Ok, so anyway, the big appointment came and went. I really didn’t learn much more than I already knew! LOL Go figure! Is that a bad thing? No, not at all. Fortunately, I also got confirmation from three people that we need to talk to the doc about ADHD. Thank you Lord!! We have an appointment with his Ds doc on July 26th. YAY!! They will likely want to do more evaluations once we have a plan in place for the ADHD since he wouldn’t be still long enough to really do any of the testing except the hearing. He has “low pressure” in his ear drums but his hearing is totally within normal perimeters, so nothing to worry about there either.
Since our appointment, I have realized that when I try to explain to people how active Timothy is, I don’t think they are really understanding. I have figured out how to describe it though, he needs to be supervised 100% of the time. Seriously. I have the bedroom door booby trapped so that if he gets up in the night we hear him. He has to be strapped into the booster seat at the table to even stay in one place for a meal (if we go out we put him in a high chair so he can’t roam). He doesn’t sit still long enough to read a story, or watch even two minutes of TV. Even though he is potty trained, and can even clean himself (wipe & wash his hands), and dump his potty, he can’t go alone because he will get into the cabinet and make a mess, or will put things that don’t belong in the toilet (and flush!). He is on the go constantly, and 80% of the time, he is into something that he shouldn’t be, even though, he knows he will get in trouble (he will look right at us as we are telling him “No” and do it anyway). Time outs are sitting on someone’s lap being held because he won’t sit still in the time out chair. Am I complaining? Maybe a little. It’s exhausting some days because I have to watch him no matter what else I need to be doing(and yes, this includes going to the bathroom, showering, cooking a meal, or other household chore even just taking a little break). Am I sorry that he is my son? NO WAY!! Would I do it again, even knowing what I know? 100 times!!
When I look at Timothy and think of what his fate would have been, I can’t help but love him even more. Because of his “energy level” (hehe), he would no doubt have been tethered to chairs, his bed, maybe a crib once he was transferred to the institution. Something like that would have surely broken his little spirit. He would have resorted to stimming to stay aware/awake. Maybe banging his head, or rocking, or picking at himself. When I think of what “coulda” been…
The truth is, what could have been for Timothy, IS for so many… there are so many little ones who have no idea what waits for them on the other side of the car ride that they excitedly go on. They are moved from the only “home” that they know, where they are taken care of, and loved, and fed. Moved to a place that is scary, and cold, and where they are just one of the group of other boys/men or girls/women who have no other alternative. They are castoffs. Unwanted. Unteachable. Unloved. They have no place in society in their country. They will die in this place.
There are ways to help. Sponsor a family. There are so many who are struggling to get the last amounts that they need to travel. There are just as many who are just starting their journey to bring home their children. Donate to the children who are waiting. PRAY. Pray that families come forward for the forgotten children. Pray that they can hang on until their families get to them to bring them home. If you can’t do anything else, PRAY.
Oh, I totally "get" the activity level. Of my 6 kids, my 24 year old and Axel are the only kids I've had with a normal activity level. With Axel sometimes I forget that he's doing something...like sitting on the toilet. He's just so QUIET sometimes! My now 22 year old was inpatient at mayo clinic for TWO MONTHS when he was 6 years old because his activity level was SO HIGH and he didn't respond to any meds. Took a long time to get him figured out. He tested at the 99+% on the ADHD scales. Then there is Angela. OMG. At 15 she STILL doesn't stop. If she isn't moving there is other noise coming out of her. She doesn't watch tv, she DOES tv. This is all with LOTS of medication, mind you. She is on 4 different medications and that just makes her activity level tolerable. So she can sit in a chair for 10 minutes at school, etc. The difference between Angela and Axel is that Angela is motor driven and Axel is a mechanical kid. Wants to take everything apart and see how it works. Angela just needs to go, go, go. She can only handle playing with Axel for about 15 minutes at a time because he just doesn't move fast enough for her (and NO running allowed with the halo! LOL)
ReplyDeleteSo, if the doctor starts talking about meds, I HIGHLY recommend them talking to Dr. Capone at Kennedy Krieger. He has done all the best research on kids with DS and dual diagnosis like ADHD and Autism. DO NOT let anyone put T. on Ritalin. Kids with DS don't metabolize it the same way other kids do. I didn't know that when Angela was started on it when she was 6, with devastating effects. But there are lots of meds that work for kids who have Ds. Dr. Capone is the best one to talk to about them.
yes, yes, yes........ I understand the activity level. Nevin was also a VERY active little boy. Whenever we were somewhere like a doctor's office waiting room or something, people would say, "boy he's busy, isn't he?". Then later they would say, "oh, my, he really doesn't stop, does he?" :) I would just exhaustedly shake my head and say "No.... he really, really doesn't ever stop!" People would often ask when he started walking, we would always laugh and say "he never did, he just ran". :) We did do medications, which took some trial and error.... but also had the downside of adding another variable to figure out..... but it did help when we got the right combo. Hang in there.
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