It is 2pm and I am actually counting the hours until I can go to bed tonight. We are just getting back home after an extensive and lengthy evaluation process at CHOP. It was long!! The fact that I barely slept and Charlie was up a bit in the middle of the night made waking him early, rushing him to get dressed and out the door a very stressful morning since any break in our standard routine is cause for meltdowns but we made it on time (okay a bit late) and I think it was a successful process.
I tried to be prepared with snacks, drinks, a toy on hand for Charlie but of course didn’t take myself into consideration so I have to admit that mid-way through I was fading fast, longing for coffee or a bottle of water and snacking on Charlie’s goldfish to hold me over. Even though we go in to the appointment with the full knowledge that it is at least 4 hours, for some reason it seems painfully long when you are actually there. This is not a super insightful or inspiring post just warning you but rather a high level view of what these type of evaluations entail. (more…)
I follow many blogs and websites that are written by parents of children with autism or other special needs. The articles, insights, advice and resources are highly valuable and often let me know that there is someone out there who understands our world. One of the trends that I have found on many of these blogs is the tendency to vent over other people making statements to us parents such as “things happen for a reason,” “you were meant to have this experience,” god won’t give you what you can’t handle,” “this is a blessing you will learn from,” and many more. My sense is that parents become upset and frustrated by statements such as these because it is not evident to them that this may be a blessing as they prepare for their next IEP meeting; or they feel they are not different or more skilled than anyone else at managing a child with special needs. I get it, I really do and like anyone who has lived through or is currently living through a difficult situation whether that be illness, divorce, caring for an elder parent, losing a job, etc. it is pretty tough to view any seemingly negative occurrences as a blessing or a gift to grow from. (more…)
This week we had a huge win. After going through a significant amount of paperwork and waiting, we received a call from CHOP (Childrens Hospital of Philadelphia) calling to schedule Charlie’s developmental evaluation. It is not 9 months from now….it is next week!!! I feel like I have just hit the jackpot and am so happy and relieved that after months of waiting and stressing over where and when we were going to find a new doctor to work with (since ours retired), we have a plan of action in place.
There are many wonderful doctors, facilities and hospitals in Philadelphia and the surrounding areas but it has been our goal for quite some time to get him into CHOP for a variety of reasons. This doesn’t mean that there are not many other great places we could work with for Charlie but we believe they are one of the very best and have friends who have recommended we go there. We also love the idea that we can start seeing physicians in various departments who are all working for the same system which should make our lives easier. More importantly, I feel secure in knowing that as of next week we will be back under a physicians care for our son and that is something that gives us peace of mind as we currently are without a developmental pediatrician for him. (more…)
It seems likely that all parents struggle with knowing what is and what isn’t normal or typical in regards to their own childs development. I was never really that into kids to be honest, with the exception of my niece and nephew I had not spent much time around young kids prior to having my own. I don’t have any type of background working with kids so both my husband and I were quite frankly pretty clueless (and may still be!) about when and how kids develop, what type of behavior is typical at which ages and basically what the appropriate expectations are for them.
There are many days, weekends, weeks even that it seems as if everything in our home is totally normal (aside from my desperate attempts to get the boys engaged in a dance party with me). During those times I often start questioning if perhaps I was a bit to aggressive and overly concerned and maybe Charlie is just fine with no real issues at all. Then there are days where we have no doubt that there is something off even if we don’t always know what that means. We should probably make an effort to schedule more playdates, spend more time around other kids in order to really understand what is reasonable when it comes to 3 year old boys (from what I can tell this whole notion of the terrible two’s is a total farce and three year olds are really the ones we all need to be looking out for….or hiding from). (more…)
When I began researching autism, leaning disabilities, ADHD and other challenges that my own child faces I continually came across the term sensory processing disorder over and over again. Unsure of what sensory processing disorder was, I continued my reading and learned as much as possible in order to understand what the world might look like in the eyes of my son. Our assigned occupational therapist was also extremely helpful in working through the various sensory issues that my son experiences and through many outlets I have learned quite a bit about this world.
I am not a doctor, not an occupational therapist nor do I have any formal education or expertise in the area of child development or education. I have learned about the issues my child deals with simply as a result of extensive research, reading and discussion with the appropriate experts and my comments below are based on my own personal experience and are not to be taken as any form of advice, guidance or medical expertise. I am simply sharing our own experience based on what we have learned. (more…)
During this past week I had the pleasure of spending my Saturday afternoon enjoying a wonderful baby shower in honor of a couple who I have no doubt will be fantastic parents. Of course much of the shower was spent chatting and catching up with a few friends who I always find inspiring to be around. I was really grateful to have each of these ladies tell me how much they enjoy reading my posts and how interesting and inspiring they are finding my blog. It really meant a lot and always means a lot when anyone takes the time to let me know their thoughts and also that anyone would find time in their busy schedules to sit down and actually read what I am writing is just astounding to me. The most interesting or thought provoking statement that came up time and time again (and is something that many people have said or written to me most recently) is ” I don’t know how you do it, how you find the time, how you are dealing with all of this and you and your husband are just amazing and wonderful parents.” Now, don’t get me wrong, I genuinely appreciate all of these comments and thoughts but the honest truth is, I want to say to almost every single person that says those things to me……I don’t know how you do it either! (more…)
When I talk to people who I have not seen for some time about Charlie and his progress, treatments and plans it is very common for them to ask me how we knew to even start the process of having him evaluated or more commonly how did I know something was wrong? We are not overly paranoid parents, we are actually pretty laid back about most things and in some cases I often worry that we are too relaxed when it comes to this whole parenting job. That being said, I was always very cognizant about the red flags of autism in young boys especially and kept a close eye on any articles that were sent to my inbox as a result of signing up for newsletters and websites while I was pregnant. (more…)
It is as if you are driving through thick fog, on a dark road, trying to get to where you know you are supposed to be. The problem is, you lost the directions and have no GPS to guide you–and, in the background, the radio is playing loud songs that are changing.
These days, it seems that everyone has ADD or ADHD or whatever the latest terminology is. I know many people who use ADHD as a punchline or people who truly believe that it is over diagnosed and not a real condition. I will not try to convince anyone what they should think about ADHD, it is most certainly not my place. What I can tell you is that I was diagnosed with ADD at age 20 and it is something that I have continued to struggle with more and more into adulthood. It is without a doubt very real for me personally and is much more than simply being excitable, hyper, easily distracted and unfocused. ADHD (or ADD) has many implications and is more far reaching than many people can imagine. A person with ADHD who goes undiagnosed may suffer from low self-esteem, anxiety and depression. He or she may struggle to manage daily tasks or may develop methods to overcompensate for their struggles. This is not the end of the world and in the grand scheme of life, being diagnosed with and managing this condition is not nearly as challenging as so many others may be. It is not life threatening and with the proper awareness, acknowledgement and understanding it is a condition that can be managed very well. (more…)