Frustrated, heart broken, tired, but still we stumble on

by Lynn Peterson
(Arkansas)

We have a beautiful 10 year old son who was diagnosed with SPD when he was, of goodness I cannot remember how young he was, but he was VERY young. He had a difficult birth and then had seizures from head trauma as a result. The hospital put us in touch with an OT right away to track his development from birth through 3 then he started Head Start with a sensory OT. He is VERY intelligent and does well in school but the sensory issues are definitely a road block for him.

He is so stubborn that there are days I have to take a long walk in the woods to cope and he is the most manipulative child on the planet. My husband and I often say that the world is his orchestra and sometimes I have to shake myself and remember that I am the parent as he conducts our home to his liking.

There are days, like this morning, that I am not sure I can do this. I feel like every attempt at discipline is a blunder. Every attempt at any activity with other kids a total disaster. Even when I think we have made huge strides there always seems to be enormous back slides. 5 steps forward 4 steps back.

Mostly my heart breaks as I see him struggle socially with other children his age. It breaks when I stumble and fumble along with this. It breaks my heart to see him fawn over the cute little girl in his class that he has had a crush on since kindergarten only to be totally rejected, ignored, and treated like he is...well in her words "SO annoying".

We for many years just put up a weak front that our child had SPD almost in total denial and tried to force him and ourselves into the mold of normalcy. This year the gaps socially were just too large to ignore and his annoying behavior to the other chilren so much more out of place. We have succumb to this and with that I think we will become more proactive and hopefully not so effected/hurt by what people around us say about us and our son.

I think of all that parents of SPD children deal with this is the most difficult. We have been all but ostracized from our small southern school. I hear that he is the way he is because he is an only child. (Both of us almost died in labor and as a result I could not have any other children, so this hurts in more ways then just the obvious.) I have heard that we must be terrible parents, we are too rough, too soft, spoil him too much, perhaps we abuse him, neglect him, It really is numbing, hurtful and frustrating. The guilt we have experienced is pretty intense but in the end it is all about our son and we try the best we can and we stumble more then we stand in trying to understand and help him understand his behaviors. He is the only one in his school so while his OT is WONDERFUL we all seem to fumble along. We never know where the line is between him manipulating his OT and what are actually problems. All I know is that he has her wrapped around his finger buying him toys and books and at times I think this impedes his progress but we move on. It is VERY hard to read him. Hard to know what he chooses NOT to understand and what he is having a hard time understanding legitimately.

This summer after a very painful 4th grade where we had a teacher who did not or would not understand or learn about SPD and a year where our son really started to wain socially with his peers, I made up my mind that we were going to over come this as a family and overcome the social boundaries of this.

After a VERY painful first day of basketball camp today I am not sure how this will turn out. After two years of basketball in school and many such camps I think we may be beating a dead horse BUT as I was talking to the coach and telling him that perhaps we just need to give up on basketball there was a break through. My son boldly came up to us and said in a loud yet tearful voice. "I want to try and keep going and finish camp Mom. I don't want to quit."
Even though he could do none of the activities the other kids were doing, he was ridiculed by other children, "You are SO annoying, go away, get away from us......." Ignored by the other coaches while they helped the "talented children" and he sat on the bench most of the time during the game portion of the day.
Crying my eyes out as I type this, the courage of these kids can not be overlooked. SO I again will load him up early tomorrow and continue on this painful journey.

I am blessed to have a SPD child. I am frustrated, heart broken, tired, and fearful for us all BUT he has taught me that LOVE is worth the pain and I do not think I would appreciate the little things like making his first basket as much with a child who did not struggle so very very hard to achieve that little thing.
We signed up for Karate on Mondays and Thursdays as well, this coach however seems to "get it" and I think my little guy will really enjoy this part of our summer transformation.

The thing I learned today is that these kids get it. They know they are different and they know there are things they can not control and perhaps we as parents try and protect them too much. In my complete agonizing pain of seeing him ridiculed and struggling in tears with frustration on that court with 100 other children who made it all look so very easy I was ready to quit to protect him from that. He told me I was wrong, it was worth it to him to accomplish this so I am going to throw at him all he wants to do and the little successes to others will be great joys of celebration to us! When you think about it that is a great journey and a beautiful example of the joys of parenting.

He really helped me see this in a different light today AND it only took 10 years!!!!! An exciting series of challenges instead of a long frustrating series of defeats. My courageous precious angel will learn to make this his greatest strength in the end I believe. I know he is stronger then I.