Any sensory toe walkers out there?

iVillage Member
Registered: 04-06-2005
Any sensory toe walkers out there?
3
Tue, 11-24-2009 - 1:49pm

DS has toe walked since 20 months. We have had him eval'ed and some say it is sensory, while others say it's idiopathic. I guess I would be willing to accept an idiopathic answer if he did not have other sensory issues. We have been told he does not have ASD; mainly b/c he is social and smiles. So I am wondering if anyone has a sensory kiddo who toe walks, as I have not found another one out there. :)

Also, mealtime! DS does not sit for meals. If he does eat, he rushes through and then paces around the kitchen on his toes, getting into things. We have tried to get him to sit, but it is almost impossible. Anyone else have this issue?

iVillage Member
Registered: 09-12-2008
Sat, 11-28-2009 - 7:14am

Wow! Did you spend some time at my house with my son? Gabe doesn't toe walk as much as your son but dinner at the table is horrible. When Gabe eats he stims. We have tried many different things to keep him at the table. I can't say any of it works very well. I often let Gabe just stim when he eats because he would never eat...and I would be sitting him down constantly.

Gabe is autistic...and he smiles and is social. But he is social in a different way then most kids. He is only really social when the kids are doing something of his interest. Like video games, cars, or "fighting" chasing games. If they are playing with puzzles, coloring, playing pretend, he isn't interested and goes off on his own. He wants to be social but doesn't know how to approach children to play.

Who decided your son isn't on the spectrum? I get tired of doctors and therapists telling people their children can't be on the spectrum because they smile. Gabe smiles all the time. He loves to be hugged, kissed, snuggled...but just on his terms.

Does your son go to special ed preschool?



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iVillage Member
Registered: 04-06-2005
Sat, 11-28-2009 - 12:46pm

Hi,

You probably do not remember me, but we have spoken on and off since about a year or so ago. Yes, I remember you saying our sons had a lot in common. :)

When DS was 2 he was lining up cars, was very aggressive over them, would not stop playing with light switches and doors and really did not play with toys. This among other things (dressing issues, transitions, sitting at meal time, etc.) plus his toe walking concerned us. We spent 6 months waiting for the IU evals and they saw nothing wrong. They felt he was an idiopathic toe walker...but with all the other things happening, we were not so sure. They had us fill out a sensory questionnaire and he qualified for services. The dx was "delay" but they saw no ASD and I am not sure they saw the SPD but wanted to look into it further from our questionnaire.

Fast forward to now, they just dropped his OT and speech. While I admit that some of these behaviors have significantly decreased and we see improvement, we still struggle with meal time, transitions, toe walking and some others. Dressing has just started to be an issue again as well.

So I do not know what to think. I do not want there to be an issue, but I feel that something is different about him. Family and friends do not understand; relationships are strained. It is tough on myself and my husband too at times.

It is hard to get him to make a transition. He either resists an gets angry/irritated or like when people come to visit, he gets extremely hyper...getting in their faces, making noises (he is verbal BTW), hitting, playing too rough, so WILD! It is so hard to calm him down. People think we do not discipline him and it is so hard and hurtful that they just do not get it. Thanksgiving was so horrible for us at my mom's house not having a baby gated area because he just ran around nonstop, touching everything, only sitting down to watch tv (which I really try to limit) an he did sit for about 10 mins with a new toy. We had to wait for dinner for 3 hours, so it was really hard keeping him occupied! :S

So I do not know where to go from here. I second guess myself all the time now and think, "is it me???". Sorry this is so long. I am just tired of hearing he is a difficult child, etc. It is to the point now where I just want to stay at home, in pjs or whatever he wants to wear, order take out and watch movies for the holidays b/c it is so stressful going places. My step father was holding him to stop running around - not in a mean or hurtful way - but DS kept yelling stop, let me go, get off of me and I felt really uncomfortable that he was holding him against his will. Once dinner was over we made a quick exit and I do not plan on going back.

Please feel free to tell me if what I am saying you feel is not valid with Sensory/ASD. Another opinion from a mother means more to me than a doctor's right now!

Thank you!

iVillage Member
Registered: 09-12-2008
Sat, 11-28-2009 - 6:05pm

I wonder about the "is it me" when it comes to raising Gabe. You had him tested by the IU? Are you in Pa? I think I do remember you from the speech board.

My experience with our IU...not a good one. We had Gabe tested for autism through the school and they said he isn't on the spectrum. Yet two different Dr's dx'd him with autism spectrum disorder. Gabe is very high functioning. But he struggles with social interaction, speech/language, transitioning, etc. All those things that autistic children can struggle with. Gabe is most likely going to needs supports in Kindy. As a matter of fact, I know he will need supports just based on the fact that he wanders away from the group. Right now in his integrated pre-k we have wraparound services for him. It's a therapeutic person that helps him transition, be social with his peers, sit during circle time, etc.

I had to fight the school for over a year to get them to listen to me. I was told they didn't have a classroom appropriate for Gabe, but when they came to see him at his mainstream preschool he was struggling. They tried to blame the TSS and his teacher, but I told them...no way. I then told them if they couldn't find him a classroom and there was none available for him...then I wanted it in writing. They then HAD to find a class for him, because they can't deny him FAPE. He showed a regression in his behavior in a traditional preschool setting proving that he needed more support and because of that they had to find an appropriate classroom.

The school doesn't have to accept Gabe's medical dx of autism, but they have to acknowledge it. It doesn't matter if they dx him with autism as long as they give him the right supports that he needs.

When we redid Gabe's IEP they didn't want his TSS to start with him. I said no the TSS comes on the first day because Gabe runs away. Gabe actually ran away the first day after the TSS had left and I am the one that caught him before he darted into the street. I was soooo flipping mad.

It's a long road. Have you seen a neuropsychologist or a developmental ped? Does your son run from you? And if you are having a hard time with public settings and his behavior you can access wraparound service. You can email me privately if you want to talk about wraparound. jkeller205@comcast.net



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