The Pressure of Not Knowing (autism)

[melisandes]

I do not know why but tonight of all nights the reality of my son's situation has come down on me hard. I do not know if he will ever learn to speak. I do not know when he will move into a bed or potty train. RIght now we do not even have a firm location of where he is on the spectrum. The only thing we know for sure is that he is a sensory seeker.

Then there are my twins. WIth my older two on the spectrum I wonder and worry if they too will be on the spectrum. What will my life be like with four autistic children? It is just really depressing not knowing anything right now.

 

[Kay1]

No one knows what the future will hold for anyone. That's why therapists encourage us to live in the here and now instead of the past or future. We just have to plan for the future as much as we can then take it one day at a time.

Take good care.

 

[bookwormde]

I am from a long line of aspies and having Autism genetics does not mean that your children will not have wonderful fulfilling lives, it just means that to fit into neurotypical society that they will have to learn skills that others take for granted and as children be supported and accommodated by those around them as they grow up. There are amazing gifts that come along with autism genetics (and I am talking beyond those of the savant nature).

A formal Austism/PDD-nos/Aspergers diagnosis is just a label to help knowledgeable people support them. Let go of neurotypical expectations and timelines for your children and enjoy them for the wonderful beings that they are, they will flourish in their own time an in their own way. The “state of the art” advancing so quickly in how to support our children in many case even with the most classically autistic children’s lives are quite different from their generational predecessors and for the higher functioning kids their futures have potential well beyond that of average children.

If you have not already read it get a copy of Tony Attwood’s “the complete guide to Aserpgers” c/2007 (available on Amazon for about $25) if will give you the base knowledge to understand your older children better an to monitor for any special supports that your twins may or may not need.

There is also a large clinical study of siblings of children on the spectrum being coordinated by Yale University and other outreach centers if you are interested.

Welcome and there are lost of spectrum parents on this thread to support you.

bookwormde

 

[BeckyScott]

Here is the flip side of it, though, keep that in mind:

Guess what? You get to make your own timeline. The regular rules don't apply.

There's none of this nonsense about comparing kids or what kids that age are *supposed* to be doing or trying to one-up annoying moms who spout endlessly about how good their kid is at soccer.

(no offense to soccer)

You've got a "free" card on it. And with more than one, you're practically an expert.

I think we've all been there. I was just thinking something similar last night. I was watching the news, Fox, Geraldo was on (oooh please don't judge me!) and he was covering the story about that poor girl in California who was raped at prom. It hit me wierd. We don't live in California. I don't have a girl. But it was just like "this is the world now" and it scares me that my son is going to have to go out into that world, in his child-like semi-oblivion to danger that really is sweet but the world is not sweet... well you get the point. It just hit me.

 

[Mishetta]

I do not know why but tonight of all nights the reality of my son's situation has come down on me hard. I do not know if he will ever learn to speak. I do not know when he will move into a bed or potty train. RIght now we do not even have a firm location of where he is on the spectrum. The only thing we know for sure is that he is a sensory seeker.

Then there are my twins. WIth my older two on the spectrum I wonder and worry if they too will be on the spectrum. What will my life be like with four autistic children? It is just really depressing not knowing anything right now.

Hi melisandes...while I don't have the wonderful words that bookwormde wrote (she amazes me), I can tell you that I've been there. I have an ADHD child & my youngest has Autism. While I was already pretty sure my younger child had autism before he was formally diagnosed....when I got the formal diagnosis I was stunned, shocked & so depressed. Well, I had to move on & do what I could. My son was non verbal until he was about 4.5 years old. I used to listen to Bon Jovi a lot & had it playing in the house or the car a lot. One day while driving around doing errands, I hear a little voice from the back seat sing "Shot thru the heart & you're to blame, you give love a bad name." The words weren't very clear but I knew EXACTLY what he was trying to say! I nearly drove off the road! I did pull over & with tears flowing out of my eyes & a big smile on my face, I put my face right up into his & asked him "WHAT DID YOU SAY????!!!!" Of course, he just avoided eye contact & as usual, just pretended I wasn't there. He didn't speak another word for days. Then I was actually second guessing myself "did I really hear him sing or did I just want to hear him say something so badly that I imagined it???"

Long story short, my son is now 8 y/o. He knows the words to EVERY Bon Jovi song (even got to shake Jon Bon Jovi's hand last year), he is in a private school but receives SLP & OT at school, as well as he has a volunteer aide that helps him 3-4 days a week. Since my son is in a private school, he doesn't qualify for an Aide thru the school system, but our church was able to find a retired special ed teacher who was looking for something to keep his days busy. My son does have an adjusted ciriculum & while he doesn't test well if he tests with his entire class, he scores an "A" if he tests alone (so now our school is making accommodations for him to be tested on a one on one basis). While his speech is delayed & has his other quirks, he has a lot of friends & is doing a fine job in school. His lowest grade has been a C, but he's gotten mostly A's & B's. He is my love bug.

I don't mean to offend anyone here who doesn't believe in God, but I have come to realize that the saying is true, that God doesn't give you more than you can handle. I do firmly believe that we as parents, were hand picked to be given these special children to raise. No matter what you find out about your children's needs, you will still love them & you will do whatever you have too, to raise them as best you can. Sending you lots of .

 

[Marina Del Rey]

I grew up in the late '60s, the '70s and the early '80s. Ha, I'm still growing up. The tombstone shall be my diploma, as the late great Eartha Kitt said. I was considered "minimally brain damaged" as a child, my generation's lingo for "you're screwed up, but no one knows how" and I was diagnosed High-Functioning Autistic as an adult.

In my childhood, the toilet terrified me. I was a skinny little girl with, apparently, a horrible sense of proportion who was afraid of getting sucked in by the toilet! I couldn't begin to communicate this to my family. Though I spoke, I spoke slowly and I stuttered when speaking at fast or normal rates. I'd also speak fast and incomprehensibly on matters that no one cared about. Wait a minute, I still do that!

I didn't speak until 15 months, and it was a slowly uphill journey since in learning to speak clearly.

I was also born three months prematurely, barely weighing over 1 pound.

No one knew if I could live, much less how far I would come. I believe I can still go farther. I have four children. Three are infants. Two were adopted. I've got no idea what has been inherited from me, what has not, all that fate brought into my hands with these kids nor truly do I know anything about what is to come. I don't know how to read people. If you think you have uncertainties, imagine the daily wonderments your son has. Non-verbal and unintelligent are not synonymous. Many non-verbal autistics have deep thoughts that they can express through the written word.

Everything is uncertain. Yet here we all are, living. Keep going and hoping for the best. The more you know, the more chances you've got for improvement.

 

[iwrbnd]

I know EXACTLY how you feel! My oldest son has ADD/aspergers and when my 3rd son was diagnosed w/autism I was pregant w/my last child! I was so depressed! I worried about my diagnosed children and my unborn baby. That was 7 years ago and they are all doing great. Of course we have our struggles but nothing has been as bad as what I worried about. I missed a lot of the joy of raising my babies because I was so worried. If I could give you advice it would be to enjoy the moment and forget about tomorrow. There is a great Bible verse that says "Do not worry about tomorrow for tomorrow will worry about itself." I wish I had lived by that so I wouldn't have worried away the baby years!!! Hang in there, you're not alone!!!

Another thing I was told that I hung onto is with Autism there isn't a stop sign...no one knows how far they can develop. My boys went waaaay beyond what the experts predicted!!!