Category: February 2015

HELP……a four letter word


I really don’t like asking for help. Part of me may even hate it a bit. I don’t know exactly why this is a challenge for me but I guess I can be a bit of a control freak about things ( I can imagine my husband laughing at these words when he reads this). Those who have worked with me in the business setting know this all to well and my family and friends have been exposed to my inability to just let other people help, do the work, give me a break, etc. It is certainly not that I think I can do it all….because I humbly admit that I cannot. It is not because I don’t trust other people to handle things or that I believe I am best suited for every project or parenting moment because many times I doubt my own ability at a given task. Lately, I have been doing some research on this issue to try and understand why it is so hard for me to just ask for HELP. This is certainly ironic considering how long it has taken us to get Charlie to ask for help in a variety of scenarios. He simply was unable or unwilling to admit his frustration and ask us to help him. We worked on this for a very long time and were first successful in getting Charlie to use the sign for help with him eventually saying the actual word (although we often still have to prompt him to say “HELP mom”). I guess the apple doesn’t fall far from the tree after all….. (more…)

A different kind of snow day….

Today we had a snow day – but not the typical version that most people have. There were no snow angels, no sledding, no hot chocolate. We did not even make it outside and while this fact used to drive me crazy, I have come to accept that just because it is called a snow day doesn’t mean we are going to actually be in the snow. With our little guy, the battle of snow suits and boots and hats and gloves and the cold just don’t really seem worth the upset and while there was a time when we would have pushed and pushed to make those picture perfect memories take place, it seems we have started to realize that there is no one version of how things should be and many times it’s finding the things that Charlie thinks are fun that turn into our best moments. (more…)

I just hate it….today

bad day

I make an effort when writing to be honest and truthful as much as possible while at the same time aiming to have a positive outlook in regards to the daily struggles of being a parent of a child with special needs (or even just being a parent in general). Most of the time this is not a challenge for me as I truly believe that we are very lucky but sometimes I have a bad day (or a bad week) and I struggle with being able to let that be – to just be mad or sad or frustrated and know that it’s okay. One bad day, one bad week is not going to determine the rest of my life and just as we acknowledge how hard some things can be for Charlie to deal with or experience, there are situations that are as equally challenging for us as his parents. (more…)

The follow-up appointment…..

In my January 28th post, I wrote about how we had our evaluation with Charlie at CHOP and that my husband and I were scheduled for our follow-up meeting with the developmental pediatrician and other team members this past Wednesday. In all honesty, I was not really that stressed about the appointment because we have been through so many evaluations either with the early intervention team, the school child study team or with our previous developmental pediatrician. In a way I felt we knew what to expect and were prepared for whatever the CHOP team may tell us. I was not nervous about the meeting and was fairly calm walking into the appointment. A good friend who has been through this experience with her own son and who had met with a team at the same facility called me the day before and was extremely helpful in providing both support and advice regarding our follow-up session. The last thing she told me was to “expect the worst.” This was meant not to scare or upset me but rather to help me. Prepare for the worst so that you are not caught off guard or upset by whatever the doctor may say. This was great advice but I was not convinced this applied to me simply because this team had seen everything that other evaluators had and I felt strongly that they would tell my husband and me that they were unsure about Charlie; he would continue to perplex them as he had so many before and that we would need to continue living in this ” we don’t really know” existence for a while longer while they figured him out.

It turns out that I was wrong. So much for mother’s intuition or perhaps we can call it optimism in this case. The doctor came into our meeting, explained she had multiple reports to review with us and out of the gate advised my husband and me that based on their full evaluation and the three different tests that were conducted on Charlie, they are providing a diagnosis of Autism. I felt my pulse quicken and my heart pounding and immediately looked over to my husband to gauge his reaction (he is far less emotional than I am and more difficult to read but I could tell he was shaken as well). The next hour and half consisted of a review of the various reports provided by the doctor, psychologist, speech therapist and occupational therapist. Both the speech and occupational therapist came into the meeting to review their reports and recommendations which was helpful and appreciated. During this meeting, I was definitely listening and paying attention and taking it all in but I was also distracted and my mind was reeling. Autism – it was official….finally. (more…)

Ah, how I missed you

I feel like it has been forever since I have posted and in a way for me it has! I have not gone this long without a post that it seems almost weird writing again. I have so much to share and so much in my head that I need to actually refresh myself on my own posts so that I know where I last left off.

The reason for the long silence on my part is two fold. First, I was in such a state of waiting to have our follow-up appointment at CHOP that I was in a sense distracting myself with many other things that had little or nothing to do with this blog or Charlie’s issues. I guess in a way, I was purposely focusing on other areas of my life in an effort to pass the time and avoid thinking about the meeting with the CHOP team. Second, on my way to that CHOP appointment on Wednesday I started feeling sick and by Wednesday night I was in full blown virus/flu type mode. The last few days have been a complete blur consisting of me mostly being asleep in my bed, chugging fluids, making my husband pick up the slack at home and being extremely thankful that my in-laws were kind enough to take the baby for a few days so that I could rest and recover and also in an effort to avoid getting him sick since he is so young and has not been vaccinated. I am starting to turn the corner today (saturday) and while I realize I am definitely not 100% I am coherent, not asleep and actually feeling semi-normal. I spent most of the day cleaning, washing and disinfecting my entire house and feel like life has returned to normal somewhat (whatever that means)!

So for those who have reached out via this blog, personal emails or text wondering where I disappeared to, why I have not provided a post or update I do apologize but I was seriously down for the count. I am guessing this hiatus will certainly impact my future posts on what has happened in the last week because I have had more time to think about things which is good for me as I can sometimes jump the gun or become overly focused in certain areas of my life. Maybe me getting sick was a sign that I just needed to take some time for me (even if that meant being asleep for most of it).

Stay tuned, more to come. And thanks for the follow-up and caring from those of you who did reach out, I truly appreciate it.