Gifted Issues Discussion homepage Forums Twice Exceptional New here, with newly diagnosed 2E kiddo

I have two boys, ages 10 and 5. My 10 year old has always had "quirks" but they were easily explained away by his doctor since he had numerous health issues in his first 2 years (and I had never held a baby until I had him, let alone be around children). We knew he was a really smart kid, and he is a voracious reader. I'm an extremely fast reader, and he is quickly surpassing me at this point, but we didn't realize that he had a LD as well. I pulled him out of school because he was bored, getting perfect grades, maintaining Principal's Honor Roll status, and my latest favorite, amazing STAR testing scores. He sounds fantastic on paper, but I view his public school success as failure because he wasn't challenged. There was always a few naggling things though. Even though he had near perfect STAR scores in many different subjects, he was only scoring in the 60th percentile in math which is almost a 40% gap between his high and low scores, couldn't retain math facts, tell time accurately, and I swear you could hear crickets chirping when he was trying to tell time. He also has great difficulty regulating emotions, doesn't make eye contact with people for a few minutes when initially meeting them (he's fine after a few minutes though), has extremely specific interests (octopi, whirlpools namely maelstroms, and Star Wars), is extremely anxious, and is the most rigid person I have ever met in terms of routine. He's developed phobias as well, which was of great concern because he wasn't willing to go outside if he saw flying insects (he's been stung twice). He also has great sensitivity to loud, and unpredictable sounds.

We took him to a pediatric developmentalist who diagnosed him as NLD. I feel horrible that I didn't notice this sooner, but the symptoms were always easily explained by his doctors so at 10 years old we are being thrust into 2E. It only took me a week of having him home to realize that things just weren't right, and we have been on this wild ride ever since. There is an amazing amount of guilt over his birth, as we have heard that this could be a result of his extremely traumatic birth which resulted in a resuscitation right after birth since his chord was wrapped around his neck and he was stuck in my pelvis. It was traumatizing for me as well, and took me years to heal and now it's come flooding back tenfold.

At the urging of our Dev. Ped. we had an educational assessment done, and found that he hit the ceiling in a couple areas of his test (verbal), and hit the floor on a couple of sections which confirmed the NLD diagnosis. I took both assessments to our charter school, and demanded an IEP assessment and we are in the midst of it (OT, Psych., SP, Resource, etc.). I recently realized that he also stims, and has a facial tick which I had been watching as it seems to be a recent devlopment. I didn't mention the stimming to the Developmentalist because I didn't know it wasn't typical, and she didn't pick up on it because he does it when he's excited and happy. I mentioned it to the OT the other day, and she is keeping an eye on it during assessments but also feels it could be cause for concern. It could be an NLD thing, or it could be a dual diagnosis. The speech therapist is actually the one that is treating my younger son with some articulation difficulties, so I was able to have a very lengthy conversation with her to familiarize herself with Tyler. She's met him, but he doesn't interact with her yet. She is going to start his assessment on Monday, after my little guy's appt.

Some days I'm ok, some days I just want to crawl in a cave and make it go away. This is my sweet little man who has always struggled through no fault of his own. I've always had major guilt over accepting an induction when I knew in the back of my mind it wasn't quite time but I was showing the beginning signs of preeclampsia, and the induction went wrong. What would he be like if I had just let things happen naturally? My youngest son had a perfect natural birth, and started turning over at 2 days old, running at 8 months, reading at 3, etc. We haven't yet tested him, but he turns 6 next week and we are going to WISC test him sometime this summer. He is obviously highly gifted, and currently he is a few grade levels above his peers without much interest in learning. I have always heard that siblings typically score within 10 points of each other, and I have such mixed feelings about having him tested and seeing the results.

That was a banger of an introduction!

Welcome!

The first thing I want to comment on is your birth trauma. I feel a bit shy to send a hug to someone I've only just met, but I want to! It happens more than you might think that women carry guilt and PTSD round with them for many years after a birth. I hope the birth of your younger son was somewhat healing, but it might be that you'd benefit from some help for yourself around this. I don't know what there is where you are - in the UK there is for example http://www.birthtraumaassociation.org.uk/ and http://www.sheilakitzinger.com/BirthCrisis.htm . You might find the list of research papers on the first site helpful, perhaps.

I am not a neurologist, but your son's 2e issues really don't sound like perinatal brain injury to me, which is what they'd have to be for the birth to be the explanation. Who told you they might be associated with the birth, and on what basis? I'm suspicious of this. Perhaps more biologically plausible might be that they might have been caused by the pre-eclampsia; we now know that PE reflects a fundamental change in the joint physiology of the mother and child, beginning in the first trimester. I've never heard that there is any such relationship, though.

I don't know about your case specifically, of course, but pre-eclampsia can worsen very fast and can be very serious if that happens. Often women are induced without adequate evidence that they really have pre-eclampsia (e.g., induced solely because of slightly raised blood pressure) but it does happen that induction is really evidence-based even though the woman feels fairly normal. There have been enormous advances in the understanding of pre-eclampsia in recent years, so a lot more is known now than anyone could have known when you gave birth to your DS10. If you are the type of person to find more knowledge helpful, you might want to look into this [but watch out for crazy pseudoscience like the Brewer diet sites!]

Have you already got the book
http://www.amazon.com/Misdiagnosis-Diagnoses-Gifted-Children-Adults/dp/0910707677/
? You might well find it useful, if not.

Hi, welcome! Wanted to say - wow, don't beat yourself up about the birth, the docs/nurses/midwives are the ones who are supposed to know this stuff inside and out and make the best diagnoses for treatment, induction, whatever. I know in this day and age mothers and fathers are supposed to be 'up' on every aspect of childbirth and then of course child rearing, but it simply isn't possible most of the time (unless your an obgyn) - and then when it comes time to deliver, a thousand variables come into play.
I love ColinsMum's answer, good stuff there.
My 2e ds9 has some serious quirks as well, some of the 'crickets chirping' while telling time, math rote memorization is a very much an uphill battle for him, and I have wondered about the xtra long 'natural' labor we had - no meds, 'bradley method' over seen by a great female md, natural-birth inclined, who was incredible. But things just a took a long time, and you gotta wonder.
Sounds like you are doing a fantastic job handling things and loving the kids you have - hang in there, glad you found the board!

You are doing the very best for your child with the information you have now. Try your best to turn off any guilt or negative self talk. I had a highly traumatic pregnancy and birth with my first too, and it took me so long to recover and to be able to feel ok about it. I know exactly what that feels like. I'm so sorry.

I bet it won't take long for him to thrive at home! My son was like a new kid once we brought him home.

hi, glad you've joined us.
your description of your son is shockingly similar to my DS7, with the one exception that my son craves novelty (as opposed to rigidity).. I have been searching for a long time for an accurate dx for him but am thinking now that one may just not be out there right now. Mine also has the eye contact issue but only for the first few moments, can't do math facts or any time concepts, is really slow with certain things, is a reading/science/history whiz kid..very intensely emotional.. Has stims that other people have like humming but he does them more than others. He has intense social interest yet rough social skills. I have come to think that he is "touching the autism spectrum" but not ON it. I have been reading a lot about Aspergers but it is such a specific diagnosis that it doesn't quite fit either. Sorry to not have answers but you're not alone!
irene

Hi and welcome,

I haven't had your experiences but I understand the guilt issues and I think it is something that mothers are very good at in so many aspects of their children's lives.

We all have 20/20 vision in hindsight and that makes it very difficult at times to accept the decisions we made based on the information we had at that point in time. It is especially difficult when it relates to medical issues because you are so reliant on the expertise of others and that can make you feel quite powerless. I can certainly relate to the what if's as it is something I do frequently if not daily in regards to my daughter. What if they had diagnosed her earlier, what if she had had more tests, what if I had read and researched more, what caused it in the first place, well you know what I mean.

I don't imagine that aspect of my life is going to disappear or fade away any time soon (if ever!lol). The most important thing is to focus on the here and now and take each day at a time. I'm sure that is what you are doing and I know it's hard but just remember we are here for you.

Chiming in with a similar suggestion to stop blaming yourself for your son's problems/diagnoses.

I know that's tough. My reading has uncovered certain facts that make me VERY sorry that I let an ENT doctor talk me into placing tubes in my son's ears at age two. I thought I was doing the best thing for him because of his recurring ear infections, but his body rejected the tubes and although I thought things had turned out okay, I'm now finding that trauma to the ears at an early age could be what caused his central auditory processing disorder and difficulty filtering noises/sounds/distractions.

So you and I (and every other parent on this list who probably has some version of a similar story to one or both of us) can sit here and blame ourselves for things that were not our faults (obviously we didn't have any way of knowing these things could happen and we STILL don't know if anything we did or didn't do would've changed the outcomes for our children), or we can do everything possible to help advocate for our kids and get them all the help and encouragement they need to become indepedent, contributing members of society.

I think we should do what we want THEM to do:
Focus on the positive and minimize the negative, move forward, and do the best we can with what we have.

My 11 year old son has some similar issues and also had a difficult birth and it was induced. The cord was wrapped around his neck, heart stopped beating at one point, doctor told my sister to turn off the video camera and said we had to get the baby out NOW but I couldn't feel the contractions at all and couldn't tell when I needed to push because they had given me an epidural. The clock kept ticking away as the doctor couldn't get the vacuum extraction thing to work and had to use forceps. I didn't have any problem with my blood pressure that I know of, but I was scared to death and my blood pressure has always gone up with anxiety and I have to take medication for it now. When the doctor saw that I was upset she told me I had to keep it together and push as hard as I could and she slapped an oxygen mask on me. I thought my son was going to die if I didn't push hard enough.

After his birth, I thought everything was okay except that he had colic for 3 1/2 months. At 12 months he tested 50% ahead in receptive/expressive language but 50% delayed in gross motor skills and he had low muscle tone. The muscles in his legs were so weak at 12 months that when we stood him up next to the couch, his legs quivered. I thought he might have CP because I knew a woman with CP whose legs did that when she stood for more than a few minutes. But a neurologist looked at my son for about 10 minutes and said he didn't have CP so he didn't get any kind of therapy and eventually walked on his own at 18 1/2 months. A year later he was reading and I didn't teach him to read. My husband told me that his adult son who is highly gifted also taught himself to read long before he was old enough to go to school. All of the other babies on both sides of the family walked early and were very coordinated. My son could read at about a 5th grade level when he started kindergarten at age 5, could memorize hundreds of words of script and songs for his musical theater class, could count change and could out the correct amount of change for vending machines, could identify words that were spelled out for him that he hadn't been taught, especially science vocabulary words because his favorite book to read at age 5 was a science encyclopedia, could tell time on some analog clocks and it took me a while to realize that he had trouble seeing the difference in lengths on the minute and hour hands on some clocks. He had trouble coloring in the lines and he said it was because it took too long and he hated coloring. He couldn't get OT or PT because he wasn't failing and we were told to homeschool.

My son had some phobias and flying insects near his face was one of them. He was always a sensitive kid. There were some stims when he was very excited when he was younger, but he pointed out that nervous tapping on the steering wheel while driving in city traffic, something I often do, could also be considered a stim. He also had occasional facial tics that would last for a few weeks and then disappear (usually when tired and under stress, like in the last few weeks of rehearsal for a play) but he seemed to be able to control it when it came time to perform. He went for over a year with no tics at all, but when we ran out of fish oil supplements I noticed a few tics again, probably not noticeable to anyone else. He is doing 5 hour long rehearsals again so it could just be fatigue causing it.

I had mixed feelings about having my son tested. I hated putting my son through it but insurance would not pay for any kind of therapy without a diagnosis on paper. I also wanted him to be able to get testing accommodations if he needs them. He is slow at anything that involves writing because of motor dyspraxia/dysgraphia and fatigue issues. We also had a problem with people not believing that he had any kind of disability and that he was really just lazy. It really caused a lot of anxiety when people thought we were lying about his disability. I had to really work on my problem with worrying about what other people think. My sensitive son felt bad because of the way it affected me and the fact that people didn't believe him. At least we have proof now.

The neuropsychologist told us that my son's difficult birth could have caused his issues, but she asked if I drank or took medication during the pregnancy. I don't drink but I had headaches throughout the pregnancy and took medication prescribed by the doctor. I always thought the difficult birth was the cause of my son's difficulties, especially since he had no problems with weak muscles when I was pregnant with him and there is no family history of his issues--except for the migraine headaches.

Testing was a little stressful, I didn't get all the answers I wanted, and I didn't agree with everything the neuropsychologist said (especially the part about it being too late for therapy) but I am glad we did it.

I should probably add that my son did not particularly like being stuck with more labels, but made the best of it with the sense of humor he uses to deal with anxiety. I am sure he prefers the much simpler labels that other kids use to describe him--smart and funny.

Thank you all for the warm welcome, and support.

We had a language assessment today, which went fairly well. He doesn't get pragmatic language at all, so I was not surprised when he scored very low. We have another appointment next week to finish up his language assessment and we'll know more than. Tomorrow he is supposed to finish up his OT assessment and I'm hoping to learn a bit more, and I'm expecting some drama afterwards with stimming and agitation. I was able to schedule a pottery class right afterwards so he has something else to focus on, and hopefully he can enjoy himself and blow off a little bit of steam.

We have discussed some of what's going on with him, but using very general terms. We haven't discussed the "label" but we have discussed that his brain is having to work quite a bit harder in some areas, and we want to know why and what that means exactly. We did also let him know that everyone has areas that are easy, and some areas of their life that aren't as easy and he's no dingaling he knew something wasn't quite right. He's been wearing a watch for the last few days, because he wants to work on telling time which is great.

I have an appointment with the developmentalist for follow up with all the assessment results next month so we can make sure we're doing everything we can for him. The one thing that has been conflicting is that the audiologist said he didn't have CAPD or any other issues, but the Educational Therapist said that his screening was fairly clear that something wasn't quite right and thought it could be more likely Hyperacusis than CAPD but that should have shown up in his assessment with the Audiologist.

The stimming has continued, but I think I'm more in tune with it right now because I know it's not something most neurotypical children do. I don't know if I'm picking up on new stimming, or if it's just stimming with other funky stuff mixed in. He hums constantly, and it's the same melody over and over at times for example.

Sort of off-topic question, but my muscles have low-tone too, especially when I was younger. I couldn't run at all and I am still very weak and can't walk as fast as other people. Do muscle problems go hand-in-hand with some issues?