Talk me off a ledge -- ASD x2

greyt00

I feel like my life is ending.  In a way it is -- life as I know it is over.  My 2.5 year old son was diagnosed with ASD on Thursday.  I knew the eval would result in this and I was extremely anxious.  I had nightmares all week.  He is 46th percentile.  What I was not prepared for is the concern about my 1 year old.  He is quite different from my older son (we have 2 kids, we're done).  The older one had a major reflux incident at 1 year old which triggered not drinking and not eating and then major food pickiness which improved some and then got worse.  He had a speech delay, but so did my nephew who is neurotypical.  He actually spoke more than my nephew.  I didn't start to think they were related until he approached age 2.  In all, we have speech delay, major food/sensory issues, he doesn't wave/point, his play is limited, and he's obsessed with doors and light switches.  The baby is apparently in trouble, according to the expert who evaluated my son.  I've noticed now he doesn't babble much.  It's hard to get his attention with his name.  He'll look if I yell, otherwise it could take several times before he looks.  Why wasn't I worried before?  Because he eats pretty well (no sensory issues) and he plays with all sorts of toys.  DS1 always wanted to push buttons and look at lights and hear noises.  DS2 rolls cars around, puts the little man in the car, takes him out.  DS1 has rolled a car maybe 5 times in his whole life.  Never did it before I showed him, either.  DS2 has brought me a tissue and held it up to my nose.  He tries to drink from the toy coffeepot.  He shows me things a little bit, not a lot.  He'll hand me something and DS1 never did that.  DS2 has pretty good eye contact, he smiles and laughs, plays peek-a-boo and seems normal except for being quiet.  But he doesn't point or wave and it's scaring the daylights out of me.  I can't handle 2.  I just can't.  I feel like the world is ending.  What am I going to do.  We both work, our stupid insurance plans are self-funded, and I'm having a panic attack.

greyt00

In his evaluation, DS1 ranked 46th percentile.  His severity is moderate.  He's not high-functioning, he's not low-functioning, he's in the middle.  I assume this means his symptoms are worse than 46% of kids with the same diagnosis. 

Interesting article.  For now I will cling to hope that DS2 has a feature or two but no full diagnosis and things will be MUCH BETTER.  I'm most disturbed that DS2 doesn't wave or point.  Why can't my kids do this???  I'm also clinging to hope that he has fluid in his ears contributing to a hearing problem, and this can be solved easily.  But wouldn't the pediatrician see that if she looked in his ears?  DS2 seems pretty clumsy.  I'm going to call the nurse about getting him a hearing test (already working on getting DS1 hearing test, and I don't think that is his issue).  Right now DS2 is quite a bit more social.  I know all autistics are different, so maybe at the least, his issues are less severe.  I know he's really young, though, and plenty of time for things to get worse.  Ugh. That's what scares me.

Thank you for the reply!

greyt00

I would really like to know what's wrong with my (or DH's) DNA.... my cousins could have a dozens of children and this would never happen to them.  This is the anger talking.... It's part of the process.  I'm doing the reading, don't worry.   I'm still doing my job.  I did every first step I was supposed to do the day AFTER the eval.  I just desperately wish one of my children would be neurotypical.

Rachel Sonnier

So sorry that you are going through this. I see that you have your DS 1 as a miracle baby on your ticker. I don't know if this means that you previously suffered with IF, but if so, I hear ya. You struggle for years and then you finally get your baby, and poor thing, he has all of these issues, and it is all so overwhelming. Then twice??

You are allowed to have your "WTH God??" moments. However, I know in my case, we prayed for years for a child. Not a perfect child, or a neurotypical child, but any child, to love and care for. And we were blessed, while I have friends who are still waiting to become parents. So for me, that puts it all into perspective, and helps me deal. 

If I am way off the mark, feel free to disregard all of this. I might just be used to seeing things in the lighting of IF. LOL 

Worse case scenario, it will be really hard...but hang in there mamma, you've got this. :-)

greyt00

So sorry that you are going through this. I see that you have your DS 1 as a miracle baby on your ticker. I don't know if this means that you previously suffered with IF, but if so, I hear ya. You struggle for years and then you finally get your baby, and poor thing, he has all of these issues, and it is all so overwhelming. Then twice??

Yes, took me 20 months and surgery to get pregnant.  Went through a very, very dark period.  I know what you're saying, and I think any response I have right now is going to sound ungrateful so I'm not going to say anything.

We wanted to put DS2 in day care at least part time really soon (my parents keep him), but now I think we'd  better wait until we find out how much thersapy costs.  We want to do priovate therapy and may not have any coverage besides OT.  This could use up every penny we have.  But I will probably have to do that so that my parents can help us get DS1 (or both of them, good grief) to therapy.  We'll go broke.

I don't really know how to do the quoting thing correctly so this is probably going to look weird.

greyt00

greyt00 said:

In his evaluation, DS1 ranked 46th percentile.  His severity is moderate.  He's not high-functioning, he's not low-functioning, he's in the middle.  I assume this means his symptoms are worse than 46% of kids with the same diagnosis.  

I've never heard of a clinician expressing it that way. There are lots of scales that are typically done that produce a %tile-

Just saying what was on the report.  *shrug*

"For example- DS last Vineland put his social skills in the 1/10th of 1%tile and yet he manages to attend college without accommodations, travel independently and do most of what his peers do."

Sorry, didn't understand this statement at all: Meaning he was barely on the scale at all (nearly typical?)  Makes sense he would function so well then?

I guess what also makes me so crazy is I worked outside the home and pumped for an entire year.  Both my kids had the milk/soy protein allergy and for DS2, I SEVERELY altered my diet for 8 months.  It was extremely difficult.  I had 3 stomach viruses in 6 months, I was sick a LOT.  The diet really sucked.  I JUST put that behind me a couple weeks ago.  Now this.  No one else in my family has dealt with any of this.  No infertility, no crazy BFing issues, no developmental issues.  And they have MORE kids than I do.

I know, I can't think that way. 

Soapstone

50%ile is average. 1%ile is scoring worse than 99% of the test population. 46%ile means he scored better than 46% of the test population and worse than 54%.

greyt00

I was reading it backward.  I'm going to ask our dr. next time we go.  Not it really matters much, as my DS pretty close to the middle, but I am curious.

Rachel Sonnier

Milk allergy here too. We had to switch from BF to Nutramigen till 18 months.
And I'm sorry, I wasn't trying to make you feel bad, or ungrateful. I was just offering a perspective that helps for me. You are justified in feeling angry and lost. Sending good thoughts your way.

greyt00

No, you didn't make me feel that way.  I make me feel that way.  And I guess I know I'm lucky to have these boys so I'm ashamed for wishing things are different and not controlling my thoughts better.  Thank you for the support.  DS1 was on Neocate until 9.5 months and that's why I was so determined with DS2.

mommyof4boys

I get you! My youngest was diagnosed first and I was ok with it. I knew he was. When kid number 2 was diagnosed, I cried for weeks, sobbed every time I looked at him or thought about it. I was mad at the world! Whe kid three was kindly diagnosed I was pissed at the world...I had waited to have his dx. I knew in my gut he had Aspergers but it took 4 years to hear the dx.

greyt00

Wow, sorry.    I can't imagine.  Extremely challenging.

What in the world do the uninsured do to get therapy?  My plan is self-funded meaning it probably doesn't cover much of this and it doesn't have to.  Everything says AT LEAST 25 HOURS PER WEEK of therapy.  Therapy generally runs more than $100 per hour, right?  I know people are not spending $2500 per WEEK per kid.... do they just take what the school district offers and say that has to be good enough?  OT is covered but only 60 sessions per year.  That's about 3 months 2x/week, 1x/week the rest.  We started that a few months ago.  I'm going to find out the cash pay price for that one.  Speech is about $110 here.  Time to see how much we really are capable of spending every week, and saving NO money, for a few years I guess.  And pray that therapy works miracles and he won't need a whole lot of it for years to come.  And won't have a miserable and lonely life, especially after I die.

august06mom

Have you been in touch with Early Intervention? I know it varies by state, but DS was approved for ABA therapy, and it was all free. If your youngest one is only 1, that's at least two years for you

greyt00

Well, I was really just talking about DS2, for now.  I'm waiting for the therapists to call about his sessions (had him evaluated just a few weeks before the diagnosis), so we can get the ball rolling with that, while I look into private.  It would only be for 5 more months.  True, for DS2, we could get close to 2 years.  I could get him evaluated soon and pay only a low rate for all services for both kids.  We have a sliding fee system here.  I already know the rate from starting things for DS1.  I guess I should get cracking.

This is all taking a lot of time from work.  Vacation is not vacation -- it's crammed full of dr. appt., therapy appt., and evaluations.  Heaven forbid anything bad happen to me any time soon.  Ack.

greyt00

Thanks Auntie (and everyone else, too!)  DH’s plan is also self-funded, so we’re not sure what he could get.  We know his OT coverage is a lot worse than mine – 20 visits per year instead of 60.  DS1 needs OT.  He doesn’t eat much and he’s behind in everything.  Our OT uses sensory integration and floortime approach.  The dr. says he needs ABA but probably not long-term (not sure what her definition is).  I can pay for extra speech because EI only suggested 4x per month.  I imagine he needs 9-10 (twice weekly).  Not sure if it's bad/confusing for him to get it from 2 different people.  i think we will have to use the school district because no way can we spend $10,000/month on therapy. I could imagine spending $2K/month at most.  But not sustainably for more than a few years.

Never heard of “Katie Becket Waivers”, would have to research it.

greyt00

I need his therapists to help me because I have no idea what to do with him.  The OT is having me come back half-way through the session to show me things, but it's hard.  I don't have the energy to do it.

Yes, he has speech delay, by at least 9 months.  He has a lot of issues with feeding.  Will barely anything, wants everything the same all the time.  Probably some horrible combination -- sensory thing with the visual of food, taste and texture, maybe also motor issues and hypotonia.  His diet is terrible and worries me all the time.  I don't think food chaining will help.  It's so much worse than that.  I'm hopeful that behavior therapy will also help with this.  Just an overall "chill him out" sort of thing, maybe.

DH and I both work full-time and between dinner, both kids, and bedtime at 8 PM, no clue how to squeeze things in at home.  We can't do much during the week.  Weekends we can do better, when DH is not working extra.  UGH!  I really can't do anything special when I have to watch them both.