One of the main things we would love more than anything would be to hear Nolan speak to us. We want to know his thoughts and feelings on top of hear what he knows in his academics. We want to really be able to talk with Nolan and be a part of his life.
We have continued working on communication in any and all forms. He uses sign for somethings (eat and jump) and then his talker for food and beginning to have it for my turn your turn. We continue to teach and work with the talker. We are approaching language in a variety of ways so we are best able to help know what Nolan wants/needs. That being said, we still want to hear his sweet voice.
Nolan started the Nemechek protocol on October 28. Since then, he has made so much progress his teachers felt it necessary to move his IEP date up to rewrite his goals. The only goal Nolan had not met (and honestly were struggling to get him to meet based on some regressions) was language. They noted his color looked better, he was more aware, he was redirectable, he was happy. They were so impressed with his progress, they are recommending it to other parents and looking more into it themselves.
- Nemechek Protocol Book
- Fish Oil Gummies (1 gummy 2x a day)
- Inulin Powder (1/4t 2x a day)
- approved Extra Virgin Olive Oil (on all the foods we can think of to add it to. We use it in our cooking and baking and drizzle it on his favorite foods he already eats)
Though we have seen an increased awareness and some things going much smoother, we are not noticing an increase in language or trying of foods. We plan on continuing the protocol to observe we we see these things improve.
In January we noticed a correlation between his sleep meds and extreme language regression in January. Though his neurologist doesn’t think the meds are the cause, he gave us the ok to go off the meds and test. He said we could cut them cold turkey with a 1 month break between the cuts. We cut the med he got added when the regression started, and that night was horrible. HORRIBLE. We decided a slow wean instead. From January 19 though February 4, we cut 1/4ml a day. He did fairly well with the wean only having a couple nights of waking–and they were for short periods of time. Since being off the meds completely, we have a couple bad nights but in general its going much better than planned.
With both things in place, we have noticed an increase in babbling, an increase in verbally copying us and the talker, use of the talker (at speech and school). That being said, there has not been much change in his expressive language, self initiated speech, or answering of our questions.
Nolan had one particular night he woke at 3:45 in the morning screaming. He was flailing and crying. He would pull me in for a hug and then push me away. He would give me his feet for massage and then kick me for touching them. He couldn’t tell us anything and we couldn’t get anywhere. It was sad and hard. He doesn’t have the skills to use the talker to tell us what is wrong yet, he doesn’t have any language to share with us, and we had no clue what was wrong for him to copy. It was heartbreaking and in that moment that was when we wanted more than anything to hear him talk to us.
Since being off the sleep meds has not had a poor effect on his sleep, even if language does not change we plan on keeping him off the meds–why put something extra in his body if not necessary. That being said, this was also the med that was there to help with his neuronal instability so if we would notice more issues or even seizure like activity (which he is indeed at risk of), we would need to be open to go back on them.