I have a 2.5 yr old son w/ severe Global Developmental Delay, which feels like another way of saying We're just not sure what's wrong w/ him. I was hoping there were some other Mommies on here, who have children w/ delays across the board, w/ whom I could connect with and share information. Of course, anyone who is in the field of Special Education, therapies, or anyone who may have family or friends who have a special needs child, is VERY WELCOME to join!
Jake is delayed w/ both gross and fine motor skills, his speech as well as eating (everything MUST be pureed or he'll gag), and he has a lot of sensory issues (which are actually getting a lot better). We do all of the therapies, see pretty much every specialist, and use different equipment to position him to eventually weight bear. So that's the general info on me...Looking forward to talking and sharing!!
Jake is now 3.5 and has become quite the little man since this time last year. He is starting to come alive in many ways...starting to join our world...AND enjoy it! (sometimes!)I've managed to get him a diagnosis of CP, among others. He is doing well for the most part, other than weight gain, which can and has affected everything else..especially during the cold and flu season. He's got a feeding tube now, and that has been QUITE an adjustment...in the process still...
While Jake is showing tremendous progress w/ PT, OT, (weight bearing, attempting to sit up, keeping legs stiff, actively reaching for objects and textures..etc) and some communication, his Oral skills have completely diminished. Also there's been an abnormal EEG (done at my demand for silent seizures, gagging, and excessive rubbing of his head and crying after "zoning out") Soooo that's where we are right now. No word either way yet, but I just want to be safe. Other than that, I've got him just about every specialist in DE, in some cases multiple....i.e. I've also got him a Developmental Pediatrician at Kennedy Krieger, as well as a consultation in their Speech and Feeding Dept. He's just recently seen their G.I. Dr and a Nutritionist.) I also have him in w/ a Neurologist at Johns Hopkins, both in Baltimore and both VERY well known for cutting edge "stuff". No mattter what, Jake wakes up each day ready to try again..
So....just keep fighting for your child, because you are their voice.Think of them as your own little puzzle...start brainstorming, researching, and demanding what you think they need...because YOU DO know sometimes, alot of times, even if you doubt it. Listen to the silliest instinctual feeling..it may be right. Then you can hone in on their signals, no matter how faint. I'm learning more and more about Jake each day..and loving it AND HIM :)
That's the quick update for now! See ya 'round!
My Jakers passed away on August 19th, 2011...4 days after he turned 5 years old.
Please...PLEASE use this community to gather info, new ideas, to vent, cry...use it when you are at your wits end, and use it to report your child's milestones which you've worked so hard to reach, use it to help others, and to visit w/ other kids just like yours, through “strangers” w/ one common interest..amazingly special kids. I know you know, but let me reinforce the importance of this: Always fight for what you think your children need no matter what, when, who, and how.. and especially when you are completely drained, discouraged, mad, sad, and frustrated...as hard as it is. This is mostly why I started this community..I wanted help...to help myself...to help Jake. Trust me...i can tell you now that I'm on this side of my/our worst nightmares, life w/out my special angel is so much worse than i could ever fathom. Times got scary over the last 5 years and I sometimes wondered what life would be like if he were to be taken from me...and w/in 2 seconds, the thought alone took my breath away and left me shaken to the core, and I quickly put that in the "NEVER" category of thinking, with a huff, puff, and a "yeah, over my d*** body will I allow that to happen". I believe deep down that I did my best to fight for Jake, even though throughout his life I felt like I could never do enough for him. I will ALWAYS take great pride in being the special Mommy that God chose to give His sweet sweet Jacob to. Now, although I am utterly and completely lost, haunted by heartwrenching guilt, and filled w/ grief and sadness..just to see his big blue eyes looking back at me again, I realize and appreciate more than ever, the legacy of Jacob Nathaniel Aguilera… simple, really...You're ABLE. There's ALWAYS hope. And LOVE is what truly matters..at the beginning of your first day, at the end of everyday, and on the day you are called Home. I wish you all the best of everything positive in this world..and the strength of 10 armies to get you through the day…and my praise for being who you are, for your children. Please remember my Jakey...and keep us in mind when thoughts creep in that suggest you are not BLESSED w/ the hardest job in the world...because you are...so so blessed. I know it's hard...really hard...most days..or even jst some..it's rough. But there's always hope…and here’s Mr. Jakers, even in death, showing me it still exists. xoxoxoxo