May 20, 2008

Living with SPD

In our house we are constantly waiting for a melt down. We do our best to avoid it but sometimes things happen that just can't be changed. I am talking about Kristofer. Right now we are waiting to find out if he will be accepted for the first level of testing for autism at Southern IL. University. The school did run a GARS-2 test and it came up inconclusive. A bit aggravating but a step in the right direction to push forward. Now we are very aware that Kris has Sensory Processing issues and that may be all that he is dealing with. It is true that many autistic children deal with Sensory issues but it is not true that all kids with Sensory issues are autistic.
So to make sure what Kris is dealing with is strictly sensory we are moving forward. It may be weeks before we know anything about the next step for evals. But at least we have started the process. We are a bit aggravated with the doctor we had in Florida. Although the care was good and we never had a problem getting an emergency appointment when the kids were sick we feel Kristofer's case was not handled well. We found out just 2 weeks before we moved to IL that the doctor had "just" read all the reports that had been sent to her about him from the OT, Behavioral therapist and speech therapist. They had recommended him being eval'ed further with a specialist. Something we found out right before we moved. At that point it was too late to start something. We being new to the area it has taken us a bit of time to figure out what to do and where to go but God has shown us.
That being said, let me tell you what we have dealt with the last 2 days. It is never the same thing that sets him off. Due to my knee Sunday morning I was unable to attend service. Which I hate but had no choice but rest it. I was in more pain than I care to be in all due to the cartilage. I can't wait to get it fixed! Anyway, Sunday night we had two boys getting baptized so I made sure to go with the kids. When the kids are going to be in the main service I try to make sure to bring paper and crayons to keep them busy. It always helps Kris, Eli and Sara. That night Kris was very agitated by what I don't know. But another little girl at the church wanted to sit with us. Usually Kristofer likes her to be with them. They are in the same class at school so they know each other. Well this little girl was invading his personal space, touching him, touching his paper, sitting very close, Kris kept moving away I kept telling her to move away from him and finally he had had enough of her. He screamed at her during worship time. What didn't help and probably sent him over the edge was the electric guitar at that moment got louder. He was screaming, and crying it hurts my ears, it hurts my skin, it hurts my body. Eli was sleeping on my lap so I had to quickly lay him down and got Kristofer into my arms. Very difficult to do with my knee locked.
I ended up holding him very tight with one ear against my chest, my hand on his other ear and just rocked him. He just cried, softly and pressed deeply into me. It helped him calm down and he was able to return to drawing once the worship service was over. I could have left the room with him but he has to learn to work through these situations. We do not baby him or protect him from things like this. It is our belief that he needs to work through these touch situations and if that means staying in the midst while we help him self regulate through it then that is what we do. Thankfully once I held him super tight he was no longer a distraction for the others, had he still continued to scream loudly I would have removed him from the room. He has a really hard time with worship and we only have the acoustic guitar and the electric guitar no drums, piano or other instruments beside my tambourine. Now let him beat the tar out of the drums he does fine...other times not so good.
Then yesterday he was under responsive. We could not get him to wake up for school, he was super slow moving and just in his own world. Took a bit of doing but a little tickling and deep pressure and he was up and moving. At night he has some how got in his head he gets to watch 2 movies before bed time. Which is not the case. But for 3 weeks we have dealt with outbursts of crying and screaming at bed time. He is only allowed one movie before bedtime. Last night it took him forever to calm down enough to get in bed. Then Sean got mister Tido (our rabbit) and did bunny stories for the kids. Eli was bothering Kris, talking loudly and touching him and Kris lost it and hit Eli in the nose to get him to stop. Which just made things worse cause then Eli was crying and Kris was in trouble and unfortunately Sean is still learning how to handle situations like this with Kristofer.
I ended up having to go in and hold him tight, get him to breath deeply and help him calm himself down. He was sobbing so much he could barely breath which was sending him into panic mode. Which is not good at bed time or any time for that matter. WE did the PBJ Jam. PBJ jam is when we pretend to make Kris into a PBJ sandwich. I smear on peanut butter pressing deeply, glop on jelly like karate chops, and then place the bread (blanket) on him and squish (the jam) out of him. He loves it. we always finish with me acting like I am eating him. It helps him calm down. Gives him the deep pressure his body needs to calm down and given a minute or two and he is so relaxed he falls asleep. Or at least that is usually what happens. Last night it calmed him down but he ended up trading places with Jaron so he could have personal space in bed (normally sleeps with Eli on the full bed on the bottom of the bunk bed). We placed all his bears around him snugly and I had to tuck him in tight. A few minutes later and he was out. I was exhausted and the house was finally quiet!
Bed time is and has always been a struggle with Kris. He can go like a tornado in a corn field all day right up to the minute its bed time and sometimes he falls o sleep so fast you wonder what happened to the energy and other times he is still like the tornado in the corn field for hours past his bed time. When he was toddler it was worse. Oh my gosh when he was a baby ..... no give and take had to be in his bed tightly wrapped no clothes just diaper and everything quiet. Once he was asleep we could add the noise but he had to be in his bed, on schedule or watch out we would have the Tasmanian devil on our hands! He still likes to be in his own bed or with his own blanket and bears. IF we stay in a hotel the tornado takes hours to fall asleep. Change is not something he adjusts to well. He does better now that he is older but when he was little, he just didn't like things to change.
SPD...doesn't just effect the child but the family! We do our best to help him and the other kids are still learning just like us on how to deal with his quirkiness. He is still such a blessing to our home! Do I wish he didn't have to deal with this stuff...YES! But God made him this way and there is a reason. We believe he is going to be used to glorify God though his life! For more info on SPD check out the like on your right for Sensory Processing Foundation.

1 comment:

DaNella Auten said...

Wow... I am tired just reading that... I have 4, two, the oldest (12) and the youngest (6) are ADHD. But what we go through seams like nothing compared to your bed time. You are in my prayers.