Tuesday, April 22, 2008


This morning was already filled with tears and this morning they were not shed for Zoey but rather Joe. I have hesitated posting on Joe for a few reasons but today I feel drawn to share a little bit about this charming 4 1/2 year old who is struggling to find his way. Joe is what I have come to terms lately saying, my other Special Needs child. I have hesitated to label him that for unknown reasons. I suppose mostly because I far more think of Zoey as Special Needs then Joe. I hesitate with the term Special Needs not because I fear it but rather I highly respect it. Special Needs children run the spectrum, a broad one. I of course find myself on what appears to be both ends of that spectrum. I would never want to offend other parents with a Special Needs child with what, on outward appearances, appears to be a pretty typically developing child of my own. But the reality of his needs can no longer be referred to as anything other then Special Needs. Joe was born with a disorder called speech apraxia. In a nutshell he spoke not a word until he was 2 1/2 and only made sounds too difficult for the rest of us to even replicate but no words or syllables at all. No real sounds that could be understood, just indistinguishable noises. His receptive language,what he understood, and his expressive language, what he spoke, were on complete opposite ends of the spectrum also. The inability to speak manifested itself in many ways but anger and volatility were dominate. He also, since infancy, has been a horrible sleeper and it has only been in recent months that, with the use of a natural sleep aid called melatonin, that he is , for lack of better words, able to "turn" his brain off. Although he still wakes in the night and is a very restless sleeper. His speech has primarily caught up and he has minimal lapse in articulation. He is behind in recognition of letters and numbers and most likely when it comes time to read he will need extra attention. He also cannot write but only a few of his letters can barely write his name. So we are looking at some learning disabilities he will face has we move along. Just by products of the apraxia. However, other effects left behind because of the apraxia are very apparent. Because we know Joe had a wiring problem we knew about, the apraxia, it makes sense that if there is a "glitch" in the brain there could be more issues to contend with. In Joe's case, severe ADHD. More specifically,Oppositional Defiance Disorder. The exact symptoms too complex to explain here but suffice it to say, difficult to find the proper tools and medication to treat it with . Succumbing to medication was very difficult for me. I felt like a failure once again. The meds. can help in some areas but make other areas worse. Like obsessive compulsive tendencies. The balance is so delicate and it will probably be years before we find the right combination of things to help him on his way. Even at that it will require regular "tweeking" to compensate for the ever changing brain. Especially in a growing child and adolescent. I recently read a article about a freshman in college at Berkley who wrote a book called ADHD and Me. I am inclined to read it as it may give me some insight on what goes on in Joe's little head at times, from a first hand perspective. It may help me to help him, as I often feel completely helpless. Once again.It is absolutely heartbreaking to watch this child vacillate between carefree child to a child unable to control his temper and emotions. He acts out physically and is extremely impulsive. Unable to decipher between right and wrong and mostly, safe choices versus unsafe choices. It is a scary proposition to even let him out to play as his impulsively is a real danger to his well being. The medication is heart breaking to watch take effect. Heart breaking because it becomes apparent how much he needs it but when you see something actually taking effect on your child's brain the stark reality of things slaps you square across the face. I yearn for Joe to not have to struggle everyday , every step of the way. We are keeping him back from kindergarten in hopes we can give him the gift of another year to get all his things in check so when he does get into the public school system it can be as positive as possible. He is an extremely bright child. Most of these kids are. He is funny and friendly and engaging with everyone. He just plain and simple cannot control his little brain. Heartbreaking. On some days I am much more well equipped to handle Zoey's needs then Joe's. Some days I feel far more incompetent facing the challenges of Joe versus Zoey. Crazy I know but true. I sent my little guy off to school today heartbroken to once again not be able to help one of my children. My heart aches for these children's struggles and I pray daily for the wisdom and strength to continue to do for them all I can to ease their way. As far as Zoey goes... She is still a very unhappy little one. She does not sleep during the day and at night she is up every hour or so. She is completely wiped out. Her cardiology appointment went alright. The cardiomyopathy,thickened septum, we have been keeping our eye on, has increased in size a bit so that will require a sedated echocardiogram next Tuesday. As well as she will be having another EEG next Friday to see if we can begin the weaning process of the ACTH. Should be a fun week. Continue to pray for me as today I feel a little like a mom on the edge.


Dawson said...

We are here for you. Praying for you. Please let us know if there is anything else we can do. God bless you and your precious family

Mary said...

I'm not sure how I came across your blog. My daughter, Leah, was born with down syndrome last January. My son, age 3, was thought to have articulation problems but is now in the process of being diagnosed with appraxia of speech. My heart breaks for him, truly. I can feel the pain you're going through and have you and your family in my thoughts.