Support for all members of special needs families

At the Threshold

Tomorrow, Nigel and I are going to tour a local supported living facility that is a potential home for him in seven months. Now that he’s 18 and approved for adult services, he’s eligible. How did we get to this point?

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There is a part of me that is elated, I am sorry to admit. I have been his primary parent for 14 years, and a co-parent for four.  And I don’t have much left in me to give. I have been to every single goddamn IEP meeting for 15 years. Not just the annual ones – they happened more often than that for him. Add to that all the extra meetings and conferences with teachers, principals, therapists, and specialists. All the emails and phone calls. God help me. The phone calls – that there was a behavioral problem and I needed to leave work and pick him up. So.Many.Times. The doctor appointments. The blood tests. The changing of medications. The seizures, the horrible seizures and my resulting PTSD. The MRIs and EEGs. The picking up of prescriptions and their not being ready and my time being wasted. The forgetting to take his medication and me having to drive to his school to get it to him. The bullying. The bullshit of dealing with the teachers and school district about the bullying. Having to homeschool him because the school district suggested he be bussed to a different school district. And moving farther back, there were the years of screaming and bolting in grocery stores, restrooms, parking lots, restaurants, almost any public place. The extreme sound sensitivity. The not talking. The echolalia. The explaining/apologizing for his inappropriate behavior. The fear of the future.

But I am also elated about the prospect of him moving out because the past two years, since his epilepsy started, he has been very difficult to live with. By that I mean, as I mentioned in my last post, that he has become aggressive. He has also been verbally abusive to me. He has yelled at me and frequently says incredibly disrespectful things. I realize that a large part of that could have been due to his undiagnosed, untreated bipolar, which we are still jockeying meds to manage. But I am near the end of my proverbial rope. I am holding on – trying to – for seven more months until he graduates from high school with his modified diploma. I feel that I owe him that – staying home with me until then. He has worked as hard as he could to graduate with his peers. That’s all he ever wanted – what he said to me when he was 10 years old (and again at 12) – I just want to be like everyone else.

And it pains me to still see the differences. It pains me to think that, after everything we’ve been through, placing him in a supported living facility is the best I can do for him. He’ll still be able to take GED classes at the local community college. But I’m not elated about that. I’m also not elated that I’m having to “think of the future,” as my mother pointed out. “What would we do if something happened to you?” To be honest, unlike most special needs parents, I don’t think about that. I’m not sure if it’s because, as a long-term single parent, something has already happened to me: I’m a burned out shell of myself. I’ve had to do more than double duty for too long, and the thought of some other entity taking over soon is the only thing keeping me going. Or, the fact that I don’t worry about what would happen in my absence might also be because of a different something, something that parents of children with epilepsy try not to think about but that keeps us awake at night (check out #10 at this link). I may outlive my child.

Regardless, we are at the threshold of the future I previously feared. We are here – transition is now. In childbirth, as many of us know, transition is the period of labor that comes right before pushing. It’s the most intense part of the process and the contractions are the strongest. And the pangs I am experiencing now, before the last push in June, are incredibly strong.  I want to do right by him, because I love him fiercely, as much as I ever did, but his behavior is making me think I will not miss him! I know, it’s supposed to happen that way. Some birds need a little nudge out of the nest. But somehow this feels different. Probably because he’s such a different bird.   

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I tried so hard to ensure the best possible future for him. Understandably, I was crushed when what I thought he needed didn’t happen. But during this time of transition, I am realizing that what I thought he needed for a successful future might have been mere wishful thinking on my part. Even before he could talk, I have always thought that Nigel would succeed on his own terms. Sometimes, I just need to remind myself of that.



19 thoughts on “At the Threshold”

  • Tanya, I can’t even imagine what you’ve been going through for the last 18 years. If you ever need to get things off your chest, please do not hesitate to call. Happy thoughts and lots of love coming your way! Love, Ann

  • I am so grateful, as always, for your honesty, for your bravery in sharing your feelings and for your insight and experience. I can’t imagine how hard this is and will be — and I wish you much continued strength and courage. You — and your sons — have so much grace.

  • Breathe! You’re almost there, Tanya. I love you so much!

  • As Pipers only participating parent, I relate to your story very much. She’s aggressive now at 9 and I fear for her and our future. What if she cannot gain control? She’s getting bigger, and stronger. I fear the onset of seizures. I fear my own death, and hers. And I fear becoming tired. I’m burning both ends, how long can it last?
    I just want you to know that it helps when you write. It helps me know I’m not alone.

  • Tanya, OMG…here we are once again feeling the same feelings and dealing with the same dealings. It is NOT fun. Sometimes, instead of worrying about something happening to me, I wish something would happen so I wouldn’t have to live theu the pain and hurt anymore. Not like I’d take my own life, but if something happened I would be free of all the BS.

    I guess the difference this time is that Kaeden is already living in a group home about 90%, but even after the past 4 years of doing so, I am still unable to accept it. And now, it’s time to start searching for his next home, his forever home?, and not the one I had ever hoped for for my son. It sucks, really and truly, this process just sux.

    But, like you, I am sick of being disrespected and abused by my child. When do you finally say enuf is enuf? And then when we have a good day, all those bad ones form the past 3 months seem to disappear and the light at the end of the tunnel shines bright and suddenly there is hope that all will be fine and then..BOOM…in one second, crash…the light leaves our eyes and our hearts become3 hard and cold…

    I’m sorry Tanya. I’m sorry that we have to live such a life. I still pray that one day, one day we can accept it and it will be okay…many hugs my friend.

  • Tanya, thank you again for being so open and honest. My heart hurt to read the pain and struggle of your words. You ARE doing right by your son. You are. Keep your center and keep moving forward. You and Nigel will get there. xoxo

  • Oh my sweet friend. You have always done right by him. And you always will.

    Our job is not to *be* everything that our children need, but to help them find it.

    Love and hugs to you both.

  • I understand your feeling of relief. Somedays I want someone else up deal with the vocal stimming, playing with his shit, sticking his hands and head in the toilet, endless requests for food, peeing the bed, biting me and the girls occasionally. I want what’s best for him. I fear the day I can’t provide it but I will most likely welcome it too. I live under constant siege.

    You have provided so much guidance for me offer years. I love you. Wish I was closer so I could help you. xoxo

  • My dear friends and family, thank you all for your messages of love and compassion. I don’t know where I would be without you! I am so very grateful to have you in my life. You buoy my spirit and remind me that I am never alone.

  • Tanya,

    I don’t have the right words, only love. My heart really goes out to you, you’ve been to hell and back with this boy, and remain his biggest advocate.

  • Tanya, this is heartbreaking and I really don’t know what to say to you. There are no words and you have explained it all so well. I can only hope that by doing so, by getting it all out here, it helps you with this major transition for Nigel. I cannot help but think that perhaps a bit of space will give you the emotional space to miss him. I know it’s completely different and perhaps a bit naive of me but a lot of 18 year old move out (and here I quake at the thought that that’s only 5 years away for me!!) So my wish is that this is Nigel’s equivalent move, that it will be somewhere he will be happy, content and able to find his supportive yet independent niche in life and visits with his family 🙂

    Hugs…. ((xx)) Jazzy

  • Tanya, I hope everything went well with the tour for both you and Nigel. Hope to talk to you soon!

  • Totally understand how you feel, whether NT or “special” young men are young men and when they arrive at this age they have different demands, their wings are starting to flap.

    Everything will be fine and you really need to treat yourself to a special spa day, one of many I hope.
    Hugs from overseas.

  • Love to you…I can so relate…..that first paragraph, (minus the seizures) could have been written by me but no quiet as eloquently.

    I am starting here in your blog and reading forward. I am here now with Kev. He is 16 and I am just so freaking tired….but I love him…so much…The aggression, the disrepect, the unreasonableness, school, therapists, dr’s, meds, pharmacies, everyone looking to me for an answer, bad news, bad behavior……all the crap!

    But the Love…it doesn’t stop…it can’t. I can’t stop. But I am exhausted.

    It helps to read these words and I cannot thank you enough for sharing your journey, your feelings, your heart….I look forward to reading more.

    Love and peace to you and yours….
    Donna

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