A Cincinnati Mom Needs Input -- Difficulty Making Friends Due To Sensory Seeking Behaviors

by Cathy
(Cincinnati, OH USA)

Age 6

Age 6

My daughter is 6 years old and does have a Sensory Disorder. We just returned from a trip to Disney in Orlando. My Husband, Daughter (Hannah) and I took this trip with our neighbors (Mom and a set of twins -- Girl and Boy, age 4). My daughter is a "Sensory Seeker" and we ALL knew that before we left for the trip. She has been through a year of testing, OT, PT and much more.

She tends to touch the 4 year old Girl twin more than the Boy. Especially pulling hair, pinching her arms and hugging hard. It became a real problem during this trip. I felt just horrible, but I know my daughter did not do this behavior to inflict hurt. She really could not help it. I felt like I was making peace with the 4 year old for the pain inflicted by my daughter at all times. We finally separated during our adventures at the Parks so our trip would not be so stressful.

As a Family we did have a great time and our memories will last a lifetime. We also have good memories with our neighbor friends, but something has changed. We have now been home for over a month. My Daughter is asking why she cannot play with her friends. It seems like we (my Daughter) has been avoided like the plague. I don't know what to say to her. I have been making small excuses but I really want to help her understand. I am afraid she is going to grown up without friends- since parents and children don't understand what she goes through daily.

I have asked the OT how to give her what she is seeking but have been unsuccessful. I met with a Mother at school who does OT at another school and she showed me a technique which helps her joints in her hands and arms to curb what she is seeking. But, how can I do this if she wants to go outside and play with no notice. I know that this is just the start of her friendship issues. I need guidance to help her get through this and be a little girl that all kids will want to be with!

To add a little more to my original story. Hannah tested poorly for Kindergarten and went to a ready start program in the summer at age (5). The teacher picked up on her not being able to process information and moving into others space during class. She mentioned it and after some thoughts of my own I contacted my pediatrician who referred me to Children's Hospital in Cincinnati and in November, 06 we met with a Dr. in the Developmental and Behaviors Division of the hospital.

From the testing they found that she had sensory processing difficulties, a Receptive Communication Disorder, Fine and Gross Motor delays, an adaptive skill delay, is at risk for language based learning delays, weaknesses in working memory and processing speed.

We started immediately with a physical therapy evaluation and continued with 6 months of therapy every other week. In that time she learned to ride a bike and her balance became better along with motor skills. She worked on strengthening and balance issues and also getting her aware of her self. Worked on the balance ball and arms and legs working together, etc.

We also had a Occupational therapy evaluation and continued with over 6 months of OT every other week. I am not sure what this person is certified in but I will check. She did improve in some areas but has not improved in the touching of others. We noticed that swimming does help with the territorial problems-- but she can't do that at all times. She worked on writing (since she switched hands a lot) and awareness of your own body space, catching, and climbing. She gave us a few techniques to use at home (deep pressure), wheel barrel type exercises. But she still has problems touching others and in loud places (restaurants like Fridays) will react with oppositional behavior.

We had an EEG and also a MRI done and both came back good.

She has had some speech intervention at school (15 Minutes-1 day a week) and also speech through our Children's Hospital. 3 months--every other week.

She receives some help in the classroom but not enough. She has an IAT and will meet on Tuesday 11/13 for another meeting to work toward an IEP. The school has a sensory center but without an IEP I don't think she can receive the help.

Also, someone mentioned cranial sacral therapy. Do you know anything about this and how it could help?

I hope that this will give you enough information to help us.

My answer is too long to be put here... CLICK HERE for the rest of the answer

Comments for A Cincinnati Mom Needs Input -- Difficulty Making Friends Due To Sensory Seeking Behaviors

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Oct 10, 2008
by: Anonymous

It has been several months since I updated on my daughters condition. She is doing well in school and started dance class. She just loves it. She is so happy after she comes home that it must be giving her the stimulation that she needs. She is also bowling on a league with her Dad and the weight of the ball is great therapy. I have found a niche for her and we see a new and happy girl.

Aug 21, 2008
Thanks for your comments
by: Cathy Petersman

My daughter has come a long way since my initial posting on this site. As you have mentioned, I have also noticed that Parents are not very understanding or really want to understand the difficulties of a child with sensory issues has. In the last months I have distanced myself from the other Mothers and allow my daughter to play with the kids but I am not going to defend or even get involved in the discussion about my daughters behavior. We just returned from a 10 day trip to Phoenix and she played with family friends there without any problems. I believe that our neighborhood kids have targeted my daughter for any and every fault. A new school year is coming and I see so much more maturity and are hopeful of a successful year with a IEP in place!

Aug 18, 2008
My son and SPD
by: Bernadette Murray

You are doing a great job so far! This is such a hard disorder to educate others about and it can be so frustrating. Keep with it!

My seven year old has SPD with many areas to much to talk about. But one area that we're still having trouble with is his need to touch others. He too went on a trip to Disney and was all over his older cousin for the entire week. Luckily for us, all of the family is very supportive of his condition.

That cannot be said for friends in the neighborhood. Just yesterday, I had a mother refuse to let her son play with my child anymore because of my son's need to touch his friends (hugging, getting in their face etc.) She followed the traditional parenting way of discipline (which we all know doesn't work with kids & SPD). She even complained that he wouldn't look at her when she was talking to him. (Duh!) I tried to educate her about the disorder, but she just doesn't care. I decided not to try anymore with her because you can't change others perceptions if they don't want to be changed.

So, if your friends and neighbors don't understand and won't work with you, then you should find new friends. My son has plenty of friends parents that understand his condition and are very helpful. I've had to spend countless hours educating others, but it has paid off.

Be diligent, persistent and a strong advocate for your child.

So, all I can say is that there are good and bad days with SPD. Plus, one moment you'll think your child is doing great and then you have some problems again. It's a tough go, but if you keep at it, you'll see the benefits of your hard work. Keep at it.

Once you start school, you'll soon see that other kids have a variety of problems as well and no family is immune to it.

Jan 16, 2008
Response to Jessi
by: Cathy

I appreciate your input. I have contacted a different place for therapy and they felt that they would have openings soon. They are able to cotreat. My goal is to take advantage of that. I have seen improvements since November 2007 and with her IEP being approved at school hopefully we will see her self esteem increase which will help. She is learning day by day how to get through her sensory issues. I see her using what she has been taught. I can see the progress and hopefully see more as time goes by.

You are lucky that you were able to get your child help at an early age. If I only seen the signs earlier. But I can't look back..for Hannah I can only look forward to help her. Thanks again!

Jan 16, 2008
by: Jessi

I don't know how long ago you wrote this or what Michelle wrote back, but my two cents is to get your daughter OT that focuses on her sensory issues and to go much more often.

My son goes to OT for SPD twice a week. My son also has a mixed receptive/expressive language disorder and he goes to speech therapy twice a week as well. In fact, they are doing co-treats right now, which means he gets OT and speech therapy at the same time.

He's younger than your daughter, he'll be 4 in April, but I've seen AMAZING progress. I asked his therapists recently if it would be better to have OT and speech separately once a week or to have the co-treats twice a week, and her response was that going a week between treatments was too much. So I think frequency matters.

Other than that, it sounds like you're doing everything possible. Hang in there, you're a great mom and everything you do for your daughter now will pay off in the future.

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