I’ve really struggled with writing anything about what we’re currently going through with Bubba because it’s so personal to me. Out of all 3 boys, Bubba is my boy. After he was born, Hubs and I went through a particularly nasty patch in our marriage, three different moves, financial difficulties that resulted in Hubs working awful hours in order for us to make ends meet, and a 5 month seperation while he went to train several states away for his current job. With all of the changes and the chaos, my bond with Bubba was the one constant. He was always there with a chubby armed hug, a sweet coo, or his contagious smile that made all of the sad and mad melt away.
With me being in charge of most of his care, I’m taking his sensory disorder a little personally.
Ok. A lot personally.
We bit the bullet a few months ago when things hit rock bottom with his behavior. Not only were we at our wits end at home, but his preschool teachers were starting to notice a definite issue also. He was referred to the school system for an evaluation and we agreed. After three months of meetings, tests, questionnaires, and intervention specialists, we have about as much information as we started out with.
Ok. That’s a lie. We have more. But very little. I think the only thing that’s changed is we’re drawing lines from certain behaviors to others and noticing connections and we also have more scientifically sound definitions for some of his quirks.
It’s a start.
We met this past week to hash out an individulized education plan to meet his needs. What are his needs?
- His fine motor skills are horrible. He can’t cut, color, or hold a pencil correctly to save his life. The occupational therapist that dealt with this thinks he could pick all of it up very quickly if his frustration didn’t peak so quickly.
- He’s at the socioemotional level of a 38 month old. He’ll be 5 in March. I’d like to chalk this up to him being a male, but they told me that’s really not an excuse. Do you hear that men? It’s not an excuse.
- The rest? Sensory issues. Just to give you a few of the many: he literally stuffs his mouth with food to the point of choking, he has temperature issues, he will initiate touching someone else but doesn’t like to be touched, and he does not deal well with changes in activity.
I know deep down that it’s silly to take blame for any of this but I am a chick who needs reasons. I am a control freak. I am a fixer. I need tangible. The, “Sometimes these things just happen,” excuse doesn’t do it for me. As I’m sure you can imagine, giving an uncontrollable unknown diagnoses that doesn’t have a real fix to someone like me is driving me tear-my-own-hair-out-and-eat-it crazy.
I’m starting to really research this and I’ll be posting the different activities and techniques that we’ll be using to get him centered. So far, I’m reading a great book called The Out of Sync Child. I’ll let you know how and if it helps.
I’m sorry if this post is choppy and/or doesn’t make a whole lot of sense. I mostly did train-of-thought just to did it out there and post something. Have any of you gone through something like this? Did you come out on the other side unscathed? How are you coping?
{ 5 comments… read them below or add one }
I haven’t been through anything like this, so I’m not of much help. But, I wanted to let you know that my prayers will be with you and Bubba and the rest of your family. I can’t imagine all of the thoughts that must be going through your head. Stay strong Mama.
Sarah… my Sarah… I wish I knew what I could tell you that would help you, but I’m quite unsure. Please tell me if there’s anything that I can do to help you get through this difficult time. I can’t understand what you’re going through, but I’m always here. I don’t care what anyone says, parenting is THE toughest job out there, by far, and its one that we want to do with precision perfect perfection. I do hope that discussing it here on A.H.Q.M. helps you with finding others going through the same thing, because sometimes one of the biggest helps is just to be able to relate to someone.
I love you girl. ((big miles away hugs))
My daughter is dealing with many of the same sensory issues and emotional delay. She was so overwhelmed by the noises and chaos of a private preschool she literally froze and could not join in any activity. She has a severe anxiety disorder due in large part because she does not process the world as we do. I enrolled her in a early childhood special education program. It’s free (if they qualify based on their needs) and I’m sure every state has them. She is getting OT there and her preschool teachers (she’s in a mainstream class) are awesome! We just had our first professional insurance paid OT today. I’ve had a horrendously difficult year with her but thing are looking up. I’m feeling hopeful.
I’ve heard great things about The Out Of Sync Child also. Good luck on your journey.
Sarah we totally take it personally, we are mom’s we think “WTF can we do to fix this? We fix everything with a band-aid and a kiss” get on board right!? I wish I had words of wisdom other than you are doing the right thing…I am there with you for support so you can call me anytime and I am here for you. Oh…and I need to send you the Twilight love…I fail. Hang in there and I am here if you need an ear…or two.
I can relate to most of what you are going through. My first child has sensory issues as well as a very intense anxiety disorder. Luckily he is now 12 and things have gotten much better in the past year and a half. It’s not perfect and he still has issues but rest assured it will get better. I have read The Out Of Sync Child. While it has given me some insight the only thing that has helped us is prayer and time. Time to figure out how to deal with him and what personally works best in his situation. He is old enough also to know that he has these issues and tries very hard to make a conscious effort to get control of his problems. One of his major issues was not feeling in control. He has had counseling and all that but he is doing so well on his own now and when is feeling particularly bad he will usually let me know. The days of tantrums, screaming and crying (both of us!) are nearly behind us. I will be praying for you, don’t lose hope!