UPDATED! Think 2-year-old may be on the Spectrum but too scared to find out :( - Page 3

[crunchy_mommy]

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?

I was so concerned about this but no one even blinked. They got his records from our doc and no one said a word about him not being vaxed. I'm sure it varies some by state but for us it just wasn't an issue. In fact, all the little things I was worried they'd hassle me over (DS still nursing at 2.5, cosleeping, etc.) they don't even care about.

[Tonia Starr]

My sons ALL had many of the same symptoms...if you desire to call them such. Not one of my oldest three spoke mre than five words until past age two. Suddenly they picked up clear, concise speech at age three. I swear, within a month of each of their 3rd b-days they were speaking full sentences. They are 10, 8 and 6 now and allthree use an extensive vocabulary, with many BIG words. They all took awhile to catch on to phonics concepts, all 3 needed 2 yrs of kindergarten. But at age 8 somthing "clicked" again, and my 8 yr old now reads chapter books withease and my 10 year old is a speed-reading bookworm who can finish a Harry Potter novel in four days! Head banging can often be a normal thing, two of my 5 sons did it at that age.

I am NOT saying there is no cause for concern. YOU know your child better even than  a professional. Trust your heart! BUT I do know what it is like to be a mom and to focus on specific traits with concern. I did it for years.Yet, the children I fretted over are now well adjustd, normal, healthy kids and those traits are long gone. If a dr says its normal, but you don't agree, then by ALL MEANS demand a second opinion. We are our childrens greatest advocates! BUT, if you continue to get reassurance, then just relax and let nature take its course. You an always re-evaluate in 6 months...... It can be sohard to evaluate at this age and many dr's are trepidatious to do so, though it is getting more common.

[Linda on the move]

Originally Posted by Tonia Starr 

My sons ALL had many of the same symptoms...if you desire to call them such. Not one of my oldest three spoke mre than five words until past age two. Suddenly they picked up clear, concise speech at age three. I swear, within a month of each of their 3rd b-days they were speaking full sentences. They are 10, 8 and 6 now and allthree use an extensive vocabulary, with many BIG words. They all took awhile to catch on to phonics concepts, all 3 needed 2 yrs of kindergarten. But at age 8 somthing "clicked" again,

Hello and welcome to the SN board.

I liked your post.   There are few of us here with older kids, and most of us it DID end up being something that was off in our kids development.  One of the reasons that many doctors are hesitant to label such young children is that it's really hard to tell when a toddler is on the spectrum and when they are just a bit quirky and on their own timetable.

I'm a big fan of intervention and speech therapy and all that, but the heavy labels -- not so much. Sometimes, a speech delay is just a speech delay.

[JFTB1177]

Thanks mamas! You see this is why I am SOOOO confused!! Sometimes my DS will display spot-on ASD traits (rocking, covering ears, meltdowns over silly things etc), but other times he seems totally NT (gives kisses with and without asking, loves praise, imitates, uses toys like cars the way you are supposed to ("drives" them instead of spinning wheels), loves playing around with his older brother etc... what to make of this??? I mean, he has a lot of ASD red flags, but there has never been a "disconnect" with him, if you kwim. He's been trying to say more words but seems to still prefer to "pull" us to things. I know "something" is off, he's different than my ODS was at this age. And yet, my ODS went through EI for speech delay and now at 5 years old his speech is off the charts, he's very smart, and no real speech therapy was needed- preschool helped a LOT though.

Thanks also for the info about the vaccines- I called EI today and asked how necessary it is to have my son's immunization record on Thursday and they said no problem, they can always get it later. Good to know they shouldn't hassle me about his missing vaccines!

We have an appt on Thursday and then a 2-hour eval on Aug 1st. Can anyone tell me what they'll do? When my ODS went through them for the first time he was very young (10 months) and they just "played" with him, etc. So I have no idea what this first eval will be like?

[crunchy_mommy]

With DS's eval, there was a 1-hour appointment just to go over things like what our concerns were, medical history, milestones, etc. He actually didn't even need to be present for that portion (although he was). It was just the RN from the EI agency. She asked a lot of questions and I gave her a list we had written of various issues he has. I think the list was really helpful to have, helped us focus our discussion a bit, ensured I wouldn't forget to mention things, and sure saved her a lot of writing while we talked!

The second appt. was a couple of weeks later and it was 2-3 hours with a whole team (speech, PT, play specialist, RN, OT, etc. -- I think 5 people) and they basically tested him. It was testing that looked like playing, so they'd hand him a book and ask him, "What animal is that?" and have him point to pictures on cards and gave him crayons to draw and asked him to run, jump, etc. and played with blocks with him to see if he could stack them in certain ways. They all took turns and DS thought it was great fun (he tends to do really well with adult attention and loved the new 'toys'). He was able to stay on my lap for a portion of the test but once he was a little more comfortable they asked DH to sit near him (DH & I filled out lots of questionnaires and answered verbal questions while they were testing him). Then they all presented their findings and wrote things all up and decided he was eligible for services and we made his service plan (I think this is sometimes done in a separate appointment though).

My little guy does have some red flags for ASD but I think we are really far from being able to diagnose something like that at this point, and I'd guess he's on the most high-functioning end of the spectrum if he's on it at all. He was given a diagnosis of "mixed developmental delay" and from what I've heard it is kind of common to get a vague 'diagnosis' like that. Just mentioning that because I kind of expected something a little more... precise?? Not that it really matters, either way he is getting the services he need (and he may just need time to catch up emotionally/socially/etc.), but it just would have been helpful to know that going into it, that they are not really diagnosticians, just trying to see if your kid qualifies for services.

[Linda on the move]

A big part of this journey for me has been making peace with the not-knowing.

My DD is 14 and we are VERY clear on her dx, but still no one can tell us what it really will mean for her as an adult. We don't exactly how independent she'll be, what sort of relationships she'll have, etc. At 3 they said she had "autism like behaviors" and now she is considered text book Asperger's.

It used to drive me bonkers. I felt like if someone could just TELL ME what the deal was, that then I could make peace with it. Eventually, I figured out that I could make peace with not-knowing.

[alestrange]

Your LO sounds a lot like my son who just turned two in the middle of July. We started with an eval through our regional center for his speech delay - at 20 months, he was only saying 4 words. When the lady came out, she thought there might be a bit more going on and she wanted him to get fully assessed for autism. He was sent to a clinical psychologist who spent an hour and a half with him, labeled him as autistic and went on her merry way. I'm not saying I disagree with her diagnosis, but truly, only a neurologist should be putting that label on your son. I know your post was a month ago, but if your son is still behind in language, I HIGHLY recommend the Baby Signing Time DVD's - since we started my son on those, his language has exploded - he knows about 100 words and is starting to put two word phrases together - all this in about 4 months. He also headbanged - but violently. He would throw himself on the floor and then arch back like he was winding up and slam his head on the ground - the wood floors, the tile, the wall, even the cinder block wall in the backyard. He would also spin around a lot. Like your son, his eye contact is good, but it's like his hearing is hit and miss - at least when we call his name. If a train is going by though, he hears that just fine!

My husband and I were super hesitant to have him labeled because the minute you tell someone else, "My son is autistic," you get this sad "oh I'm so sorry" look on their face. So we tell people as we need to, but mainly tell them the "symptom" if they raise an eyebrow. We say "he has stranger anxiety" or whatever it might be. However, he did start Early Intervention services right away two months before his 2nd birthday and WOW, what a difference. It has helped his speech and tremendously helped his behavior. He used to have these violent temper tantrums, and as you said - they were for no reason or what we considered "stupid" reasons, but he would generally calm if he got his way. I have a few friends who work with autistic children and I'm a high school administrator myself so I have people around to ask questions and help out. Everyone agrees, early intervention is KEY. Call your local regional center to have them do an intake to determine if he qualifies for services. If nothing else, he'll qualify for speech. They might provide other services as well - take whatever you can get. It certainly can't hurt your son to have extra "teachers" around to help him! If it comes out that he is in fact on the spectrum, continue the services, particularly if your son's markers are "mild". My son is very high functioning - knows all his letters and is a whiz at puzzles and everyone that's been working with him says in a few years, we probably won't even be able to notice the markers that labeled him as autistic to begin with. He will always be on the spectrum, but the early intervention will help curb the negative behaviors that he displays and highlight the positive ones. We even went so far as to put him into the "pre-school" with ABA therapy. There is also a website, rethinkautism.com that provides parents with supplemental lessons to work with kids on the spectrum.

I know it's hard and you don't want your son to be labeled. At first, I felt kind of "cheated" that all these other people got perfectly healthy "normal" kids and my son wasn't normal, but I take one look into his gorgeous blue eyes and I wouldn't have it any other way. It's a tough pill to swallow, but I totally understand where you're coming from. No matter what you take from this, I highly encourage you to start early intervention services. If it turns out to be absolutely nothing, then all you've done is help your son get a leg up on his peers by having more one-on-one tutors at this young age! Good luck to you and your son!

[JFTB1177]

Thanksso much for your post! We had my son's eval this morning and I was told he's showing signs of autism but they aren't qualified to dx him, they said I should get a referral for aa developmental ped. He didn't score very well and def qualifies for services. Seeing it in black and white is kind of hard. Feeling emotional today. I mean I've known all this but its still hard when someone confirms it, you know?

[Linda on the move]

Originally Posted by JFTB1177 
Feeling emotional today. I mean I've known all this but its still hard when someone confirms it, you know?

.            

we know.

[crunchy_mommy]

Most of us here really understand. Allow yourself the time to experience your feelings. I'm glad you'll be able to start getting services in place for him.

[Altair]

Sounds like an emotional roller coaster.  Good job for trusting your gut even when the ped said everything was fine-- there are so many options for therapies now and getting started early with speech and OT can really go a long way.  RDI, floortime, sensory gyms, theraputic riding, etc.  Good luck, you'll get through this!

[alestrange]

It's hard but it's AMAZING what a difference makes with early intervention! I didn't have to provide shot records. We delayed getting my son's MMR until he was almost 2, but for no other reason than we didn't want him getting so many shots at each visit so we spread them all out. I am one that doesn't buy into the whole shots causes autism, but that's just my own opinion. Hopefully your regional center is as good as ours in Northern Cali and your son will blossom in just a few short months. The only thing we're trying to work on now with our son is his social anxiety - he hates being around people he doesn't know and freaks out when people come over and talk to him. If he can outgrow that or curb that behavior, I feel like no one would even see a difference with him. I've read kids will outgrow it around 4 years old at the latest. The headbanging just stopped one day - fierce one day, gone the next - just like that. It was awesome, so I'd love for the social anxiety to go away in the same manner.

Good for you for doing the intake with the regional center. Just for some happiness, my son was dx with autism by a clinical psychologist (my apologies, but I don't have much faith in her abilities after spending only an hour with my son), but the developmental ped said he was a totally normal 2 year old. So just because the intake says one thing, it might just be he's a bit behind in one area and the developmental ped might confirm what you think about him being totally "normal". Just make every moment a teachable one and he'll be caught up in no time at all!

[JFTB1177]

Originally Posted by alestrange 

It's hard but it's AMAZING what a difference makes with early intervention! I didn't have to provide shot records. We delayed getting my son's MMR until he was almost 2, but for no other reason than we didn't want him getting so many shots at each visit so we spread them all out. I am one that doesn't buy into the whole shots causes autism, but that's just my own opinion. Hopefully your regional center is as good as ours in Northern Cali and your son will blossom in just a few short months. The only thing we're trying to work on now with our son is his social anxiety - he hates being around people he doesn't know and freaks out when people come over and talk to him. If he can outgrow that or curb that behavior, I feel like no one would even see a difference with him. I've read kids will outgrow it around 4 years old at the latest. The headbanging just stopped one day - fierce one day, gone the next - just like that. It was awesome, so I'd love for the social anxiety to go away in the same manner.

Good for you for doing the intake with the regional center. Just for some happiness, my son was dx with autism by a clinical psychologist (my apologies, but I don't have much faith in her abilities after spending only an hour with my son), but the developmental ped said he was a totally normal 2 year old. So just because the intake says one thing, it might just be he's a bit behind in one area and the developmental ped might confirm what you think about him being totally "normal". Just make every moment a teachable one and he'll be caught up in no time at all!

Thanks for this (and thanks for the hugs from other mamas!). I have a question... what am I supposed to think when on one hand, my son has many asd behaviors, and on the other hand sometimes he seems NT? I'll be honest, he has many red flags (rocking, toe walking, the speech issues, everything else I have mentioned in this thread etc). But he has started bringing us things this last week, just now he brought me a toy money and a little shovel. The shovel is about the size of a spoon and I think he thinks it's a spoon because he put it to my mouth like he was feeding me. He also likes playing peek-a-boo and is super lovable. Am I just grasping at straws?? I go from being in total denial to being totally convinced he has asd. I need a reality check- can kids with asd bring things to show parents and play peek-a-boo? The EI lady said they don't. I told her he doesn't bring things because he didn't until, literally, yesterday. I just don't know what to think.

DH and I went to a class the other night through EI called "More Than Words" for parents of kids that are on the Spectrum or that have "social-communication issues". They teach the Hanen method and are speech pathologists. There were about 4 others couples there and it was nice being around other parents going through the same things. They are going to come out to our house 4 times in the next 4-5 months and videotape DS so we can see the progress he makes. The class goes until Dec and is just for parents.

I also talked to someone at Kennedy-Krieger @ John's Hopkins and they said they get the younger ones in sooner, so it could be weeks instead of months that we get an eval from them. I have heard that the eval there is very involved, and they investigate medical, genetic, as well as social-psychological. Feeling anxious to get on with it and know for sure, but also scared. Question- how do they test your DC outside of the home when kids act different (may not perform) outside of the home, esp in a clinical setting? Alestrange- what did your dev ped do for the eval that was different than the clinical psych?

I know chances are my son is most likely on the Spectrum... I just want to know all possibilities. Thanks!

[JFTB1177]

Originally Posted by alestrange I've read kids will outgrow it around 4 years old at the latest.

What do you mean by this, the headbanging or rocking??

[FarmerBeth]

Originally Posted by JFTB1177 

Thanks for this (and thanks for the hugs from other mamas!). I have a question... what am I supposed to think when on one hand, my son has many asd behaviors, and on the other hand sometimes he seems NT? I'll be honest, he has many red flags (rocking, toe walking, the speech issues, everything else I have mentioned in this thread etc). But he has started bringing us things this last week, just now he brought me a toy money and a little shovel. The shovel is about the size of a spoon and I think he thinks it's a spoon because he put it to my mouth like he was feeding me. He also likes playing peek-a-boo and is super lovable. Am I just grasping at straws?? I go from being in total denial to being totally convinced he has asd. I need a reality check- can kids with asd bring things to show parents and play peek-a-boo? The EI lady said they don't. I told her he doesn't bring things because he didn't until, literally, yesterday. I just don't know what to think.

DH and I went to a class the other night through EI called "More Than Words" for parents of kids that are on the Spectrum or that have "social-communication issues". They teach the Hanen method and are speech pathologists. There were about 4 others couples there and it was nice being around other parents going through the same things. They are going to come out to our house 4 times in the next 4-5 months and videotape DS so we can see the progress he makes. The class goes until Dec and is just for parents.

I also talked to someone at Kennedy-Krieger @ John's Hopkins and they said they get the younger ones in sooner, so it could be weeks instead of months that we get an eval from them. I have heard that the eval there is very involved, and they investigate medical, genetic, as well as social-psychological. Feeling anxious to get on with it and know for sure, but also scared. Question- how do they test your DC outside of the home when kids act different (may not perform) outside of the home, esp in a clinical setting? Alestrange- what did your dev ped do for the eval that was different than the clinical psych?

I know chances are my son is most likely on the Spectrum... I just want to know all possibilities. Thanks!

It seems to me having worked with children as a teacher's aid and in a special needs preschool, that some kids with ASD do start doing things like bringing toys up to the parents and teachers and some don't.  Same with gesturing, approaching people, playing imaginatively with toys, etc.  It's a spectrum disorder, so I think it's pretty hard to generalize about stuff like that - there's too much range.  I think that even at the point there's a diagnoses in hand, sometimes you just have to accept that some things about your child will fit the description of the diagnoses and some won't.  The diagnoses is just a tool to find the right therapies for you child - it's not an exact descriptor.  I've had this same struggle all year with my son and the diagnosing process, especially since he's 11 and of course has gained lots of coping strategies, and also especially because I had certain ideas based on children I'd worked with that didn't seem to match DS.  Add confusion as to why he seems so much better at home based gatherings than school, and it can be overwhelming.  Every child is so different and unique.  I think the only way to cope is to let it go a bit and accept that coming to a diagnoses is not always an exact science.

That's great that your getting to be in a group doing the "More Than Words" program.  The Hanen programs were really helpful to us (both boys, different programs because of very different disorders), easy to use the methods at home, and it's so nice to learn along with and from other adults in the same situation.

Best wishes for your family.

[IwannaBanRN]

Originally Posted by JFTB1177 

Thanksso much for your post! We had my son's eval this morning and I was told he's showing signs of autism but they aren't qualified to dx him, they said I should get a referral for aa developmental ped. He didn't score very well and def qualifies for services. Seeing it in black and white is kind of hard. Feeling emotional today. I mean I've known all this but its still hard when someone confirms it, you know?

I just wanted to say: I am SO proud of you that you followed your gut and didn't listen to what anyone else said and just did what you thought was right for your child! Only a mom can know when something isn't right. Even your DH didn't see a need for testing, but I say good for you! You are such a good mommy, and your son is so lucky to have you!!! Good luck in your journey ahead!

[EarthRootsStarSoul]

Originally Posted by JFTB1177 

Thanks for this (and thanks for the hugs from other mamas!). I have a question... what am I supposed to think when on one hand, my son has many asd behaviors, and on the other hand sometimes he seems NT? I'll be honest, he has many red flags (rocking, toe walking, the speech issues, everything else I have mentioned in this thread etc). But he has started bringing us things this last week, just now he brought me a toy money and a little shovel. The shovel is about the size of a spoon and I think he thinks it's a spoon because he put it to my mouth like he was feeding me. He also likes playing peek-a-boo and is super lovable. Am I just grasping at straws?? I go from being in total denial to being totally convinced he has asd. I need a reality check- can kids with asd bring things to show parents and play peek-a-boo? The EI lady said they don't. I told her he doesn't bring things because he didn't until, literally, yesterday. I just don't know what to think.

Like FarmerBeth said, ASD is a spectrum, so some children are more severely affected, and some are less affected.  It's not an all-or-nothing diagnosis.  I think of autism as a learning disability; it doesn't mean you can't learn, it's just harder to learn and it takes longer.  Early interventions and therapies do work to teach children new skills.  So just because they will learn to talk and take care of themselves, doesn't mean they weren't delayed in the first place, and it took extra work to get there. 

My 3yo DS has a lot of traits of Asperger's, but it seems to be mild so right now it's a game of wait-and-see what the future brings.  He is not clinically delayed in any area, so he doesn't qualify for any therapies.  He is quirky and a little bit different.  I think by kindergarten we will see whether or not he is socially delayed or having trouble in school.  I know almost everyone is opposed to the wait-and-see approach, but I'm OK with it for now for DS, because he isn't particularly delayed, and doesn't seem to need any extra help at this point. 

[JFTB1177]

Originally Posted by FarmerBeth 

It seems to me having worked with children as a teacher's aid and in a special needs preschool, that some kids with ASD do start doing things like bringing toys up to the parents and teachers and some don't.  Same with gesturing, approaching people, playing imaginatively with toys, etc.  It's a spectrum disorder, so I think it's pretty hard to generalize about stuff like that - there's too much range.

Thanks Farmerbeth- this is what I needed to know! I just don't want to have any false hope.
 

[Emmeline II]

Quote:

Originally Posted by JFTB1177 

Thanks Farmerbeth- this is what I needed to know! I just don't want to have any false hope.

Well, I wouldn't consider it false hope in that it's great that he is improving in that area . He's soooo young and you are getting started early on interventions which is great...labels at this age are fluid as there is such a wide range of development in all children. Ds' DP wouldn't give a definitive diagnosis for Asperger's for ds even at 6y11mo because he was still at an age where his "most Asperger's" symptoms may improve with maturity.

[alestrange]

The dev ped didn't do much different - but our son was literally a PERFECT child when he saw him. He didn't throw a single tantrum, pointed, did his puzzles, engaged the ped in an activity - everything that's considered NOT a marker. The clinical psych was full of shit - pardon my french - but I just don't have much faith in her. She gave him puzzles and games - his favorite thing, then took it away even before he was done (why I don't know) and tried to transition to something much less intriguing to him. He got ticked and started crying. She took that as a sign. Maybe it is, but if you're feeding me cookies and then take them away and give me an apple, I'm going to get pissed too! Don't get me wrong. Do I think my child is on the spectrum? Yes. And as crappy as that made me feel at the beginning - I'll be honest, I felt cheated in that all these other people got perfectly "healthy" kids and mine wasn't. It's probably not a PC thing to say, but I'm sure most or all of us think it at some point but just don't say it. But I've embraced all the awesome, wonderful qualities that he has and I know - I KNOW - that with a few years in his early intervention program and his new school, he will be just like all the other kids when he started kindergarten. My husband and I have been working our tails off with him. We're not trying to force him into social events, but we are slowly taking him to more and more places where there will be a lot of unknown people. We went to a 1 y/o's bday party today and he pretty much stayed to himself - played with the dogs and said hi to some of the kids and babies. But he doesn't want to engage with unknown adults and that's going to take time.

I 100% agree with FarmerBeth about even kids on the spectrum engaging you in play and bringing you things. I am FAR from being an expert on any of this - just my own personal experiences with my one child. People like FarmerBeth that have exposure to many more kids like ours are super helpful.

As far as the outgrowing things by 4 y/o - I was referring to the social anxiety. I'm not sure about the headbanging or rocking. My son literally just stopped with the headbanging one day. I guess he realized he was only hurting himself!

Start the EI start it start it start it - it can't hurt. That's the way I look at all the services my son is getting!