cord blood infusions...etc

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Hi all - I'm new to this board...have a 5 year old boy recently dx with NLD with "features of aspergers"...some days i feel ok with all of it and feel he is just the greatest kid. other days i am plagued with anxiety about how difficult his life may become - since all i read says, basically, that things get harder and harder for kids with nld as social rules become more complex and school requirements change. since 2.5 he's been receiving wonderful therapies and we're all set with a good iep for kindergarten in the fall. i know im doing all i can to support him and, at the same time, just letting him be who he is and develop in his own time...i think im still in denial though. actually i definitely am. im sad and worried. sometimes i fantasize that i could get him a cord blood infusuion that would miraculously take all of his social axxiety and confusion away.

Especially for the anxiety, I wish there was a magic bullet, too.

I can only say this: as an adult who probably would have been diagnosed as a kid, my "outsider" status allowed me to watch and learn things that other people didn't even see. I don't know if this is by any means universal, but I do think that all the torture I went through as a child has made me better able to deal with complex social problems as an adult.

For instance, people tend to sort themselves in to social groups as adults without even realizing it, and then they have difficulty with other social groups solely because they aren't taking the other people's perspective into consideration. I can see this happening, not perfectly, but better than other adults can. I am better at finding solutions in my neighborhood or in the PTA, for instance, that involve two estranged groups of people.

If you are in a community that is supportive of differences, you'll find that your son will do OK. Maybe more than OK; there is no reason he can't thrive, like my son has. There is so much everyone is aware of now, and so many ways to teach kids how to overcome the gaps. Will it be a smooth road? I won't lie to you, there will be some pretty painful spots, but everyone has challenges in life, and you at least have a pretty good idea what some of your son's will be.

But I have no idea what the cord blood fantasy is about, sorry.

Thank you both SO much for your responses! Momsparky...looking back dyu feel like adults in your life could've helped in anyway with the "torture"?

DW - does ur child have a friend or friends? If so, do you remember at what age he started to be able to really play with another kid?

Adults in my life pretty much sucked with a few exceptions. I can say that DS has it significantly better than I did and is doing better with supportive parents and a mostly supportive school: at the very least, nobody's calling him some euphemism for lazy, nobody's letting bullies go without doing anything about it, and he is getting specific, explicit instruction on the things he has a hard time with (and I KNOW that helped the anxiety because we didn't have it until he was 10)

I got none of those things and still turned out OK in terms of my ability to function; albeit with a lot of scars - I have major anxiety and struggle with depression (had all kinds of diagnoses for those.) I think DS will do better than I did because he knows at least to start looking for the work-arounds when he can't do something the way his peers do.

What's a cord blood infusion?

I just posted a link but it got denied - short answer (because im running around after my toddler ) is to google Joanne kurtzberg at duke university. She currently studies effects on cord blood infusions on kids with cerebral palsey.

Did and does have friends, but it took a while to realize that the relationships weren't "normal," for lack a better word.

My son is one of those Aspies who is a huge sensory seeker, and he was very drawn to other people possibly for that reason. No fear, no shyness, nothing. When very young that seemed to serve him well: he'd just jump in and basically demand attention. But once other kids were old enough to really express themselves, they would often reject those attempts. Still, for a long time he just didn't notice, nor did the adults around the kids. Eventually, of course, first the adults noticed and then he became aware, and it became an issue for him.

Being unusually creative, and pretty bright, he found ways to compensate, again masking the issue. He drew kids in by devising highly attractive play ideas. But, as other kids developed that, too, stopped working for him.

And so on.

Now that we know he is an Aspie, everyone pays more attention to what is actually going on, rather than what appears to be going on, and we do a lot of social autopsies with him to help him interact better. He's also been in speech therapy for pragmatic speech, and eventually was taught to read body language through speech therapy, as well. And he still has a good amount of creativity and IQ, both of which are attractive to peers, even if he is pretty far outside of the big normal social whirl of high school. He loves to act (that is surprisingly common with Aspies) and being part of the very accepting drama crowd helps, and he has made friends through scouting (he loves scouting, being outdoors in nature centers him). He stopped being interested in having lots of friends years ago, as he came to realize he was different from other kids, and I'm not sure I'd call any of his friends "close" friends, but his social relationships seem to be a level that satisfies and works for him. But it certainly was a very rocky road at points, and those kinds of hurdles will probably occur intermittently throughout his life. He accepts that; everyone has their burdens, and having a pretty naturally happy disposition, he's generally OK with his.

It definitely helps that he doesn't have any mood disorder or anxiety co-morbids. Its like we're seeing ASD in a very pure form in him, even if the social attraction isn't very common.

Some things that I think helped his socialization:

1. I was in a new mom's group when he was a baby, and he spent all his early years seeing those same kids every week, and to them he was just part of a group they had known their entire lives. Until age 3 or so when the kids started choosing their own close friends within the group, at least. But, it was a small group and consistent, and both were positive factors.

2. That he was a sensory seeker. That I can't transfer to any other Aspie, although I think some of the other things will help most kids.

3. That I was very involved in the school. Even though I couldn't volunteer in his class (too distracting for him), I was around the school a lot, developing relationships with his peers, teachers, and his peer's parents.

4. Having had a carpool for a weekly activity. That put him in touch with a popular child who smoothed the way for him a lot at school over the years, and served as a very good friend until their interests diverged away from the common pillars of boyhood, like Legos and Playmobile.

5. Being in a very diverse and accepting community. So many adults look at him and immediately see his gifts, the good things about him, and they focus right away on those aspects, which models the behavior for their kids. A child doesn't have to be creative and smart like my son for this to happen; I'm seeing it with all the special needs kids we have. The community just envelopes them, and so most of the kids do the same. Not 100%, but there is a lot of community force to squash the exceptions and make it clear that rejection or bullying are not OK.

6. A school district that has always been willing to listen, experiment, and to do their best for my son.

7. Scouting. Not every county has good scout troops for special needs kids, since it is all volunteer run, but the program has really been great for my son. It is very clearly defined; what it takes to succeed is tangible, and they actively teach leadership skills. He's 16 now, and just earned his Eagle Scout.

8. Drama. It gives you a script