UPDATED! Think 2-year-old may be on the Spectrum but too scared to find out :( - Page 2

[butterflylover]

Please go ahead and start the evaluations. The pediatricians aren't really too good at diagnosing ASD. I was told over and over by my dd's ped that she was fine when in fact she wasn't. The peds don't specialize in ASD so it is best to go ahead and starting testing. It certainly can't hurt but it will make you feel better if experts can reaffirm what the ped says. The ped isn't the person who has to teach and raise your child. Early intervention is key!
 

Originally Posted by JFTB1177 

Thank you so much for all of the advice! So dh took DS to the ped for his 2-year appt (yeah we are a bit behind lol), and told the ped about his behaviors and she wasn't worried at all! She even told dh (in reference to ds's head banging) that he knows how hard to bang so that he won't get hurt. So, what to do? She had him do a few exercises and he followed her directions so she seemed satisfied. She just said to work with him on 2-word sentences. Dh seems content too that DS is fine. I still think he needs an eval, but dh doesn't agree. What to do??? :(

ETA: Sorry I haven't responded to each individual post, I've been so busy- I will go back and respond as soon as I can, I promise! I really appreciate all of the feedback! :)

[JFTB1177]

Question- does insurance cover private speech therapists?? I really want him evaluated but I'm having trouble getting dh on board - how did you all deal with this, those of you whose dh's weren't on board or were in denial that there was an issue?

[shelbean91]

I now have 2 dx'd with autism.  Get the eval.  You'll either get a dx or you'll get the all clear.  Knowing is the only way to move forward.  If your dh is sure there's nothing wrong, then this will confirm that.  The label will NOT change your child, it will simply help you find out the best way to help him.

I don't remember asking dh, I just told him we were getting it done-there was a speech delay and EI could help - at that point, autism wasn't suspected by me at all.  with my ds2, I was sure it was autism, even before the eval - dh didn't think so, but honestly, he really is clueless - I'm the one who does all the therapy, IEPs, etc.  Ds2 was a little harder for me b/c he's milder, so it was harder/took longer to figure out, but it was also easier b/c I knew what to expect.

It was scary, the unknown, but ultimately, not knowing doesn't change things - I mean, if someone thinks they have cancer and never get tested, does that mean they DON'T have cancer?  Of course not, it just means they're delaying treatment that much longer if they have it and they're delaying the relief of the all clear if they don't.

The actual eval is really not a big deal.  Just questions and observations.

[Emmeline II]

Originally Posted by JFTB1177 

Question- does insurance cover private speech therapists?? I really want him evaluated but I'm having trouble getting dh on board - how did you all deal with this, those of you whose dh's weren't on board or were in denial that there was an issue?

Typically, though there might be a limit of visits per year. I didn't ask dh, I discussed it with him, but found the providers and made the appointments myself and told him when they were.

Whatever label he may get now is likely to change more that once in the next several years since he is so young. And not getting help, if appropriate, will not prevent labels; the labels may just end up being related to discipline instead of disability.

[kbins]

Perhaps your DH downplayed the delays, even subtly? the peds generally are not quick to refer out if the parent seems reluctant.

I had a ped who "wasn't concerned" at 2 when DS had limited speech and other issues. I pushed her for the evaluation referral (we did need one for speech eval). Grateful that I did. He would not have 'caught up' on his own. However, having had a daughter with delayed speech, which resolved itself once she got ear tubes, I can see why they don't just send every kid out to speech therapy for slight delays.

I had a DH who thought it was all a bunch of baloney - couldn't understand how OT and ST would help our DS. We had some real fights and I nearly had to go around him to get DS evaluated. Not our best marriage moment. But DS needed the help, I just knew it, and was willing to battle on this one.

Like other posters, it took DH awhile (6 months? I don't recall exactly) but he came around, when it was evident that there WAS in fact something "wrong" and that the therapy was helping but that it was going to have to continue. (the written evaluation was very helpful, it was black and white and showed charts and data on the specific delays). DH was good about doing exercises and following the ST instructions, I think the issue was he needed to know what to do. The uncertainty was the big issue for him. DH has also thanked me multiple times, has publicly complimented me for being DS's advocate and is the first to say that DS would not be where he is without that early intervention.

It seems to be a common theme I hear in real life, that the dads have a hard time, especially with sons, accepting that there may be something "wrong".

I'd call the ped office back, say you want a referral to a ST for evaluation, they should provide it with really no more discussion than that.

The offhand comment that head banging is normal, concerns me. A good ped shouldn't say that. Did they do the autism checklist at 18 months? The AAP recommends screening (it's a 1 page checklist, if I recall) done at 18 mos and 24 mos.

[kbins]

Insurance coverage - many states now require private insurance to cover speech, occupational therapy and other therapies under the autism label. texas is one that requires coverage under medical insurance, but only to age 6. That's why timing is important as well. Originally, our insurance only covered speech therapy to age 3. You need to get started sooner rather than later.

You probably need a referral. ST and OT's (and PTs) need a doctor's referral to practice. Not just an insurance requirement. I think it's licensing or something.

We had much better coverage, better provider selection, more in depth therapy, through our private providers/insurance. We paid copays and coinsurance. We didn't go with public EI. It wasn't cheap but was worth it.

ETA: I see from prior posts you're near Kennedy Kreiger. What a fabulous resource. However, you may have weeks of wait to get in, first for the eval, and then for any actual therapy. Don't wait 6 months for one location, start wherever you can and then if you can get in at K-K, do so later.

[seekstruth]

I understand that you do not want to label your son or that you fear there might be something wrong with him  We all wish for our children to be healthy, happy and issue free.  That being said, we live in a very toxic world and is difficult for our children's pure and precious bodies and minds to handle all these toxins.  My son is on the spectrum, I knew that something was not right and when I finally decided to confront everything I uncovered so many things that have helped him.  I highly suggest you read Dr. Kenneth Bocks book and/or the latest book by Dr. Julie Buckley (both books can be found on amazon).  This can help you to understand that your son might have some medical issues that might be attributing to his behavioral issues.  These two books were lifesavors to me, I hope they help you on your journey to help your son be the happiest and healthiest he can be...

[APToddlerMama]

Originally Posted by JFTB1177 

Question- does insurance cover private speech therapists?? I really want him evaluated but I'm having trouble getting dh on board - how did you all deal with this, those of you whose dh's weren't on board or were in denial that there was an issue?

Typically not.  When I worked in EI, we would verify insurance and bill them if the family's insurance covered it.  I would estimate 80% did not cover speech for developmental delay which was what nearly all kids receiving speech therapy were under because very few had a diagnosis of ASD or apraxia prior to age three.  I believe insurance now has to cover for autism, and many just do cover for apraxia, but I am not certain.  You can call your insurance company and find out for sure.  Otherwise, you can try the EI route and ask for a new therapist if you are unhappy. 

As far as DH... I just told him I WAS having DS evaluated.  It wasn't up for discussion.  I acknowledged his fear and shared mine.   I said he didn't have to be there, and he chose not to come (had to work anyhow).  I wasn't about to waste time waiting for him to get on board and knew how long that could take.  Here, it takes about a year to get in to see a developmental pediatrician.  I didn't feel I had weeks or months to wait for him to come around.  Also, I pretty much told DH we were doing the GFCF diet which he initially balked at, but did end up getting on board.  I just reminded him that if we were doing everything and DS turned out to be fine, we would have lost nothing, but if we didn't do anything, we couldn't turn back when DS was ten years old and intervene during such a critical period of language and brain development. 

[Linda on the move]

Insurance paid for speech therapy for my DD. At the time, she was labeled as having speech delays due to chronic fluid. She also had tubes. You need to check YOUR insurance -- they are all different. They may have certain hoops to jump through, or certain limits.

As far as my DH, he's managed to live in an amazing amount of denial. I just do what needs to be done. At times, it's driven me bonkers. At other times, I think it's all good. May be it's good for a child to have a parent who just can't see that there is anything "wrong" with them, may be that's been good for my DD in a way. It wouldn't be good for her if we were both like that or if I let his denial make decisions. So I make everything happen that needs to happen, and he just enjoys her exactly the way she is.

He has had moments when it gets through to him, and he has thanked for taking care of everything. When it does get through to him, it kinda freaks me out, because I get this "oh god, it is as bad as I think" feeling.

[Lollybrat]

Originally Posted by JFTB1177 

Question- does insurance cover private speech therapists?? I really want him evaluated but I'm having trouble getting dh on board - how did you all deal with this, those of you whose dh's weren't on board or were in denial that there was an issue?

It really depends on the specific policy. And policies can vary so much. Some will cover speech therapy for developmental issues. Others will not, but make an exception for Autism Spectrum Disorders. Other policies will not cover speech therapy for ASD.

So you really need to contact your insurance company or talk to your (or DH's) benefits coordinator, if you have insurance through an employeer.

Our family has had several different policies, due to job changes. The policy we had first did not cover DS's speech therapy until he got the autism diagnosis. Before then we were able to get private speech therapy through a grant from a local organization. Our current policy does not cover speech therapy for ASD or any other developmental disorder. So now, DS gets all his speech therapy through school.

[oceanbluemomma]

My 2-year-old has many weird behaviors. He is very affectionate with family members he knows, but not at ALL with family he doesn't know, or strangers. He toe-walks, head-bangs (usually in his crib when trying to get to sleep), body rocks, has a definite language delay (has a few words that he repeats), will pull us to what he wants (grab our hands and pull us to the fridge if he wants some juice, etc), he understands language much better than he speaks because he will respond and seems to know what we're talking about maybe half of the time. He has bad tantrums (but is not aggressive, he just cries and throws himself on the floor etc) about "stupid" things, will cry hysterically over "stupid" things like his fav show ending (he doesn't watch tv all the time but we let him watch his "Yo Gabba Gabba" sometimes), he LOVES music, even classical music - we taped Classical Baby on HBO and he will sit entranced OR he will "dance" like the cartoon characters, or spin, etc.

Diagnosis or not, their are some health red flags I am seeing from your behavior description.  Head Banging and toe walking are indicators of bowel pain and/or discomfort.  Body rocking as well.  They head bang out of ability to tell you they hurt or are nauseated or they have craps.  Toe Walking also occurs to relieve the pressure on the bowel - check to see if he does it right after he has a bowel movement-if not or it is random - clear indicator of bowel issues.  Tantrums over "stupid" stuff - non violent - artificial food colorings, gluten and casein in tolerances cause this as well.  Staring at the TV, fans, moving objects for extended period of time is soothing - distracts from discomfort in the body.  Think about it, when nauseated or feeling sick -people zone out to the TV, movies, and want to be by themselves more than not.  Spinning - form of stimming.  

So you have options - label----does your state cover for Autism in your Healthcare? IF not - it that diagnosis can cause your insurance premiums to be higher if you switch insurances.  You do not need this diagnosis to get speech, ot or PT.  A simple script from a ped can get you that.  He is young so the label isn't necessary for school IEP coverage yet.

Have you heard of a DAN! clinician? They work on the medical aspects that cause the behaviors - they will help heal the bowel, help identify if you are dealing with any deficiencies or allergies.  They will work with you to identify if he has yeast overgrowth in his bowel or strep, if he is processing food correctly and more.  Many alternative doctors address this as well as they want to heal the body not just treat the symptoms with a "bandaid".  I would strongly consider getting him on a gluten free casein free diet immediately.  This is a very easy step to take and many see results or changes in behavior in just a few weeks time.  Do not use Soy milk - similar make up to casein.

If you don't mind - let's talk poop.  I am going to assume he is either a constipation kid - not pooping 2x a day -soft solid banana chocolate pudding color or he has explosion diapers sometimes a lot sometimes random or they stink or dented as in more square shaped.

Bock's books are great so is Children with Starving Brains.  Also consider checking out www.tacanow.com and signing up to have a mentor - you do not have to have a diagnosis.  www.generationrescue.com also has an option to sign up for an "angel" .  All of these are families who are dealing with what you are dealing with.

Whether it is "autism" or not - he has some medical stuff that should be looked into.  If you want to talk off list, just PM.  More than happy to help.

[JFTB1177]

Thanks! I really appreciate any and all advice. :) I emailed an intake form to EI last night... dh doesn't agree with me still but I feel it's something I need to do... I feel nervous but better that at least I'm making a step to do something!

OT but today DS (the one I am concerned about) did something he has never done before... he came up to me, gave me a kiss, and said "mama" (very quietly)...I could have cried! :)

[JFTB1177]

Still haven't heard back from EI- frustrating. Well I guess it is a holiday weekend. I have a question- our insurance packet says it covers speech therapy if a doctor prescribes it... at least I think that's what it says! Have any of you had speech therapy covered by insurance??

[APToddlerMama]

Originally Posted by JFTB1177 

Still haven't heard back from EI- frustrating. Well I guess it is a holiday weekend. I have a question- our insurance packet says it covers speech therapy if a doctor prescribes it... at least I think that's what it says! Have any of you had speech therapy covered by insurance??

EI has 45 days from referral to have an Individualized Family Service Plan in place.  I'd keep track of that date so you can pull it out if you need to.  It isn't uncommon at least where I live for them to use every last day... As far as the script/insurance coverage, the script might be the only piece necessary, but more likely, it is one piece and the specific diagnosis is the other part that will determine coverage.  Call them and find out if speech is covered for "developmental delay" under your plan.  If it isn't, chances are, for a while at least you will have to use EI or pay out of pocket. 

[buttercup]

Originally Posted by JFTB1177 

Still haven't heard back from EI- frustrating. Well I guess it is a holiday weekend. I have a question- our insurance packet says it covers speech therapy if a doctor prescribes it... at least I think that's what it says! Have any of you had speech therapy covered by insurance??

Also be aware that there is 2 types of speech therapy - habilatative versus rehabilative that are covered or refused by insurance.  The PPO plan that I had would only cover rehabilatitive speech therapy - meaning if you had an accident that caused impairment with your language, ie a stroke, and the therapy is to help them regain skills that were lost.  Then habilatitive therapy is to help them reach developmental milestones that they can function in life

[JFTB1177]

I have an appt with EI!!!! It's set for the 28th. The lady I spoke with said they will need his immunization records.... why?? We are putting off his MMR and CP vaccines for a bit and I don't want to hear any crap about that. Has anyone here who used EI had to give your child's vaccine records?

[Emmeline II]

Originally Posted by JFTB1177 

I have an appt with EI!!!! It's set for the 28th. The lady I spoke with said they will need his immunization records.... why?? We are putting off his MMR and CP vaccines for a bit and I don't want to hear any crap about that. Has anyone here who used EI had to give your child's vaccine records?

EI is through the school district and school districts like to know that stuff .

I'd look up the statutes for your state regarding ECI and see if there is anything on immunizations (mine looks like this http://www.dars.state.tx.us/rules/index.shtml).

[Aridel]

Originally Posted by Emmeline II 

EI is through the school district and school districts like to know that stuff .

I'd look up the statutes for your state regarding ECI and see if there is anything on immunizations (mine looks like this http://www.dars.state.tx.us/rules/index.shtml).

In most states EI is not through the school at all & children who are receiving EI services are able to transition to school-based services at age 3 (exactly 3, on their birthday it changes over) if they qualify.  Vax status often only matters if the child attends a playgroup at an EI facility, not for home services.  It depends on the state.

ETA: EI asks, but whether it impacts services depends on state regs.  They need the record for center-based services & probably to document any health risks/needs for staffing (eg. pregnant staff person not going out) as well as for state records.

[JFTB1177]

Originally Posted by oceanbluemomma 

My 2-year-old has many weird behaviors. He is very affectionate with family members he knows, but not at ALL with family he doesn't know, or strangers. He toe-walks, head-bangs (usually in his crib when trying to get to sleep), body rocks, has a definite language delay (has a few words that he repeats), will pull us to what he wants (grab our hands and pull us to the fridge if he wants some juice, etc), he understands language much better than he speaks because he will respond and seems to know what we're talking about maybe half of the time. He has bad tantrums (but is not aggressive, he just cries and throws himself on the floor etc) about "stupid" things, will cry hysterically over "stupid" things like his fav show ending (he doesn't watch tv all the time but we let him watch his "Yo Gabba Gabba" sometimes), he LOVES music, even classical music - we taped Classical Baby on HBO and he will sit entranced OR he will "dance" like the cartoon characters, or spin, etc.

Diagnosis or not, their are some health red flags I am seeing from your behavior description.  Head Banging and toe walking are indicators of bowel pain and/or discomfort.  Body rocking as well.  They head bang out of ability to tell you they hurt or are nauseated or they have craps.  Toe Walking also occurs to relieve the pressure on the bowel - check to see if he does it right after he has a bowel movement-if not or it is random - clear indicator of bowel issues.  Tantrums over "stupid" stuff - non violent - artificial food colorings, gluten and casein in tolerances cause this as well.  Staring at the TV, fans, moving objects for extended period of time is soothing - distracts from discomfort in the body.  Think about it, when nauseated or feeling sick -people zone out to the TV, movies, and want to be by themselves more than not.  Spinning - form of stimming.  

So you have options - label----does your state cover for Autism in your Healthcare? IF not - it that diagnosis can cause your insurance premiums to be higher if you switch insurances.  You do not need this diagnosis to get speech, ot or PT.  A simple script from a ped can get you that.  He is young so the label isn't necessary for school IEP coverage yet.

Have you heard of a DAN! clinician? They work on the medical aspects that cause the behaviors - they will help heal the bowel, help identify if you are dealing with any deficiencies or allergies.  They will work with you to identify if he has yeast overgrowth in his bowel or strep, if he is processing food correctly and more.  Many alternative doctors address this as well as they want to heal the body not just treat the symptoms with a "bandaid".  I would strongly consider getting him on a gluten free casein free diet immediately.  This is a very easy step to take and many see results or changes in behavior in just a few weeks time.  Do not use Soy milk - similar make up to casein.

If you don't mind - let's talk poop.  I am going to assume he is either a constipation kid - not pooping 2x a day -soft solid banana chocolate pudding color or he has explosion diapers sometimes a lot sometimes random or they stink or dented as in more square shaped.

Bock's books are great so is Children with Starving Brains.  Also consider checking out www.tacanow.com and signing up to have a mentor - you do not have to have a diagnosis.  www.generationrescue.com also has an option to sign up for an "angel" .  All of these are families who are dealing with what you are dealing with.

Whether it is "autism" or not - he has some medical stuff that should be looked into.  If you want to talk off list, just PM.  More than happy to help.

Thanks for this info!!! :)
 

[buttercup]

Originally Posted by oceanbluemomma 

My 2-year-old has many weird behaviors. He is very affectionate with family members he knows, but not at ALL with family he doesn't know, or strangers. He toe-walks, head-bangs (usually in his crib when trying to get to sleep), body rocks, has a definite language delay (has a few words that he repeats), will pull us to what he wants (grab our hands and pull us to the fridge if he wants some juice, etc), he understands language much better than he speaks because he will respond and seems to know what we're talking about maybe half of the time. He has bad tantrums (but is not aggressive, he just cries and throws himself on the floor etc) about "stupid" things, will cry hysterically over "stupid" things like his fav show ending (he doesn't watch tv all the time but we let him watch his "Yo Gabba Gabba" sometimes), he LOVES music, even classical music - we taped Classical Baby on HBO and he will sit entranced OR he will "dance" like the cartoon characters, or spin, etc.

Diagnosis or not, their are some health red flags I am seeing from your behavior description.  Head Banging and toe walking are indicators of bowel pain and/or discomfort.  Body rocking as well.  They head bang out of ability to tell you they hurt or are nauseated or they have craps.  Toe Walking also occurs to relieve the pressure on the bowel - check to see if he does it right after he has a bowel movement-if not or it is random - clear indicator of bowel issues.  Tantrums over "stupid" stuff - non violent - artificial food colorings, gluten and casein in tolerances cause this as well.  Staring at the TV, fans, moving objects for extended period of time is soothing - distracts from discomfort in the body.  Think about it, when nauseated or feeling sick -people zone out to the TV, movies, and want to be by themselves more than not.  Spinning - form of stimming.  

So you have options - label----does your state cover for Autism in your Healthcare? IF not - it that diagnosis can cause your insurance premiums to be higher if you switch insurances.  You do not need this diagnosis to get speech, ot or PT.  A simple script from a ped can get you that.  He is young so the label isn't necessary for school IEP coverage yet.

Have you heard of a DAN! clinician? They work on the medical aspects that cause the behaviors - they will help heal the bowel, help identify if you are dealing with any deficiencies or allergies.  They will work with you to identify if he has yeast overgrowth in his bowel or strep, if he is processing food correctly and more.  Many alternative doctors address this as well as they want to heal the body not just treat the symptoms with a "bandaid".  I would strongly consider getting him on a gluten free casein free diet immediately.  This is a very easy step to take and many see results or changes in behavior in just a few weeks time.  Do not use Soy milk - similar make up to casein.

If you don't mind - let's talk poop.  I am going to assume he is either a constipation kid - not pooping 2x a day -soft solid banana chocolate pudding color or he has explosion diapers sometimes a lot sometimes random or they stink or dented as in more square shaped.

Bock's books are great so is Children with Starving Brains.  Also consider checking out www.tacanow.com and signing up to have a mentor - you do not have to have a diagnosis.  www.generationrescue.com also has an option to sign up for an "angel" .  All of these are families who are dealing with what you are dealing with.

Whether it is "autism" or not - he has some medical stuff that should be looked into.  If you want to talk off list, just PM.  More than happy to help.

just supplementing this post:

www.autism.com provides the list of DAN clinicians, but also vast amounts of info for parents.