My biggest fear for Madison since we began this adventure of Sensory Processing Disorder is that people/kids would notice her differences and make her feel bad. When she was younger it was pretty easy to explain some of her behaviors. If I got the look that questioned why I have not removed my child from the room or the roll of the eyes implying I was “too easy” on my child, it was fine. I would just let people assume it was me, being a bad parent, and she was just acting “that” way because I allowed it. As important it is for me to appear to be and in fact be a good parent, I would rather have myself judged than have someone judge her.
A little over a year ago I noticed that Madison had some kind of obstruction on her face that resembled a mole or pimple. I treated it as such but nothing seemed to make it disappear. I knew if I could just find the right stuff it would go away because at times it seemed to get better. Then we went through the process of trying to see if it was related to something she ate. I then mentioned it at a doctor’s appointment and we were given a referral to the dermatologist. Through out these months I was shocked at how many adults would see her and ask me, in front of her, “What is that on her face?” Once I got over the shock of the rudeness, I stated it was a blemish. For some reason, people seemed fascinated with it and would offer various diagnoses and cures. Just so the ridiculousness of this is truly understood, the blemish was no bigger than a mini M&M. She started to get very upset about the blemish and began to wear her hair down so it fell in her face. I couldn’t believe my four year old was so hurt/bothered by comments from others that she felt she had to cover it up. I didn’t mind people asking or being curious but there is a way to do it. Most of my friends and people we know asked me what it was but not in front of Madison.
I bet you are wondering what it turned out to be. It is some type of cist that I can not pronounce or spell, and it was benign. She did need to have it removed and after a few months you can hardly tell it was there. No one who ever questioned what it was has shared that they have noticed it is no longer on her face.
Two reasons I shared that with you. The first, we as a society need to stop focusing on the negative and focus on the positive things. We are surrounded by horrible happenings all the time. It is on the news when we wake up, the radio in the car; you receive it when you log on to email, yahoo, phone or computer. When most people share current events it is about something bad that has happened. Is it because if we feel if we take note of the bad events and feel bad for others, then maybe it won’t happen to us? I know it is easier to find the negative topics but we have to try to find more positive things so we can stay more positive. One of the best stories I heard over the holidays that made me feel really good about us as a society, was all those everyday people who paid off strangers lay away bills. That was amazing beyond words.
The other reason is that Madison will start kindergarten in September and I am not sure how she will do and how others will react to her. We have had a great preschool that have been so understanding, and accommodating. In Virginia, we go to Kindergarten all day and by the time she does the bus she will have been up and going and beyond over stimulated for a minimum of nine hours. Whew!
I have my letter all ready and know what I am going to say to the teacher but I still fear for her. If adults can be so critical about a blemish on the face how are kindergarteners going to react when they perceive her to be overacting to a situation?
I know I will always worry about her and fear for her, just as I do my other kids. I just wish I didn’t have to. This is when I am truly thankful that she has the personality she has, no matter how crazy it drives me!
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.
Maddy is such a beauty – inside and out! I know how much you worry for her, and I know that SPD will force her (and all of you) to tackle some issues that others may not have to deal with, and I wish that weren’t true. But I like to focus on the positive as you said, and I know that Maddy has a strong, smart, proud mamma who always has her back; a dad that adores her; brothers that will always protect her as best as they can (and who have learned so much about compassion and being sentitive to others because of Maddy); and family and friends who love her dearly. Combined with that Maddy personality? Well, she is sure to be a shining star in everything she attempts!!
Your daughter is absolutely lovely! My son, who has SPD, did ok in Kindergarten because at our school it was only half a day. First grade was rough, and we had a lot of discipline problems. I spent a LOT of time at the school, not necessarily with him but just being present makes a difference. I know this doesn’t sound great, but I’m just telling you the truth. If the teachers and administrators know you and you gently educate them on SPD (I’m assuming they are like many schools that don’t really ‘get it’) it will make a difference in how they react to her. You have my email now – please reach out if you need any help and I will try my best!
I am new to this stuff. My son’s doctor told me about his concerns with my then 7 year old son’s behaviors and how the are similar to children with SPD. I had been under the assumption, all those years, that my son was just being difficult. Even after his make-shift “diagnosis”, I had no information other than the doctor telling me to continue to expose my son to ther things that make him uncomfortable in order to desensitize him. It took a friend of mine, who has two children with SPD, to realize that my son truly has a unique way of viewing what most of us consider normal sensory scenarios. I guess my reason for responding to this is that my son has been reacting to things “oddly” his entire life and he does not have any short comings because of it.
I too am new to SPD. Just recently, my son and daughter both have been diagnosed with it. My son is 6 and my daughter 3. Everyone kept telling me they had ADHD and to medicate them. I didn’t feel this was correct. I have a lot of children in my inner circle that are diagnosed as ADHD and my kids only showed some of the same symptoms as them. To me that wasn’t enough to medicate them for something I wasn’t sure about. I have had a lot of “issues” with my kids that nobody could understand or explain until I had my daughter at a Physical Therapy appointment (for somthing unrelated to SPD). During one of my sons melt downs as I call it, the OT was watching and asked me how we were doing and I broke out in tears explaining to her that I didn’t understand what was going on. After a long conversation with her she told me to have my pcp refer us to OT for an evaluation. If it wasn’t for her I never would have know what was going on with my babies. I was always scared to go out in public with my kids because of the looks and comments we would get if there was a melt down with one of them. Now I know there is help and things can and will get better. Now instead of wondering where I went wrong as a momma I know I didn’t do anything wrong. And my kids can have a positive future. I am going to focus on the positive things we CAN do and learn together with them how to make things better for all of us.
Crystal…that was a wonderful comment. It takes alot to be positive in such a negative driven world. I promise, once you figure out what is going on with your kids (sensory speaking), your response and outlook will be totally different. I no longer fear taking Madison out or if it is a bad time, I can plan to avoid it : )
If you look back in the blogs on the site, many talk about being a detective. You just do alot of watching and experimenting until you find out what works. You WILL enjoy the little things and see such amazing changes in your children. They know that we finally understood what they themselves could not define nor understand. You will also start to care so much less what “others” think. I use to feel I had to follow up everything with, “uh…that is part of her Sensory Processing Disorder”. Now, for the most part, I don’t even notice. My getting upset with her behavior only made it worse. Big Tight Bear hugs work so much better.
Hang in there..you are off to a great start. OT’s are such a great resource. Continue to use this site…new info and support are always waiting. Feel free to send an email if you want to vent, chat, or just have some questions!
Nicole….I am so glad you have support and resources in your friend. It is so hard to want to understand what is happening and make it better but you don’t know how. Our kids do deal with things differently, but they do not have shortcomings. I think they are just more tuned in to the world and we just need to help them to handle it. Madison is amazing. Her having SPD has been a blessing. My family, friends, doctor, schools, and myself have learned so much about patience, love, tolerance, compassion, consistency, persistance, and etc. She has positively impacted and helped so many people just being who she is. I am so proud of her and find her so amazing. I am so glad to see you celebrate your little man just as much. He is lucky to have you in his side…
Jen..thank you so much for being honest. I do plan to be as present as they will let me be. Our preschool has been great about that and our Elementary school is well respected. I am planning on meeting with the guidance dept and teachers who will be working with her. I have had a great opportunity to introduce her to the school and how it works through my older son. We go and have lunch in the caf. and have spent lots of time at activites.
We will see and I will be reaching out for your help…..feel free to contact me too. Thanks so much for reading and for being there to provide support and info. Take care and hope to talk to you soon!
amyb0213@yahoo.com
Jodi…she is so lucky to have you on her side. I will never forget when you got your first real experience of Madison and her “moments”. What a trooper you were. It is so amazing that those so close to you may not even see it but when they do…..wow!
You are so wonderful with her and I am so glad you are aware of what SPD is. You have educated and helped so many people because of it. In addition, you so get me when I am losing it : )