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We PCS’d this past summer. I’m still unpacking. Mainly the master bedroom. Pretty much everything else is done and put away, or at least shuffled into an inconspicuous spot. This past week I was motivated to unpack a couple of boxes – I’ve been wearing the same 5 or 6 outfits since June, and I need a change, dang it! What I found put the unpacking firmly on the back burner.
I came across a box of paperwork on the boys. Three years’ worth of medical records, including their time in foster care. I picked up one of the three-inch high packets and started to read from different notes Ted’s developmental pediatrician made regarding our emails and visits:
He is very intent upon keeping his foods separate…we are very careful to not have his foods mix in order to avoid incident.
Bath time was very stressful back then: …any bubble or debris in the bath water at all and he becomes unglued – literally besides himself with fear.
Saturday evening he awoke 5 times: 8:30 pm. 10:30 pm, 1:00 am, 3:00 am and 4:50 am. Up for the day at 6:30 am. Oh, God. The memories of this phase come flooding back. I thought I was tired now? Because Gracie wakes once per night still? Haha…I have no words to explain the brain numbing exhaustion that coupled this time frame. Sweet Jesus. How could I forget this time? Or, more likely, how would I remember it? I think I have blacked out the trauma – I’m not even kidding.
And the last paragraph I read before I just had to step away: Sunday we had two pretty substantial meltdowns, one of which I videotaped and will burn to CDs…this second tantrum was a little different from the others. 30-35 minutes long, but was he was much more mobile in his tantruming. Usually he just sits in the same spot and kicks, screams, tries to bite, etc. This time he was standing by a wall corner and arching to the point where I thought he would fall ad hit his head. I had to physically move him and lay him on the ground.
Those were dark, dark days. His self-injurious behavior that I so glibly described as “usual” included biting, banging his head on everything from the floor, wall and plate glass windows. From a prone position, he would bring his legs up to a 90 degree angle and slam them down on the ground – or hard object – with all of his might. How he was able to avoid a broken heel or torn tendon is a miracle. At the time, life was frankly, unbearable. We were merely existing, praying, hoping that we would someday see a light at the end of the tunnel.
When you’re in this type of survival situation, it’s hard to see change. It’s hard to note improvement. It’s nearly impossible to accept that the level of exhaustion and anguish that the whole family is living at that moment is still better than what it was a year ago from that point. That the fact that he only left two mouth imprints on his arms during this tantrum is better than the four he left last tantrum. Because at the end of the day, he’s still doing it. He’s still hurting himself. He’s still screaming for hours on end. No one in the house is sleeping. You can’t remember how you drove to therapy because all you know is you looked up and you had pulled into the parking lot. You are so dependent on auto-pilot you can’t remember how to get home, so you just drive…and pray you get there.
When you’re in that mode, you think your life is over. That “that” is all there is for you and your family. And, for some of our families, unfortunately, the reality is that it doesn’t get any better. It may change. It may look different. But for them, their reality is still survival. And existing.
But, if your family is one of the lucky ones, it can get better. It’s taken my family more than five years to get to a point where I can put the boys down to sleep and believe that they will sleep through the night. Don’t get me wrong, there are bad days when I put them down to bed I revert back to the eggshell mode – trying to breathe silently, afraid to shift a muscle on the couch for fear the sound will wake them, waiting for two hours to flush the toilet so that doesn’t cause a meltdown. But thankfully those nights are less and less likely. They may still wake at 4:45 on occasion, but they will sleep, but thanks to the perfect melatonin blend, I can usually count on 8 hours of sleep for them.
I can now look forward to the bus bringing them home, because I truly have missed them.
After more than 5-1/2 years of intensive ABA therapy, pharmaceutical intervention, and hard work, we are beginning to see some very big payoffs.
Friday, my son is being honored at school as a superstar student of the month. Instead of inpatient hospitalization being a “sure thing,” we are beginning to hope that we might not get to that point. We are starting to believe that although he’ll live with us forever, he may be able to have a very basic job. Not a glamorous life, not the life we would have dreamed of for our child, but, to date, the best we could ever hope for him.
Ted, my son, you have come a long way. Our journey is rocky, perilous at times, and without a final destination in mind. But there is hope now where there once was none. There is room to grow, room for improvement, but, finally, there is hope that growth and improvement are possible.
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A site to discuss and learn about TRICARE Philippines Policies and Issues that are often times implemented in secret by the Defense Health Agency (DHA). Policies that result in payments at about 7.7% and 3.8% of what they should be or $328 per under 65 person instead of the expected $4,261 & $328 per over 65 person instead of the expected $8,650.
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Angela Moorad, MS, CCC-SLP. Over 30 years experience in AAC. OMazing Kids AAC and app consulting. Creator of 5 AAC Feature Matching resources (https://bit.ly/5aacFeatureMatchingResources). Includes info about unique features to support Gestalt Language Processors
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