I just had to share this with you all...

[qannie47]

I sent this letter to my DS school today....I am still doing steroid burst, I WANT THE LAST 30% recovery...

 

 

 

 

 

You might recall that during our meeting last Friday, I was a bit surprised that Hoover was not experiencing the same improvement for the last week that I have seen at home.

 

 

 

Over the weekend, I saw much more improvement. While I still saw lengthy times of motoric driven movements, I also saw an impressive gain in self control, reasoning ability, and diminished tantrums. I saw the light return to his eyes. I essentially saw glimpses of my "old ds" again.

 

I was so sure that today was going to be a good day at Hoover. Then the call came about his day and I was truly stymied. Mainly, because this just did not fit the pattern of past episodes. In the past, once I saw a continued, sustained, progression out of his behaviors at home, it spilled over into the rest of his life.

 

Then at bedtime, we had a very interesting conversation...I picked up where I had left off in our earlier conversation about his personal power and good choices. At one point, he said, "But mom, what about my Pandas?". I replied, "DS, your Pandas episode is over". He asked, "It is?", "Yes", I answered. He then asked, "Did you tell Mrs. F and Mrs. S, and Mr. S?". "Yes" With that he started to cry. "NOW NOBODY IS GOING TO BE NICE TO ME AND HELP ME AND GIVE ME BREAKS!". He was truly distressed.

 

As mentioned, while I have in the past seen negative behavior patterns become a knee jerk habit, especially after a longer, intense episode, they usually subside pretty quickly once he is thru with an episode. However, I think I have figured out the missing piece of the puzzle this time around. I think DS, while at the tale end of this episode, is feeling more stable, I don't think he is 100% yet and he does not feel secure enough to let go of the support you all have given him. In other words, I think DS for the past week has been purposely perpetuating it, for fear of losing this support. It now makes sense that I saw improvement at home, but not at school. I don't think it is all about "privileges" for him, I truly think he is not ready completely ready to lose the support yet.

 

I went on to explain to DS that the support he was receiving was not just because of his Pandas. I explained to him that all of you care about him very much, and that is why everyone has reached out to help him. I also explained to him that the support will always be there for him, and that he does not have to have Pandas for you all to care about him. Now this, is more indicative of the DS I know. This makes sense to me.

 

Tomorrow morning, I will remind him about our talk. I will remind him of your continued support, and that he does not have to have Pandas to gain it.

 

I do believe that DS is at the end of this episode, I would put him at 70%, from at home behavior. I am still seeing the motoric movements mainly,and short lived bursts of mood liability, so there is room for improvement.

 

If I am right, and if our conversation hit its mark with DS, Hoover should now experience the same improvement. It may be baby steps for him, because I think he has used it as a crutch, but as he sees the continued support, and he continues to heal, maybe we can put this episode behind us all.

 

Please let me not be wrong again!

[rowingmom]

If your son is only functioning at 70% at home, I would think he still has significant impairment. DD's emotional lability is always the first to come and last to go during a flare. If this is also the case with your son, he may still be having some difficulty regulating himself.

 

DD knows what is expected of her (after years of CBT) for pretty much any given situation that might crop up, but is unable to put this knowledge into action when she is functioning below about 85%.

 

If your son is still having self regulation difficulties, your telling him that he is out of his "episode" may make him feel out of control. I don't think our kids are ever really finished dealing with this. DD knows when she is herxing from changes in her herbal protocols. It could be a big burden for a child, still in treatment, to be told that he is good now and shouldn't be having symptoms or emotions that are not under his control.

 

Our daughter is on an IEP which includes being accommodated for social behaviours out of the norm. She hasn't had to use these accommodations for the last 2 years, but they are still in place and the school knows to expect them at any time. I will give the teacher a heads up if I see things are ramping, but that is it. I have never told them that accomodations could be removed, and I think teachers will be aware of daily ups and downs, accommodating when needs be.

 

DD is fully aware of her IEP, what it contains and how the accommodations help her. Her IEP doesn't include everyone being "especially nice", it includes removal from class for sensory issues during testing, extra time allotted for work/testing or reminders/removal for behaviour. When she was flaring she appreciated all of this help. When she is not flaring the teachers do not accommodate.

 

We try not to let nastiness happen at home either. It is hard when they are ramping and discipline will often result in an outburst. Now that she is functioning at a higher level, talking back is still not tolerated, and will result in priviledge removal after one reminder .

Edited October 22, 2013 by rowingmom

[trintiybella]

Well said rowingmom!

[qannie47]

I can see that my letter may have sounded harsher then reality. My intent in sharing this was really a relief that my "mom" radar was not off. After 3 episodes, I feel like I have developed this weird intuitive ability to read my ds's energy: Pandas/chaotic energy vs End of episode/calm energy...So when I kept sensing calm energy more and more with recent days passing, I was becoming confused that this was not spilling into his school days as in past remission of symptoms. It just wasn't making sense...I felt like my radar was starting to jam. 1 + 1 was not equaling 2 this time around. Something was off. When my ds made the comment about losing his support, my AHA was, now it makes sense. While he was at first distressed after I gave him a truth, it opened the door for him to talk about his feelings that he was apparently having. As we talked, his distress quickly turned to comfort and trust because he now knew that his support was not going to go away. Pandas or no Pandas. At the end of the day, he is still 7 years old, on the high-strung side of the fence, and certainly does not need to be perfect. Today, he had his best day in school that he has had in 3 weeks. Yes, this was a gamble, it could blow up in my face. I certainly hope not.

[T_Anna]

Today, he had his best day in school that he has had in 3 weeks. Yes, this was a gamble, it could blow up in my face. I certainly hope not.

Glad to hear things are improving.

 

T.Anna