To provide a place for parents and family members to meet and share experience, strength, give hope and awareness, to other families who have similar experiences raising children with ADD/ADHD, SPD, Anxiety, ASD, mental health diagnosis, developmental and behavioral challenges. Through sharing in this experience of raising these hard to raise kids, we grow stronger and more resilient.
Friday, August 24, 2012
Things have been a little crazy around here lately and there are changes a comin' to add to the craziness! Emma has been off kilter the last couple months. Her anxiety has been up and she is not sleeping well, we have a 9pm summer bedtime & she is staying up until the 1130-1230 range. Em is averaging about 7 hours of sleep a night with the occasional "catch up" night that she sleeps in. I am sure part of her issue is that she is not getting enough sleep.
Of course not all days are bad, we have days or parts of the day that things run pretty smoothly. The major problem is that she is set off SO easily which, going from playful & happy to screaming, raging and attacking. After meeting with her pediatrician we looked at her medication. It has made very little difference so her primary care suggested weaning her off the medication over the next month. She will be medication free for the first time in years.
** Just a little history- our PC is amazing and knows & understands all of Emma's little quirks. She has been there from the beginning and I 110% trust her and her recommendations.**
When Emma was put on this new medication by her Med Manager a few months ago, her other medications were stopped. This included her sleeping medication with the goal being that this med would help all of the struggles in one little pill. Unfortunately that did not happen.
The next suggestion by our PC was changing from the Children's Center to Primary Children's. While Em's therapist at the Children's Center is absolutely amazing, I have not been thrilled with med management and developmental assessment end of things. There has not been great communication, differences in diagnosis & it feels like Emma has been falling through the cracks. We kept going because I didn't want to bounce her around and I really wasn't sure what direction to go if we left. Now that we have been referred to PCMC I really do feel like this is the right choice for Emma. I need her somewhere that everyone will be on the same page & will communicate not only with me, but Emma's pediatrician. That all being said, I am still very appreciative for the positives the Children's Center has had on Emma. Their preschool program made a huge difference & like I said we really do love the therapist. Our first appointment at PCMC is in the middle of September, we are keeping Emma off medication until that appointment so the doctor can see what her baseline is and can make decisions from there.
So those are our medication struggles. We are taking things day by day, hoping things get better and really not knowing what the next few months are going to look like. Anyone who has been here? Ideas welcome!!
Emma is starting school the week of Labor day, I decided not to put her in our local district special needs class. Emma was in that class from Jan-May of last year after graduating from the Children's Centers preschool. All I can say is YEASH. It was ran terribly, there was no communication with parents & virtually nothing that was remotely academic. This year Emma is going to a home run preschool with a woman I have known for many years. Miss Lizzy owned a preschool/daycare before taking some time off to go and finish her degree, she now has a degree and is starting up again. I am nervous though, it is going to be a lot more of an "uncontrolled" environment than she is used too. Realistically most kids don't get overloaded by normal noise, some toys & bright colors so that is not an accommodation a regular preschool needs to think about. But along with the scary unknowns, I do know that Miss Lizzy is so sweet, hands on and FUN! There is great communication (If you can't tell I have a MAJOR ISSUE when I am not communicated with!!) I have already received Emma's school calendar & daily schedule, and Emma got a Welcome card in the mail. Liz already knows that Emma has some special needs and seems more than happy to help make this a successful school year for my little bug.
Our Major To Do's
Get Emma settled in school
PCMC appointment with accompanied behavior log & stack of paperwork
Put together a list of realistic goals for Emma to meet this fall (I come up with goals every season)
** HERE is our summer goals.
Get Emma back on a structured schedule - Our summer schedule has been super lax & it shows big time!
Put together our visual schedules
Get my Home Management Binder back in order
So this is where we are. Things feel a little upside down. I am feeling a little overwhelmed and frustrated. I am hoping that once we get into our routines things will settle down. Fingers crossed!