Youngest might be on way to autism

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Registered: 09-24-2006
Youngest might be on way to autism
8
Thu, 04-10-2008 - 12:10pm

Hey all. Looks like I don't get to have a typically developing kid after all.

My nearly 5-year-old Kyle has Asperger's Syndrome. Our youngest one, Luke, who just turned one year old recently, seems also to have some issues.

Luke babbled in long complex strings at times for maybe two weeks when he was about 6 months old. After those weeks, he hardly babbled and he still doesn't much - no long string of babble for sure. He also has some feeding issues, yet not to the point that our oldest still has.

For the longest time, I thought (and still do think) that Luke might have apraxia (difficulty making speech sounds and other movements with the mouth). Such kids can have feeding issues with that as well as speech delays. But now, I am wondering if this is just the first sign of worst stuff to come.

I took Luke for his 1-year checkup yesterday. He was supposed to get 3 shots. But, the doctor only gave him one, because he's even worried that maybe, just maybe certain shots (especially the MMR one) do trigger autism. And he's starting to wonder about Luke's head growth - it's now 90-95%, with his weight at 50% and length at 15%. Having rapid head growth in the first year can be a sign of autism. (However, the doctor in the past had said siblings of autistic kids can have larger heads and not have autism.) So, I am to take Luke to a neuro specialist in a few weeks.

There also is talk out about how autism might largely or always be the result of mitochondrial diseases. (The doctor knows about that and wonders about it.) And it's not easy to test for that. Such diseases vary from mild to severe, and they can be crippling or fatal at worst. In a recent court case, our government said that yes, a shot made one girl develop autism because she had an underlying mitochondrial disease.

I am so sad and so angry and have no idea what to do. Do I try to space out all of Luke's shots? Or not have him get some? But if I do that, he can't go to public school. And what are the other possible "triggers" I need to avoid? And was there a trigger for Luke's loss of babble? I really, really hate this.

DH and I put off having a second kid because Kyle was and is sooo much work. We have had to pretty much force feed him for FIVE YEARS. It's either that or he gets a feeding tube. And now, I feel like anytime my other son will develop FULL-BLOWN autism. I am just waiting for the other shoe to drop.

(The only "saving grace" might be that kids who develop regressive autism seems to develop even ahead of other kids until about 18 months, and that hasn't been the case with Luke. But what the heck made him lose babble and will he go on to lose anything else??)

I cannot see how I can manage two kids on the spectrum - one with Asperger's and one with more severe autism. I just don't see how I can do it when I am barely managing now. Kyle's feeding issues alone zap almost all of the patience I have. Just imagine having a kid who rarely wants to eat. As a baby, Kyle did not cry for food even once!!!

I am pretty sure the autism came from me, as my sister has a son with Asperger's. I HATE knowing I passed that stupid gene onto one or both of my kids. It's bad enough I HATE who it came from - that being my abusive father who I think has Asperger's himself. I so wish I could take out all the genes I got from him and dump them in the trash.

I was inclined to believe that we don't receive more than we can handle. Well, two kids on the spectrum, especially if Luke gets full-blown autism, would be way too much for me. I guess I'm a bad mother for saying that, but it's the truth. And I think it would totally end my marriage, too, due to the stress.

Luke right now is on-time for social skills and is active - pulling up on everything, army crawling everywhere and playing with toys and everything he sees. But who's to say it will stay that way?

To put it mildly, this really sucks. Thanks for listening.

Michelle
Mom to Kyle (5-28-03) and Luke (3-28-07)

iVillage Member
Registered: 12-19-2004
Thu, 04-10-2008 - 12:53pm

HUGS Michelle, I can completely understand where you are at. My oldest was diagnosed with ADHD and SPD 6yrs ago. It took over 3 yrs to get him on the track as well as a lot of tears and frustration. Then we just

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iVillage Member
Registered: 03-27-2003
Thu, 04-10-2008 - 2:24pm

Michelle, I can tell how stressed out your are by the things you are seeing in Luke.

                                

iVillage Member
Registered: 04-11-2003
Thu, 04-10-2008 - 3:09pm

Michelle,


First big hugs for you.

Samantha
iVillage Member
Registered: 06-25-2005
Thu, 04-10-2008 - 3:56pm

I second what everyone else said. It's possible he's autistic, but it's just as possible he's not. I guess it's good for me that my kids were dx late 'cus then I didn't have to stress about my NT kids as much when they were growing.

My 11yo NT ds (borderline ADHD and formerly sensory issues) had more red flag issues as an infant/toddler than my AS kids did. He said 2-3 clear words for awhile then lost speech. When he did begin speaking again a couple of years later, his speech was very garbled. He had a tiny body and a HUGE head (all my kids have big heads, but my AS kids were also had big bodies to go with their big heads). He hated the feel of grass, most clothing, and many foods due to their texture. 11yo NT ds is now the most "normal" kid in town. He's a very competent, easy-going (even if slightly hyper) kid, and he's outgrown most of the things that worried me when he was younger.

On the other hand, I DO have two kids with AS, so I know it's very possible to get multiple kids with AS. It's good that your doc is playing it safe with the immunizations.

My 4yo NT dd worried me on-and-off as she grew because I was hyper-sensitive to certain quirks and behaviors. I now know she's definitely not AS, but I understand how easy it is to second guess and worry about their behaviors that mimic AS behaviors. I don't know that you ever WON'T stop wondering about your child until it becomes more clear one way or the other (AS or NT), but at least know it's just as possible for Luke to be NT as AS. I hope for both of your sakes that he's NT. (That said, sometimes I think it's nice to have two AS 'cus then they don't feel as alone in their dx, and it's also easier for them to recognize their own behaviors in their sibling.)

Edited to say I'm "hwife," semi-lurker, semi-poster. My login name has defaulted back to an old login name I forgot I had, and I can't figure out how to get my "hwife" login name back.




Edited 4/10/2008 3:58 pm ET by momnstuff
iVillage Member
Registered: 04-28-2007
Thu, 04-10-2008 - 5:14pm

First of all, please please know that it is not your fault or problem that there may be a genetic connection through your side of the family. I also have three cousins on the spectrum and at least one other uncle and definitely my Grandfather. There is also bp in the family and Liam has a comorbid dx of bp-nos.

It is no different than passing a gene for blue or brown eyes. ie: NOT YOUR FALULT at all:)

The delays you speak of with ds#2 may or may not be ASD; they could also be muscle tone issues. ASD siblings can have certain bits of spectrum symptoms without being spectrum. My dd is case and point. She is a social butterfly, charming etc, but has some sensory seeking behaviours and sleep regulation problems. At age one I thought she'd never eat other than nurse and then the past week or so she seems to have discovered table foods with a vengeance (today she ate an entire kids sub from subway;)

As for vaccines, I have delayed all vaccines for dd until age two and then she will get only what she needs (after age two many of the initial vaccines aren't relevant as the infant state is over. All but two states offer religious and/or philosophical exemptions, so do not worry there. Also know you have until age 5 to really worry about school and shots.

Have you called EI to assess your ds#2. Getting EI this early would be fabulous; many sensory issues and even feeding issues can be significantly improved if early intervention starts this young. I only wish we had EI for Liam, for Cian (AS) we had speech from age two but no OT etc until age 4.

(((HUGS)))

It is not your fault, and with your ds#2 being so young the future is so foggy it can seem fearful. You have a great pedi, stick with him and follow your gut.

Dee

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iVillage Member
Registered: 05-19-2005
Thu, 04-10-2008 - 9:23pm
Michelle, I could just cry reading your post. I am right there with you and I totally understand. My second son is only two months old, but I'm already stressing over eye contact issues. My biggest fear is having another son with ASD and I know it could easily happen. He is a totally different kid than my first, but I know that doesn't mean much. I don't have much advice, just HUGS and know that you aren't alone.
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iVillage Member
Registered: 01-25-2007
Fri, 04-11-2008 - 4:58am

Michelle,

The worst part of all this is that we tend to imagine things much worse than they really are. The truth is my husband has a large head and so do both of my kids. My son is an aspie and I think he takes after me more than my husband. My daugher is NT and just received a full scholarship to college and my husband works for an Ivy league university. So big heads don't necessarily mean your child's future is bleak. It is important to search for the positives and don't let yourself sink into hopelessness. There are lot of great role models on this board who have multiple children on the spectrum and they are managing it. It wouldn't have been their choice but you deal with what God gives you. If it does happen you will manage it too. Give yourself credit. You are a lot stronger and more resilient than you realize. Time and energy can be wasted worrying about why it happened but that wont change anything so don't beat yourself up.

iVillage Member
Registered: 06-25-2003
Fri, 04-11-2008 - 8:31am

Michelle,

It is very early days yet, and no-one has a crystal ball. You have two things working in your favor: A great pediatrician and the fact that Luke is so young. Intervention now can make a huge difference.

Peter had regressive Autism. You should see him now! He is manistreamed in 4th grade and his teacher adores him. I'm not saying things were not tough when he was little (he was our first, too) however he has progressed and done amazingly well. Regressive Autism is not always as horrible as many people make it out to be.

It is a lot easier the second time around. I had a much better time dealing with doctors and school districts with DD than with DS because I knew better what I was doing the second time around and because they took me more seriously.

Also there are advantages to having an all-Spectrum kid household. You just set up the Spectrum, structure, routines and schedules for everyone, and there is no confusion, no favorites and no whining (OK some whining).

I hear you on mitochondrial disease. I have a chronic illness and mitochondrial disease was mentioned as a possibility in *my* case a few months ago. I have been trying to find a doctor in NYC who can help me rule it out, to no avail. I do think it is an important factor, but don't allow it to become a distraction from Luke or quality time spent with him.

..and here is the most important thing.

You will be OK. repeat this to yourself often (only use "I" instead of "you" ;) )

You will get through this. Follow your Mommy instinct. It will guide you well. About spacing the shots: research and come up with an answer you are comfortable with.

Also I agree with Dee. Call Early Intervention and have him evaluated. It can't do any harm, might help.

OK I have to get the squiddies off to school. I hope you are feeling a little better today.

-Paula

-Paula


visit my blog at www.onesickmother.com

-Paula

visit my blog at www.onesickmother.com