I would really like to thank everyone who has read and commented on my blogs. When I read some of the responses to the blog about others understanding of Madison’s behavior, I am overwhelmed. I really felt that I had made some of you feel better and hopefully eased some of the difficulty of these situations by saying it is alright to feel that way and you are not alone! I feel so understood and not alone when I read what some of you have written, so thank you and please comment again!
I hope that no one is offended by my honesty or feel that I am complaining and only focusing on the challenges of living with a child with Sensory Processing Disorder. I do feel so blessed to have her and she has taught me so much about myself; resilience, and determination, just to name a few. It just seems like I need to vent or write about the challenging stuff. It is a great way to get it out and maybe get suggestions on how to handle them better. I need to remember that I also need to post the positive things; there are so many wonderful moments that need to be heard as well.
Madison is truly an incredible child. She never ceases to amaze me and always keeps me on my toes. For every moment of frustration and disappointment there are also moments when she can make me feel like no one has ever made me feel before.
She has been having issues that come and go with dressing and undressing. Some days she can (when she wants to) and some days she can’t. This is a constant struggle and source of frustration for her and me. I find it so difficult to help her and be sympathetic when she is refusing to do something I KNOW she can do. She ends up getting so out of sorts, as do I that she gives up or breaks down.
The other day I asked the children to put on their clothes so we could go to the park. I had the clothes laid out, tags in the back and all that was needed was to slide in. When I returned from getting myself ready I saw all three sitting nicely, dressed, with shoes and ready to go. I was astonished! Madison ran up and said, “Mommy, look what I did….Are you so proud?” I was, and made sure she felt how proud I was. She walked a little taller that day and smiled a little bigger.
I am also amazed at how she has my Dad (and most men in our life) wrapped around her finger. She asks and they do. She gives them a big smile, talks so sweet and gives big bear hugs, and they are done. Last weekend she wanted to ride in Papa’s corvette with the top down. When Papa called she told him she wanted to ride. Shortly after that, there he was with the corvette and car seat. She got in, waved, and I envisioned this as her homecoming parade car when she got to high school. I pray she will be able to enjoy all those wonderful moments so many of us take for granted.
She is also amazing to be around in public. She is so friendly and chatty and can light someone up when she talks to them. Most people we run into thoroughly enjoy her antics. Finally, at night, when I tuck her in, she amazes me the most. She always gives me a great big hug and kiss, smiles like the sunshine, and tells me how much she loves me. No matter what the day has been like, what she or I have done, none of that matters when we say goodnight. What a great way to end the day!
The New York Times recently published an article talking about how parents love their children but hate parenting. What a great way to put it. I love my children dearly but I do get tired of the routine and the upkeep, and feeling like I NEED to make sure my children are happy, smart, and successful. I alone can not accomplish this. Trying to make moments, teaching moments or figure out how this will affect them later is maddening. Providing consistent structure and discipline to the right child, at the right time, in the right way is overwhelming. The moments I love and when we sit and play a game of Caribou Island. It is an incredible game, lots of fun and educational. Most importantly it does end and most of the time in about 15 minutes. I also love when we sing in the car, dance, cuddle, laugh, and when for no reason one of them will say, “Guess what mom?” I of course say “What?” Their response, “I just love you!” My heart melts! That is when I know I am doing ok and all of the tough “parenting stuff” is more than worth it.
AMY BORNHOFT lives in Virginia with her husband, son, and twins (boy and girl). She works for Soulcial Solutions, developing new business and Child Development Resource Center, raising awareness and funds. She also facilitates a support/resource group through Parent Connections at the Sensory Processing Disorder Foundation. She would like for readers to identify with her families experiences and realize they are not alone. She also hopes parents will open up about the positive and negative impact Sensory Processing Disorder has on their lives.
Wow reading this was like reading my own words out of my journal. My daughter, almost 3, was diagnosed with SPD at 18mths and we immediately started OT. She has made long strides and though we see SPD daily in her life she is doing wonderfully. She is that little girl who has all the older men in her life wrapped, she is that child who can make anyone smile and we have actually heard from other adults how she brightened their bad day. And she can have the worse day that we have seen but at night she climbs up in her “big girl bed” and as I tuck her in I get the biggest bear hug and biggest kiss and she tells me over and over again how much she loves me…she actually told me the other night, “Mommy thank you for taking me to therapy and thank you for taking me to play group and most of all thank you for pounding on my back and feet. These all really make me feel so much better” I knew then everything I have done, I have done right!!
I just came across this in a desperate attempt to find help or advice for dealing with kids with this SPD. I only a couple months ago found an Occupational therapist who properly diagnosed my son. I have for the last 2 yrs been to dr after dr to try and figure out what was going on with my son. After being told numerous times that it is a discipline problem and its my parenting (which CRUSHED me) I found someone who took everything I said was going on and clearly told me what my child was dealing with. First though I will say that I have never met a child sweeter, more considerate, affectionate, loving and intuitive then my son Alex. When I was told he had a definate learning disability and this Sensory processing disorder I was both relieved and frustrated again. I am glad the OT that he sees understand whats going on with him but he has made little time to discuss things with me and I think I need another resource to help cope with the INSANE behavioral issues that are now coming up since the school year started. I dont want to write too much bcuz I am eager to read more but I really really need other moms to talk to about this. I am a overwhelmed and lost at the moment. Thanx for any and all who are there.
Brenda,
I’m feeling overwhelmed and frustrated, too. Although my son has not been formally diagnosed yet, my gut feeling (and from what I’ve gathered from hours of research and his teachers casually mentioning it), is that he is suffering from SPD. Preschool has been a nightmare. Despite numerous warnings, conversations, lessons and reminders about keeping his hands to himself, he seems literally unable to stop hugging, touching, bumping into, and otherwise keeping boundaries with his friends. It’s not in a threatening manner, and he’s not trying to hurt kids–but he is bothersome and distracting. His last preschool asked us in a very nice and indirect way to not have him return, so we are starting at a new school–and yet the problems persist. We (his father and I) have had people tell us that his problems are a direct result of our parenting–even though we have literally exhausted every option and don’t know what to do. Everyone has an opinion. We have heard the words ADD/ADHD thrown around, but he’s only 4 and I don’t think it’s fair to ASSUME that’s what it is. My son is intelligent, sweet, creative, intuitive and caring. He has so many, many wonderful qualities–but the behavioral issues always seem to take precedence and overshadow everything else. He doesn’t fit into the same “mold” his peers do, and his actions are always looked at as a reflection of our parenting. It’s frustrating. We’re not perfect, but we do the best we can.
Brenda, if you want to chat more please e-mail me, andreagauvin42@gmail.com
I’d love to speak with other parents who are going through this, and we can work to support each other–so often it feels like “us against the world.”
Brenda, you are so not alone i very much feel you. I really feel bad in pulic at times when my 3 year old is exxibiting some of the SPD issues, but at other times I just want to say, “Do you have a qestion?” when someone is staring. Wow, the behavior!!! It is really comforting to know others deal, and to have ideas of how to deal. My three year old is very active and I hope and pray that he will have teachers that are willing to gain knowledge of SPD. One day an issue in very ON and one day it is not, you never know. This past wekeend I took Grayson to a church homecomign celebration. I twas crowded and noisy. I knew it woudl be a little overwhelming for Grayson, but I also believe he needs some exposure. His outlet was to smell every single thing on his plate before he ate it. I mean a long, bog, nose in the food sniff. Well, he ate very little. But, we made it through and I think no one really paid that much attention to his behavior except for me. This was a good day. The bad times out can be really bad. But we as a family decided that we just cannot stay home all the time! I too want to read and share!!! I am very worried about school!! Thanks to you for shaing and thanks Amy for blogging! !
Hello everyone.. Wow I’m so glad I found this page..
I have been on quiet a journey thus far with my darling little Emma.. I’m from Ontario canada. I’m 35 years ok married with three children. My eldest Zoe is 13 my Emma is 10 and my son J.P is 9..
We have gone through such difficulties with our Emm.. She has struggled so hard in school and making friends.
Her self esteem is so low and we have tried to make her feel so important and just like the other kids but her response is always” you have to say that. You have to love me your my parents!”
Emma was diagnosed with Add but I knew there was just something else there! From the time she was an infant she was constantly moving swaying to music in her own little world. She was so picky with her food couldn’t sit to eat a meal! She would wrap herself in her Winnie the pooh soft fleece blanket and rock herself! Her clothes had to be a certain material and sit just perfect on her body or shed go into an all out melt down! Do you know how hard it is to find socks that don’t have the line across the top of the toe??
Emma was soothed by music and when listening to it would rock and hum along! Now alls she does is sing!
She is now 9 and struggles everyday at school and outside of school with her peers! ” no one likes me everyone hates me sometimes I just wanna die” this was a comment she made to me this summer at our tailed! I cried and cried after hearing her pain! How can such a beautiful free spirit feel this way?
Emma was introduced to her OT last year. She was amazing with Emma. She was the first one to explain to me that Emma had sensory issues and that there was an actual blockage of information happening with her. In order for Emma to absorb information she has to be moving!
I was so blown away that finally someone was seeing what I had!
I was just handed an article last weekend about children with SPD.. And I have to say i was speechless!
It was as if they were describing my child!
So now I’m taking her to our doctors next week and getting her a f
Referral to a centre in London Ontario! I finally feel like there is hope for her to become the amazing woman I know she wi one day be!
If any of you have ANY advice or could suggest what steps to take please email me I could really use the help!!!I need to help my baby girl feel the strength and beauty she posesses inside!!!
My email is
Serenity.4me@live.com
Thank you!!
Cara
I’m so glad their is a website for SPD! I love my son Sebastian he is a wonderful, brilliant, and the plain just acting silly for a laugh. The only thing is it’s only in increments this boy will go from 0 to 60 literally imagen we go through about 20 to 100 or more breakdowns I’ve also realize this affects these children in different ways but the same idea. I guess him being Gifted and also has SPD he gets so frustrated he explodes and children do get hurt not in a major way but the act is made Kicking, hitting. biting, screaming and so on. He doesn’t understand where his body is, he is in your space but he finds it difficult for you to get in his. I’ve started a blog about Sebastian and myself and look forward to speaking out about the LIFE PUT IN PERSPECTIVE
http://sebastianeyeswideopen.blogspot.com/
Hello there fellow moms! My daughter is 16yrs old and a junior in high school. We were told a couple years ago by a therapist that she fit the mold for a child with sensory issues. It’s kind of hard to remember though because she is so smart in some ways and yet so different in others. The fact that my pregnancy with her was so rough I think definitely had alot to do with it. Even at 16 she can’t do some common things that other kids and parents take for granted, such as crossing busy streets alone or making purchases in a store. It makes me a nervous wreck to think about her going off to college in a year and a half. I dont know how she will function in a dorm so far away from home but I also dont know how to address it. Anyone have any suggestions??