Wednesday, May 20, 2009

Diagnosis... Kind of

It is one of the hardest days of your life when someone tells you your child has problems. That your child is not "Normal". But I can honestly tell you that the harder thing is when your child is refused the treatment they need. We took Isaac and Micah to an outpatient OT clinic that specializes in Sensory Processing Disorder cases. I was so excited to get to have this direct service for my children. They saw both children individually and turns out Micah is just mimicking Isaac's behaviors, he doesn't have SPD. Talk about huge relief. Someone could actually tell me with confidence that my second child doesn't suffer the same thing as my oldest child. The tears came in the car while Micah told mommy, "don't be sad". The OT explained that while Isaac does have many symptoms of SPD he has many positive factors helping him out. His intelligence and work ethic being two of many. She felt positive that with treatment he can live a happy and succesful life. (notice I didn't say normal? I hate that word!)

Ok here is the catch. Because SPD is not a medically authorized diagnosis as of yet the treatment for it is called habilitation not rehabilitation. Most Health insurance will not pay for any of these treatments. Lucky our health insurance pays for 8 visits. This therapy is only useful if it is routine, once a week. So we can't stretch this out or be satisfied with just 2 months. His condition is not going to go away in 2 months, it's not going to go away ever. And here is the problem with Health insurance and the Government. They are more concerned with cleaning up the messes they made by not spending the money on the premptive services than on fixing the problem before it becomes huge and unwieldy. I pay lots of money for Health Insurance a year, my husbands company pays lots of money as well. This should be a non-issue, we pay, they pay. These therapy sessions cost $125 an hour. That's between 500 and 600 dollars a month. Do you have that kind of money? I sure don't. But that is what it takes to get the help my son needs. So what does a mother do? Do I take the 2 months and say thank you for trying but we can't afford to help our son be successful anymore? Do I try to find the money somewhere? Do I hope that what I am trying to do at home will be enough?

There are plenty of other mother's out there with the same dilehma as I have. And in this case one mother I know has a worse situation than I could ever imagine. I am putting her post HERE because even if my situation is much less horrifying I understand the useless feeling she descibes and honestly it needs to be stopped. We need to have options to help our children succeed and be safe. What use are we if we can't accomplish that?

Monday, May 4, 2009

Emotional Sunday

For a child with Sensory Processing Disorder social situations can be tough. This was brought home once again for me on Sunday. Isaac has been struggling with going to primary at Church. He has a hard time sitting and concentrating on what is going on. He has become attached to a little boy in the class just above him. This little boy also likes Thomas the tank engine and brings a bag full of Thomas books and coloring pages. Yesterday this boy decided that he didn't want Isaac to sit next to him because Isaac kept bothering him. I quietly stood to the side and watched the interaction. The little boy was trying to tell Isaac kindly that he wanted to sit by someone else today because he didn't want Isaac to get into his bag. Immediately the two boys sitting next to this little boy started telling Isaac that he didn't get to sit by his friend all the time and that he wasn't even in their class and shouldn't be sitting by them anyways. I watched to see how Isaac handled this and was surprised when he turned to the little boy and promised he wouldn't get into his bag if he could sit next to him. This was big for Isaac. He comprehended what that little boy was telling him and tried to problem solve the situation. The situation unfortunately wasn't solved because one of the boys sitting next to Isaac's friend started yelling at Isaac that he needed to leave them alone and go back to his class. Isaac collapsed to the floor and started to cry and say "I'm not taking this anymore" his normal frustrated dialogue. At this point the boy started pushing Isaac with his shoe to get him to go away and move. I had had enough. I tried to calmly tell the boy that pushing people with their shoes was inappropriate and that he needn't yell at Isaac so meanly. The boys father was sitting right behind him as this was all going on. So now to the point. I know that it is hard to understand my child or even to put up with his abnormal behavior. The little friend that didn't want Isaac to sit by him had every right to ask to sit by someone else. Unfortunately for Isaac he doesn't understand this. He doesn't know why kids don't want to be around or do things with him. It is enough to break a mothers heart. To watch it over and over again is painful. The hard part is being able to educate everyone he comes in contact with about what is going on. It is also frustrating when parents don't step in when other children are not patient enough with him. But again how can I expect people to understand when I don't fully understand myself what is going on?

Wednesday, April 29, 2009


From almost day one we knew our Isaac was different than other children. Not so different that we didn't attribute it to personality. Isaac has always been active to the point of exhaustion for those around him. As a baby he was easily startled, slept very badly, and cried frequently. Ben and I were sleep deprived like all other parents with infants so we thought little of the extremes we were living with. We came up with coping technics to survive the first year of Isaac's life. Swaddling was a must, TV was used often and still is, staying outside constantly. Isaac didn't sleep for more than 3 hours at a time. Finally sleeping through the night (6 hours) at 10 months after weeks of letting him scream to sleep. When Isaac became mobile our lives turned upside down. There was nothing he didn't get into. Again from what we could tell this was normal but for Isaac, you couldn't redirect him. He wouldn't stop, slow down, or take quiet time. Getting him to take naps was hard to impossible without laying on the bed and holding him till he fell asleep. As we always joked he had two switches fast and off. Isaac requires constant attention. Not just to keep him safe but he demands constant affection and participation in anything he is doing. Being Isaac's parent is so time consuming that other responsibilities are lucky if they get done. There was a while before we learned what was going on that I just shut down, not being able to do anything because I was so tired of monitoring Isaac and Micah. Isaac is a very physical child. He bashes and crashes in to objects and people. He has no concept of personal boundries. He takes excessive risks, hurts himself frequently, and repeats these behaviors often. All of which sounds like a typical boy. I think the idea that I am trying to convey is that all of these behaviors sound like normal developing for a typical child. Ben and I just thought that we couldn't control our child. That somehow we were doing something wrong because his behaviors weren't changing as we tried to correct them. The more we disciplined Isaac for doing something the more frustrated he became and the more he would do the same thing over and over again. There is a level of desperation you reach when you feel you are failing as a parent. Watching your child being excluded from social situations because he can't control himself is heart breaking because you feel the blame is on you for not teaching him better. By 4 years old Isaac was fairly isolated from other children. Trying to coordinate play groups was exhausting. I had to hover over Isaac constantly to ensure other childrens safety as well as help Isaac initiate appropriate interactions. Having Micah only complicated things because I had to split my attention and wasn't able to constantly reinforce good behaviors with Isaac. In a time when I had thrown my hands in the air ready to give up Isaac started Preschool. Because of my religious beliefs I know that the Lord directed us to this Preschool. In the first 3 weeks they knew something was wrong. They asked if they could bring someone in to observe Isaac to see how they could help him better. With a resounding YES PLEASE I waited impatiently for someone to tell me how to help my child. When Sensory Processing Disorder was suggested as well as ADHD I read the suggested books and through it all I kept nodding my head and laughing as I found support and understanding. I have found other parents dealing with the same issues and what a relief to know I HAVEN'T RUINED MY CHILD! Sensory Processing Disorder is still not a recognized diagnosis by medical authorities but legislation is in process to make it a diagnosis so we can get the services that we need. Health insurance doesn't cover treatments and schools can not give services under that diagnosis. Luckily our school district saw the problem for what it was and has worked wonderfully with us due to informed specialists. There is no cure but we are working everyday to give Isaac and now Micah the ability to function in the world and find success.