent and self-reliant, and are willing and able to give him the room to do so. I come from a community where that happens far too little.

  4. Paulene Angela

    As parents we often worry too much about all the things that can go wrong, instead of right, I know I am guilty of that. I feel your stress level.

    Nigel advocating for himself is absolutely amazing, such a vital stage in his development. Look how far you have all come, wow!
    As you say it’s still not time to step back, but may be a little to the side is okay !!

    My son returns to school on the 10th of this month. I’m busy working on his after school activities like sports. Not an easy task as the “good will” of the teachers will decide our registration.

    Wishing you all the best for a smooth start.

  5. Jenn E

    Look how far he has come. I can only hope, wish and pray for my starting to get verbal charmer to make as much progress as Nigel. (Working the boy over 5 days a week with extra therapy in addition to school goes without saying!

    Here’s to Nigel’s best school year yet!
    xo

    Jenn

  6. rhemashope

    ‘And I sense that this is only the beginning. It’s like he’s trying to tell me, Mom, I got this.’

    Yes. Relax in that if you can. I feel so proud of Nigel eventhough we’ve never “met.” He continues to give me hope for my little one.

  7. M

    “He advocated for himself.”

    In large part because he’s had an amazing mentor. The way you are so consistent, intelligent, dedicated…there’s no question that he’s absorbed your approach to his issues. There is: what you do for him. And then there is: how you do it. He’s benefitting from both. The first has helped him get his needs met. The second has given him a great model of how to advocate, when to advocate, the necessity of it.

    I think the one thing people tend not to get (the general public, people not connected into autism issues) is the fact that every single step is uphill. There are no days you get to relax, not worry about it, coast on autopilot. If Nigel is in a public setting…and especially a highly social environment like school…every day requires vigilance, effort…it’s all uphill. So, like you said, it’s nice when you meet a case manager or teacher who gets it. They know: that constant attention to detail, his specific issues, is necessary.

    I hope it’s okay if I ask, I understand if it’s not: how is it going with the medication? It seemed like that was an important part of his school experience last year, but I wasn’t sure. I didn’t know if he was taking the same thing (depakote?), at the same level…and whether or not he feels like it’s helping.

    So, big step: congratulations. Just getting started with high school is obviously a big deal. If more people had a fraction of Nigel’s toughness, integrity, this world would be a much better place.

  8. goodfountain

    Your post moves me to tears as well. What a great kid Nigel is. I just love to hear about him.

    And I really agree with M’s comment -and hoping that I’m doing right by Charlotte.

  9. Meg

    Crying here, too. What an amazing meeting you had. I love that you notice all the details. Congratulations on reaching this incredible milestone in Nigel’s life (and your’s)! What a journey.

  10. Sheri

    I love how far he has come. I recently was sorting through old files and Big Red’s changes from diagnosis to now are amazing to me as well…oh some things will probably never change (like his handwriting) but he’s come so far….I give so much credit to the amazing professionals who’ve helped him along the way.

  11. Casdok

    Nigel has come a long way and will go far. You must be so proud.
    Hope it all goes well for him and for you to come down from all the stress. I know the feelings well.

  12. Jen

    Good luck- we just finished our first week of school. One of my autistic kids just started high school, so I can empathize with your stress. It sounds like Nigel is off to a great start…I’ll keep my fingers crossed for the coming year!

  13. Kim

    I am in tears! It sounds like he has come so far and I have such high hopes for him in the upcoming year. How very wonderful that he participated in the meeting!!!! And the “school Mom” comment made me melt. For someone to understand on that level is what we all want. It is these stories that comfort me when I quickly glance in the direction of “the future” and then quickly come back to the present. Lovely post.

  14. Audra

    I know that “combination of hope and anxiety” very well. This week or so before school starts is always a doozy for me too, with my emotions veering wildly between hope and anxiety on practically a dime.

    Congratulations on this momentous milestone for you and N. Your words have done much to dial back the anxiety and turn up the hope, big time. For now at least 🙂

  15. Corrie

    Thanks for sharing about raising a teenager with autism. My son is about four years behind. It gives me encouragement and hope to ready about Nigel.

  16. Roya

    Thank you so much for your story. I am in the same situation, My son just turned 13 and will be attending High School this year.
    I totally understand how you feel, I have been feeling very anxious myself.
    My son have been in elementary school for the last 8 years,( from kindergarten to grade 7 ) and this will be a big transition.
    He really tries to fit in and there are times that I find him in his room crying, this breaks my heart.
    I wish he could share his feelings and let us help him. I am so very worried….

    My husband and I will be off from work the first week of school to meet the staff and just be there if he needs us.

    You know, it makes me feel better that I am not the only mother who is worried, I will keep them in my prayers.

  17. michelle oneil

    Wow. Amazing. I know the anxiety and I hope he got off to a good start. Such a sweet boy. You are such a great mom.

    Educators who get it are worth their weight in gold.

    P.S. I just yawned in his honor. It’s contagious!

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  19. Tanya Savko Post author

    Everyone, thank you for your kind words and support.

    M, definitely okay to ask about the medication – all part of disclosure to promote awareness. Nigel has been taking Risperdon and Zoloft, and still doing well with both of them. I’ll probably have him continue taking them for at least another year, and he wants to continue taking them as well. We’ll probably have to increase the dosage, though, as he grew a lot this summer!

  20. Val O'Donovan

    Thank you for sharing this Tanya. It’s a fab post. I’ll be facing a change of school in 3 yrs with my guy and already I’m worried about it!

    The progression to a higher school is so worrying, as is the change from child to teenager. So much for all to cope with. It’s worrying enough for parents with NT children let alone Special Needs parents!

    So good to hear your guy “gets it” and is starting to self advocate. Well done Nigel! And well done you.

    I can only wish that my Wiiboy gets a “school mom” when he goes to secondary school (high school). He currently has an SNA (Special Needs Assistant) but in Ireland this does not continue into Secondary School. x Jazzygal

  21. Tera

    I don’t want to worry about what our options are if this doesn’t work…

    i reread this post today and this just flew out at me. oh, i don’t even want to consider it. i am so scared. kaeden is doing well in his new home because it is new and new always brings a few months of goodness with it. however, already, school is not going so well. 2 weeks in and it already begins. how can i not worry? how can i begin to fathom the following option? all i can do is pray.

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