My spouse and I were talking the other day about how our sweet girl with auditory processing disorder has always needed more reassurance than our two non-APD boys. She asks five, six, seven times every night if we've locked all the doors. She tells us all to have safe dreams before sleeping and insists we tell her the same thing and it can't be "good dreams", it has to be "SAFE dreams".
It's not just the night time sleeping that brings concerns for her. Whenever I (being mom) leave the house without her, she looks at me deeply in the eyes and tells me to drive very, very safely and be very, very careful to not get hurt and come home to her safely. Then she gives me at least three hugs and longingly waves me off. She is worried that something will happen to me and she will never see me again. I think this is because she still relies very much on me for support; I'm the one person in her world that truly understands her.
My spouse gets concerned that maybe this is not the APD, but I really feel that it is. I imagine that if I lived in a world where I understood sometimes as little as half of what I heard each day, I'd feel pretty lost and confused and scared. I would rely that much more on those I trust would support me and care for me and always be on my side. It just makes sense to me.
As our sweet girl gets older, she does make strides in her comfort level with living in this world. She used to never be able to be away from me at all without acting fearful; now she does let me leave for several hours away without her and she functions just fine, enjoying her life. She used to need constant sensory support such as something to chew on and her little blanket "Nonny" to hold for support, but she stopped carrying Nonny and she stopped needing to have something in her mouth. She used to need me to do things like go into the locker room with her at ice skating and now she asks me to stay out so she can be on her own like her peers. When she was little, she did sleep in our room with us until she was seven years old; we let her decide when she wanted to sleep in her own room. (We did the same for our boys of course.) Now she always sleeps in her own room and even feels comfortable staying the night at her friends' homes. So as time goes on and she gets older, she does feel more "safe" and doesn't need as much support as she once did. Maybe she hasn't been on the same path as her peers and maybe her time frame has been different, but it is her path, and in her time, and therefore it is what works best for her.
I am a firm believer that children grow in the times and ways that work best for them and if she has more fears, then I will help her through them by providing the support she needs now, showing her how to support herself but not taking that support away from her until she has asked for me to do so; she knows herself even better than I know her and I respect that. I want her to know without a doubt that I am there for her whenever she needs me, without judgement and without fear that I will suddenly just stop when she isn't ready for me to do so.
It's not just the night time sleeping that brings concerns for her. Whenever I (being mom) leave the house without her, she looks at me deeply in the eyes and tells me to drive very, very safely and be very, very careful to not get hurt and come home to her safely. Then she gives me at least three hugs and longingly waves me off. She is worried that something will happen to me and she will never see me again. I think this is because she still relies very much on me for support; I'm the one person in her world that truly understands her.
My spouse gets concerned that maybe this is not the APD, but I really feel that it is. I imagine that if I lived in a world where I understood sometimes as little as half of what I heard each day, I'd feel pretty lost and confused and scared. I would rely that much more on those I trust would support me and care for me and always be on my side. It just makes sense to me.
As our sweet girl gets older, she does make strides in her comfort level with living in this world. She used to never be able to be away from me at all without acting fearful; now she does let me leave for several hours away without her and she functions just fine, enjoying her life. She used to need constant sensory support such as something to chew on and her little blanket "Nonny" to hold for support, but she stopped carrying Nonny and she stopped needing to have something in her mouth. She used to need me to do things like go into the locker room with her at ice skating and now she asks me to stay out so she can be on her own like her peers. When she was little, she did sleep in our room with us until she was seven years old; we let her decide when she wanted to sleep in her own room. (We did the same for our boys of course.) Now she always sleeps in her own room and even feels comfortable staying the night at her friends' homes. So as time goes on and she gets older, she does feel more "safe" and doesn't need as much support as she once did. Maybe she hasn't been on the same path as her peers and maybe her time frame has been different, but it is her path, and in her time, and therefore it is what works best for her.
I am a firm believer that children grow in the times and ways that work best for them and if she has more fears, then I will help her through them by providing the support she needs now, showing her how to support herself but not taking that support away from her until she has asked for me to do so; she knows herself even better than I know her and I respect that. I want her to know without a doubt that I am there for her whenever she needs me, without judgement and without fear that I will suddenly just stop when she isn't ready for me to do so.
I have a younger son with Central auditory processing disorder and he is sometimes fearful. I think you are right that when you can't figure out the mutter mutter in the world ---it is frightening and you want to have stability. My younger son used to cry continuously when I put him into a play school while my older son barely looked up from his play. Parting was difficult for him because now that I think about it --I was his anchor of stability. He still locks the garage door when he is at home alone. It's all about making the world accurate for yourself and with APD it is hard to do this and I suspect these children will have to row very hard as adults and expend more energy on making sense of the world than children and adults without this condition.
ReplyDeleteHow can we help them? It is important to be sensitive, try not to be judgmental and love them to pieces.
Love is the best way to help a child or adult with APD or really anyone.
<3 Thank you for sharing Julie.
DeleteHi Bev. I just found your blog after reading Hailey's chapter in Same Jorney, Different Paths. I have a 10 year old daughter who has APD and displays SO many of these same fears. When I do anything without her she is fearful for my safety. She slept with us until she was 6 on a consistent basis and then slowly began to feel comfortable on her own, but only if we're near her room. If I go downstairs to exercise or sew she doesn't like it still. (Okay during the day but not at night.) She also has a special bear that she carried with her ALL the time but has finally decided that "Bea" can stay on her bed. This is partly because Bea is wearing out and she doesn't want her to completely disintegrate. We also home educate so she is able to go in and visit her bear as needed. She has recently mentioned to me though that she wants me to get some of the same type of fabric her bear is made from so she can carry a small piece with her when we go out so she can have it when she feels the need.
ReplyDeleteThank you for sharing Hailey's story. It's comforting to know that we are not alone.
Awe, that is so sweet about her Bea. :) Thank you for commenting. I am so glad that you have found the book and this blog to be comforting/helpful. That has been our intentions and I know I would have loved to find something like this when we first started our journey in APD years ago.
DeleteI am "anonymous" because my son is 15 - and very intuned with the internet. It is hard enough to suffer with APD - without the world knowing your Mom is in "chat rooms" talking about you :-). Your quote really hit home: "I think this is because she still relies very much on me for support; I'm the one person in her world that truly understands her". My son has been in speech therapy since he was 2.5 - we have taken him to many specialists over the years. We live in "small town" Texas where we have very limited resources. Recently I had him tested in Austin and received the report yesterday. Not surprising was the diagnosis of APD. However, part of the report included a very direct observation from the assessor that my son and I have a "dysfuntional" relationship. This stemmed her observation of his insistance that I stay in the room with him through the two hours of testing with her. I felt her assessment was "harsh" - but, also stung with reality. I AM his voice and his rock -- and as you said, the person that "gets it" with him. He can communicate with me when he can't "find the words" with others. He knows I don't think he is a "freak". I see his since of humor and his wit - -something that others don't ever get the opportunity to see. Anyway - I'm rambling. Reality is - however, that at some point he needs to learn to face the world without Mom. To find his own coping mechanisims. It is exhausting for me, as well, to be so "needed" by a teenager. I have an older daughter who is now grown and gone - she was the most independent child you could find. So totally opposites. Anyway, moving forward - I'm going to read the book. I'm going to reach other to other parents who are in similar situations. I'm going to get counseling for my son, myself (together & separately) - and maybe my husband too. We are going to start the iLs listening program and it was suggested we do the LEXIA strategies for older students. One step at a time....
ReplyDeleteWow! I am actually disturbed by this assessor's note and feel it was inappropriate of her to write it in the report. You are the one he trusts and he was in a scary situation: auditory testing for 2 hours when you have APD is very stressful. Please don't let it bother you too much. He will grow to become more self-reliant and yet still be able to trust that when he really needs you,you will be there. I think our children might need a little more time to reach some of those same independence milestones and that is okay and in fact, very understandable. The fact he trusts you shows how good a job you have done at parenting. :)
DeleteI think you'll love the Facebook support groups; everyone is very giving and considerate, with lots of different experiences and advice. Some of our teens and adults can express their viewpoints from having APD too, and I know many of the teens have found it very comforting to meet others like themselves.
Good luck and happy parenting. Your son is lucky to have a wonderfully, supportive momma like you. :)