Wednesday, May 14, 2014

Ruminations on NLD

Today was a day of major processing. Thankfully I had the day off work, so I was able to do that without interruption. I began reading websites on the topic of Nonverbal Learning Disorder/Disability while on the treadmill at the gym. WOW. There is so much information to absorb! First and foremost, I am extremely grateful to have this new knowledge but it definitely is overwhelming in these initial stages. I stepped into a cozy, hot shower in the locker room and sobbed like a baby. I didn't even care who was listening. The tears were ready. They expressed relief and grief, happiness and sadness.

Here is what I have processed today..

By being hyper-aware of Elijah's delays and needs early on (before he was 5 months old) and getting him as much help as possible through weekly therapies (PT/OT/speech), medical intervention and the school system, we have inadvertently tackled some challenges way ahead of time with his NLD (nonverbal learning disorder). As I read through website after website on this disorder, every single one describes Elijah as if they know him personally. There are a few characteristics that most NLD kids display at his age, however, that we have managed to avoid by teaching him certain ways of talking/acting/behaving. For example, most NLD kids speak in fairly monotone voices, without much inflection and without using a large range of facial expressions. One of the things we have done with Elijah since he was a baby is to over-exaggerate our inflections and expressions. He learned those behaviors (as well as the associated meanings), and currently speaks with much inflection and he uses many different expressions. Since he was a baby, I have always played the "facial expressions" game with him. "Show me a MAD FACE! Now show me a SURPRISED FACE!" Also, we used sign language with him early on, which helped him to have some reliance on visuals which is really important for him. Now that we are enlightened, we will do these sorts of things with much more regularity. We will explain everything in an attempt to teach him how to generalize and learn cause-effect and understand sarcasm and not take everything literally. This will be an entirely new lifestyle for us, and we are ready to tackle it. It excites me to think up new ways to help him out!

Just in the past two days, Dan and I have immensely renewed patience. And a little bit of guilt. We have punished Elijah for YEARS for things he has had no control over. Ugh. This is a tough one to swallow. Thankfully, he is 7 and his doctor reassured us that we have not caused any damage. We know his "language" now, and we are starting fresh from this point. Dan and I have been implementing new ways of delivering information to Elijah and it has been super helpful. Instead of my usual way-too-wordy lecture, I said to him tonight as he was riding his bike in the driveway, "Elijah! STEP 1! Go inside and do your homework. STEP 2! Computer time." He IMMEDIATELY obeyed, with no whining or complaining. We have also been using the iPad app I mentioned yesterday for bedtime and morning routines. Is it a coincidence that he used the bathroom TWICE tonight completely on his own?! (This NEVER happens. Seriously. Nevvvver.)

I have not received an initial super-supportive response to all of this new info from all parties at Elijah's school, which is disheartening. His school is not familiar with NLD, which is totally understandable, but I wish we would have received the "we will do what we can to make sure Elijah gets the support he needs" response that I was hoping for. From what I understand, even though Elijah was given a diagnosis of ASD by a medical professional, that may not apply in the school system. Also, I was told that NLD is a "diagnosis that is not recognized," which seems totally ludicrous. More to come on all of this, as I'm sure this story will quickly unfold. E's school social worker wants to hold another IEP meeting with the whole team before the end of the year to address all of this new information. I am very much in support of this and grateful she suggested it.

I also gave a copy of Dr. M's report to E's PT/OT tonight. His PT has worked with him since he was a tiny babe, so I appreciate her level of interest, concern, knowledge and compassion as well as her commitment to read through 18 pages of results without complaint. She assured me she would read through the entire report and give me her thoughts next week. Dan and I are finding that we so greatly appreciate professionals who genuinely appreciate our situation and we lean on these people. We have sent up major prayers for his 2nd grade school year and that we become connected with people who listen and genuinely care. This will make or break second grade!

One last thing and then I'll stop, I promise! One of the things I read on an NLD site today is how mothers of NLD kids are often perceived as being super overly protective. Uhhhh, YES! ME! I've been labeled as "overly protective" by family members and friends over the years, and I've always felt defensive. I have always fully understood Elijah's capabilities and limitations and I find myself often thinking or saying (or both), "But he can't DO that!" Not because I have ever wanted to limit him! Goodness, I am an adventurer myself and I wish for the same qualities in my children. I just happen to know that Elijah CANNOT DO CERTAIN THINGS. As his mother, I know what he is and is not capable of and I'm not afraid to protect him. Now I know why and that helps. It also helps to know that I haven't been unwarranted in my over-protectedness. Here is a quote from the following website:
"The myth of the 'overprotective mother' needs to be dismissed; parents and professionals must both assume a 'protective' and helpful role with the child with NLD. Dr. Rourke states, 'Although sensitive caregivers are often accused of 'overprotection', it is clear that they may be the only ones who have an appreciation for the child's vulnerability and lack of appropriate skill development.' Care and discretion need to be taken to shield the child from teasing, persecution, and other sources of anxiety. Independence should be introduced gradually, in controlled, non-threatening situations. The more completely those around her understand this child and her particular strengths and weaknesses, the better prepared they will be to promote attitudes of personal independence. Never leave this child to her own devices in new activities or situations which lack sufficient structure."

That's all for today. Whew, that was a lot! Sorry if I bored you. Thanks for checking in and have a WONDERFUL rest of your week! We love all of you..xo

1 comment:

jencooper said...

Let me know if you need some help with the school issues.

Love you!! I can't wait to start planning our road trip.