Every week I receive emails asking for help with a particular issue. Some ask for links, some ask for hope, and some ask for help.
I am going to start a reoccurring post in which I feature one of the emails (always with permission of the author). I ask that all of you who may have an idea, thought, link, positive story, etc leave a comment for the featured parent.
I will only allow positive feedback. Many of you know that I do not shy away from controversial topics and comments. But, when it comes to helping a family that is in need of direction, harsh wording will not help and will not be allowed.
Today, please help Michelle. Her emails to me (with her permission) are in bold. Although this post will be long, I chose not to edit them in fear of omitting an important piece of info.
"Stacy, I am emailing you asking for some guidance. I didn't want to hijack your comments section on an unrelated post. I am trying to find information on Vestibular Sensory Disorder written in lay-person's terms. Until I can absorb some information in regular-speak, I am often unable to comprehend and fathom what in the world the doctors and researchers are talking about. I need, at least, a point of reference, to jump off from.
We are unsure, at this time, if this is an issue, along with something else, that afflicts our preemie. But something is going on, more than just the normal, spoiled 3.
Some days I feel like throwing in the towel. Like today at the surgery center, when none of the other adults in his life were able to go with me. I was just waiting for the staff to call DFACS. I know all the other parents were judging my inability to control my child. He was freaking out about the environment, the hospital bracelet, the BP cuff, which is like flashbacks to NICU, the gown, etc.
Oh, God. The more I write it down, it doesn't really sound like Vestibular the way I understand. I thought Vestibular was affected by your ears and eyes. Oh hell. We may have bigger issues that I realized.
Maybe you or Helen have some resources readily available for one, now, panicking Mom, before I call the Neuro I can't stand and the Ped who abandoned us?"
This is another email from Michelle, giving a little background on her son.
Perhaps I should give you some background on my son, since, though I have been reading you for about 18 mos, I have only commented a handful of times.
My son was ripped from my body at 25 weeks weighing 26 oz. Spent 6 weeks on various ventilators from the high-speed oscillator to the nasal cannula. Had PDA ligation at 11 days old, blah, blah, blah.
My mother (and now, my sister) are both NICU nurses. Despite growing up with a mother who brought home stories, and often having visited her NICU as a young adult, (Prior to HIPPA. Also, these babies often had no one who cared what happened to them. No home to be discharged to, no family to hold vigil at their bedside.) I was still one of those seriously mislead individuals who believed that "whew! we dodged a brain bleed. No disabilities for us! He came home with just the standard preemie diagnosis and specialists.
The cardiologist, gastroenterologist and audiologist all released us from their care at 17 mos. We inherited an awful neurologist around the same time. We originally went to him for "seizure-like activity" that originated at his 1st birthday party. My mother, a healthcare professional for 35 years witnessed it and says they were definitely seizures. However, they were unable to reenact them under controlled conditions, and after a couple months, he ceased to have them at home. They discovered a hydrocephalus during an MRI for the seizures. Around this time (2 yrs old) he was also diagnosed with extremely mild CP.
So, all those bullets we thought dodged, were just waiting for us to become comfortable with our son's outcome.
He has been receiving OT and PT, and some ST, through the Early Intervention Program here, called Babies Can't Wait. Unfortunately, the suits are messing up the funding and that program is not going to be able to stay afloat much longer. When he turned 3, he was evicted from that program and accepted into the county school early intervention program. That is where he is now.
His gestational age is 38.5 mos, adjusted age is 35 mos. His cognitive and language skills are well above his "normal" peers. Sometimes, his speech even surpasses his sister, who just turned 5. His fine and gross motor skills are his area of challenge. He was 22 mos old before he started walking. (he was over a year old before he could lift his head up off the floor) He has just now started jumping, getting both feet off the floor and we are working on pedaling a trike. He can spear with a fork, but a spoon is a challenge, also a regular cup. He cannot dress or undress, or unscrew a cap.
Then we have his sensitivity or lack thereof. He has always liked touching skin, usually my stomach or chest, but his will do, or really any skin. I just always thought that was a hold-over of Kangaroo Care in NICU. He has a huge tolerance for pain. He was covered in fire ants a couple weeks ago and did not cry once. He just said " help me please Mommy". Yet he cannot stand to have his shirt off, or his shoes on inside. In the car, the shoes HAVE to be on!
I was a preschool teacher in a previous life and have a college degree, but I honestly cannot distinguish what is normal stubborn 3 yr old behavior and what is a possible "syndrome"
Ok everyone, now it's your chance to help. Please leave a note to Michelle in the comments section.