Made it through with no crisis intervention today!
“Little Big Man” will be gone to an overnight respite camp from Monday-Thursday. I didn’t share earlier because I was afraid to tempt fate. We are beyond excited that this week will give both him and us a much needed break to regroup. This week long camp is especially designed for children with severe behavior disorders, so we are praying he can be successful there. If he does it wil put him through day 32 (making it the longest time he has been at home in 2 years)!!!!!
These past few days have not been easy. “Little Big Man” has struggled to maintain basic life behaviors and been in need of crisis intervention daily. An unwavering angel has been the only one able to keep “Little Big Man” out of the hospital this past week. We will call him Mr. B and he has been amazing. He is a young man who is “Little Big Man’a” behavior therapist and he has one of the most wise souls I have ever met. He has worked beyond his responsibility to us and humbly disputed our praise and thanks. We are beyond thankful to have him in our lives. Today would not be day 27 without him.
It has been a long and winding road to get to Day 24. Today we made it all the way to the hospital and had a crisis call with his therapist in the parking lot, before he finally gave in.
He’s still at home 🏡!!!!!!!!!!
We had only one major incident where we drove to the emergency room. Got to the doors before he gave up and asked to go home. Still a major victory as he still wants to be at home!!!!!! Most of the time he is working hard through his therapies and has been trying (another major accomplishment)!!!! You can do this “Little Big Man”!
We made it to two whole weeks! Today, “Little Big Man” even went out to a restaurant. Let us yell, scream and rejoice…well at least tonight let me open that fizzy wine cooler and lay in my hammock in some beautiful 70degree weather 😉 (and I did) 😉
The last few days have been hour to hour. He is struggling through ingrained habits. We have been at the edge of hospitalization at least 5 times. We are long distance runners in the emotional race against his mind. It twists and turns up so so many mountains. The wind has picked up speed and pushes against us whispering our failures. The landscape changes instantly when you blink and your mind narrows its thoughts to A single repeating mantra… “Keep going”.
Days 7 and 8 are done!!! “Little Big Man” has an enormous team to help him stay home this time. Ten different people work with him an average of 2 hours per day, every single day. We could not be more grateful to them.
Unfortunately that means that money for summer camps for the rest of children had to be used. But we are using my creative and crazy husband to make their summer amazing. Today we used chalk and water to paint on the driveway, had a barbque, and a picnic in our tent in the living room. Tomorrow I am in charge of a full scale day spa, complete with facials, manis and pedis 🙂
“Little Big Man” is already starting to unravel daily. With at least 1-2 tantrums a day that require one of these lovely 10 people to talk him off the brink. But so far we have managed to keep him from going nuclear.
“Little Big Man” had the fragile x testing done on Tuesday and the average wait for results is 2-3 weeks. I posted before how awful and sick my thoughts are on this subject. No one should ever wish for their child to have a genetic disorder, but I do. Down on my knees praying that this is the answer to all of our whys. The guilt of wishing for this is excruciating and untenable. I pray for forgiveness and in the same breath pray harder for the unthinkable.