Afraid UPDATE: Hyperlexia

[bignerpie]

I am trying to determine if I'm overreacting or not, and I need some outside opinions. Here's the background:

I have an almost 3 year old son. He's my first, and I don't have much experience with other children, and no experience with toddler boys. Everyone loves my son. Everyone says he is so well-behaved and smart and ahead for his age. For the most part, he is, but he acts a lot differently at home than in public or with other people.

He's mostly non-verbal. He throws ridiculous temper tantrums that are impossible to wait out. My theory was always to ignore them, but I just can't. He will always outlast me. I can only stop them by picking him up and hugging and rocking him. He spits constantly. I have tried to tell him no spitting, to get him to spit only in the sink, but he doesn't understand what I tell him. He just laughs at me and  continues to spit on the floor. He is OBSESSED with anything electrical- lights/flashlights, plugs, cords, small appliances, etc. He has to have things exactly the same and in a certain order. He will only wear one pair of shoes. If I try to put a different pair on him,  he starts screaming and banging his head on the floor. If a toy or whatever doesn't do what he wants it to do, it's the same thing. I did not expect him to never have tantrums, but I don't know if the extent of these tantrums are normal or not.

I broke down and contacted Birth to Three (Early Intervention) and had an initial evaluation on Friday. He is way behind on communication, only getting 10/60 points, but did very well in all the other areas. I called them because I was frustrated. I thought that maybe I could communicate better with him, it would make things easier. When I told a few close relatives about the evaluation, they all said I was overreacting. I said that I don't want to look back in a few years and wish I would have done something. He only has a couple of months to qualify for EI, and I figured it wouldn't hurt to call. We have an evaluation with the speech therapist next Thursday. 

The one thing that scares me the most, I haven't been able to say, not even to my husband. I read the red flags/symptoms of autism, and I get more and more concerned. I just don't know if I can handle it. I haven't taken him for WBVs since he was a year old, so I feel like a bad mom now. Maybe I should have, and the doctor would have noticed symptoms and blah blah blah. I'm playing the blame game with myself. 

In a way, I almost want a label just so people understand what I'm dealing with. It's so hard, and I feel like it's a lot harder than it should be. I get upset when people tell me I'm overreacting because it makes me feel like this is normal and I just can't handle it. Maybe if I was a better mom, things wouldn't be so hard. 

But I really just want a normal, healthy little boy.

Maybe I just needed to vent. Like I said, he is my first, and I'm not around other kids. Maybe what he does is perfectly normal. I know that "normal" is a spectrum, too. I guess all I can do now is wait for the speech therapist and see what she says.

Edited by bignerpie - 1/18/12 at 10:16am

[Emmeline II]

Originally Posted by bignerpie 
I broke down and contacted Birth to Three (Early Intervention) and had an initial evaluation on Friday. He is way behind on communication, only getting 10/60 points, but did very well in all the other areas. I called them because I was frustrated. I thought that maybe I could communicate better with him, it would make things easier. When I told a few close relatives about the evaluation, they all said I was overreacting. I said that I don't want to look back in a few years and wish I would have done something. He only has a couple of months to qualify for EI, and I figured it wouldn't hurt to call. We have an evaluation with the speech therapist next Thursday. 

The one thing that scares me the most, I haven't been able to say, not even to my husband. I read the red flags/symptoms of autism, and I get more and more concerned. I just don't know if I can handle it. I haven't taken him for WBVs since he was a year old, so I feel like a bad mom now. Maybe I should have, and the doctor would have noticed symptoms and blah blah blah. I'm playing the blame game with myself. 

 How is it overreacting to get an evaluation ? the point of an evaluation is to evaluate the need for services; and considering he is only scoring low on one part of the evaluation I doubt a general ped would have seen any flags at a WBV--most moms seem to be told that they are a nervous first time mom and/or children develop at different rates, let's wait and see. In any case, mom knows...

My ds had a "reputation" for being badly behaved and those people did not see the worst of his behavior, the "I'm being murdered and fighting for my life" tantrums he would have for nearly an hour.

In a way, I almost want a label just so people understand what I'm dealing with. It's so hard, and I feel like it's a lot harder than it should be. I get upset when people tell me I'm overreacting because it makes me feel like this is normal and I just can't handle it.

  My second child proved to me that I didn't cause ds' problems. They both have the same environment but ds has "issues" and dd seems NT. When people implied that it was us, I could point to dd and say "then how do you explain her?"

Your son is still very young and there are a lot of things that could be going on--you should get some good information from the ST eval.

I would also get on the appointment list at a clinic like this as it can take 9-12 months to get an appointment, but the thorough eval is worth it..

Edited by Emmeline II - 11/4/11 at 4:26am

[RiverTam]

Breathe. Just breathe.

You're getting an evaluation around the time that many people get an evaluation. Unless the kid is not hitting the baby milestones, most people won't catch an ASD earlier than sometime after 2.  The evaluations all ask about regression or developmental plateaus that occur between 2 and 3 because that's when an ASD is generally apparent. You're right on top of the situation. I didn't start the evaluation process for my HFA child until he wa 5 1/2 and having behavior problems at school. 

You're not over-reacting. Your relatives aren't the mom. They don't see this kid every day, day in and day out. They also don't see his behavior at home. Your judgment is based on more information.  

My son at age 9 has had 3 years of language therapy, including social skills work. He is in a mainstream classroom except for speech twice a week. He has friends and does sports. He is happy. He gets good grades. He is a great kid. I wouldn't trade him for the world. (That doesn't mean it's been easy.)

[Kamiro]

I waited until after my child was 6 to get the evaluation and kick myself in the butt for waiting so long to by listening to family and, even my beloved husband.

At 3 I definitely had the same feelings you had, and my child was doing much the same thing it sounds like yours is doing.

We didn't vax, offered nutritious food, co slept, baby carried --------the whole 9 yards.

My child is still autistic, and has a few other things that make a special needs child.

Every day is a learning experience.

I wouldn't trade this child for the world or imagine things any different.

I will never have to worry about said child telling a lie. They are honest to a fault.

Tantrums still come, melt downs - but now they are just different than when they were 3.

Child will make 'walking motions' with fingers to let me know they need a 'break' or will have a meltdown many times. Getting better with age.

Life isn't easy, but it isn't bad. I wish I would have done the eval earlier. It would have saved a lot of arguments, a lot of hurt feelings, and a lot of "I'm a failure" self talk when the judgment came.

Like you, every one assumed it must be me or my child rearing tactics, and when I sought help I was 'over reacting'...Well, guess what - now I know and it has been so validating as a mom, and makes me look at my child with new understanding and sympathy. Hugs.

[crunchy_mommy]

Taking DS to WBV's was the reason we waited so long to call Early Intervention. The doc kept assuring us everything was fine & normal.

Also, we didn't tell anyone in real life that DS is in EI (well, a couple of very close friends know, but only people who I knew wouldn't judge him, or me). None of his aunts/uncles/grandparents/etc. know. So don't feel like you need to tell people -- it can be something you just keep to yourself, if the people you tell can't support you.

I understand a lot of what you seem to be feeling, I've felt much of the same. I hope that the speech therapist can help or shed some insight. My DS's problems are different but some of my concerns are the same. This is a good place to vent or get support -- at least, it's been very good for me!

[RJ11]

I just wanted to say I can relate to much of what you are saying. I've been through so much guilt and anger and denial! My son started speech and OT right before turning 4 and I wish I had started the process much earlier but his Dr. and my husband even kept telling me all was fine but I felt something was off. He was also my first and I didn't know how a toddler boy was supposed to behave. Also many people kept telling me that boys talk late. I finally took him myself for private evaluations and got the ball rolling. I decided to keep his therapies quiet more because I didn't want people making judgements or jumping to any dx. He is 5 now and still has no official dx (Dept of Ed listed him under "other" for now) but we suspect AS with mild ADHD. Some days I still yearn for a "normal" son but for the most part I have accepted the situation and even have a sense of humor about his quirks and obsessions. Just know you will feel better with time!!! My son is so unique and amazing and happy - as long as he's making the rules that is. ;) Best of luck.

[khaoskat]

The only thing an WBV may have caught earlier would be the lack of language skills and potentially done referrals earlier.  But, then again, maybe not.  Most Ped's wont do anything about language delays until at age 2 they do not have 5 two word phrases...

I will say that my 2nd child was totally nonverbal.  We didn't get any services started until he was 2 years of age, then we got double whammy services (private speech and early intervention as well).  At age of 26 months he was on an 8-14 month language level for expressive.

What you are describing was my son to a T on many levels..he wouldn't spit though, he would bite, especially when he got frustrated. His behaviors were a direct result of his lack of communication, he didn't have any way to communicate how he was feeling, what he wanted, etc.

While you are waiting for all the intervention stuff, and you most likely will qualify solely on the basis of speech delay, I would start working on teaching your child signs.  It will start to give him a means of communication with you, even if it is simple one world signs (like eat, drink, potty, yes, no, etc).  You can work up to more complicated words, to help express feelings, once he starts to get the simple signs.

Just keep repeating them all the time when you are asking or saying the words.  Also, make sure when you talk, that he can clearly see your mouth and face, and over exaggerate your talking mouth movements.  He will get the visual cues on how to do things...

I am now going through it with a second child, my 4th and youngest.  But we already have early intervention involved because he has/had swallow problems, FTT, GERD and was being monitored to ensure he was remaining developmentally on track.  Right now, he is on target if not ahead on all but his speech.

[Nature]

You're at the very beginning.. stop for a moment and try to take some breaths. Remember that he is your son that you love now, and nothing will change that. A diagnosis won't make it easier to be his mother, or make unsupportive people suddenly supportive.

As a mother with autism, raising 5 children... 3 on the autism spectrum.. I promise you that in time you'll be okay. Do I still wish for normal? Yep. I've found you can indeed miss something you've never had. I want the normal I see in movies and books. The normal that people talk about.  In fact, on our whiteboard in the living room is a little inside joke my 13 year old with Asperger's wrote, in Facebook status style "What's on your mind?"....  "Waiting for life to be normal." then underneath it says currently "63 people have liked this post."  ... when things get stressful, and any of us feel that "Gosh why can't this family just be normal!!!!???" feeling.. we go to the board and add another number to the "likes."  Its our way of saying at this moment.. things stink!  And our look back at how we have overcome so many obstacles.

Take it one day at a time. If it helps to validate your experiences, your sons behavior sounds very familiar. If you'd like to take a look back through my posts over the years you can literally read my journey of diagnosis for all of my children right here on MDC and in this forum. If there is one place you can find a shoulder and someone to say they've been there and they support you, this is it.

Be gentle on yourself and know that all us parents go through those emotions sometimes.

[bignerpie]

Thank you all for the replies. I am feeling much better about my situation. I really expected to get negative feedback here, too. I guess because I'm so used to hearing it. 

I'm not going to jump to any diagnoses myself, but I have been reading your replies and other posts on this forum, and I see a lot of similarities with my son. He also has an obsession with fans and things that spin. In fact, he has his very own fan that he plays with. Yesterday, we were at a store with very high ceilings with fans, and he screamed and threw a fit because he wanted the fan on the ceiling. Someone mentioned in a post that their child could swing for hours. So does mine, literally for hours at a time. I've just gotten confirmation that there is something up that needs to be investigated.

My original post was the culmination of many months of frustration, and it was all of my negative emotions. I know I don't have to tell you all that I love my son, and I will love him no matter what. I think he is a funny, charming, intelligent little boy. It just seems like lately we've been having a lot of bad days, and that's what prompted my post.

I'll update again after we meet with the speech therapist. Thanks again for the replies. You have all helped me so much already!

[bignerpie]

Update-

I had an evaluation with the developmental specialist today. She recommended that we get an evaluation done by an occupational therapist and recommended the book, The Out of Sync Child Has Fun. She thinks my son might have some sensory issues and needs more stimulation.

The person that did the initial evaluation thought he would qualify based on his speech delay, but this lady doesn't think it's that far behind. He would need to have a 40% delay to qualify on speech alone, and she thinks he's only about 25% delayed. However, based on his behavioral issues (I can't remember what category they fall in), she thinks he will still qualify for the program, and that's why she recommended the occupational therapist. Specifically, he has pretty extreme sleep disturbances and he is unable to calm himself down during a tantrum. When I say extreme sleep disturbances, I mean that he will only sleep a total of 7-9 hours a day, and his "bed time" ranges from 11pm to 6am. It's different every night. One night, it might be 11pm, then 4am the next night, then 2am, then 6am, etc. No matter what I do, I can't change it, and yes, I have tried everything I can think of for 2 years except medication. I have blamed myself thinking that I am not consistent enough or not doing the right thing, but I've reached the point where I feel like there is a bigger issue at hand.

At this point, I'm not sure how I feel. I actually read the sample of The Out of Sync Child on my kindle, and I didn't have that "This is so my child!" reaction. What concerns me is this- I feel like I'm constantly walking on eggshells with him. I will ask him, "Would you like some juice?" and he will have a meltdown. He will scream no repeatedly and bang his head off the floor. Sometimes he will do that if I only look at him! I feel like no matter what I do, I can't keep him happy. The only way I could is to neglect everything else and spend 100% of my energy and attention on him.

We still have the speech eval on Thursday, and then we have to set up an appointment with an occupational therapist, then we have the big meeting on the 22nd. I guess this thread is becoming my journey through EI .

[SpottedFoxx]

Ohhh, that tantrum sounds so familiar.  My son (who has SPD) would do that but it's not a sensory response but a frustration response due to a lack of language.  The best thing I was told to do was to give him skills to express himself effectively.  So when he banged his head on the floor, (as much as it killed me) I'd ignore him.  He never hurt himself.  We taught sign language and we'd talk about way to let us know what he wanted properly.  We also had to figure out new ways of doing things.  Instead of asking if he wants juice, pick him up, take him to the fridge and ask him if can show you what he'd like to drink/eat.  Giving choices always works wonders with my son as he feels he has control.

Good luck!

[bignerpie]

We had the speech evaluation today. The speech therapist said that he does have about a 25% delay in speech, but she feels that his major issues are social/emotional. She commented on the fact that he didn't interact with her very much. He also had a "zoning out" period that she was able to observe. She thinks an occupational therapist would be more helpful. She said he exhibits "atypical behaviors" and referred to him as "quirky." 

Since we haven't been to a WBV for a while, she recommended that we take him to the pediatrician. She said the "zoning out" should be evaluated to make sure he is not having seizures. I am starting to forget now what all we discussed. We've been through so much in the last few weeks that I'm having a hard time keeping things straight. I feel very overwhelmed. 

[Linda on the move]

Another book for you to check out:

Quirky Kids http://www.amazon.com/Quirky-Kids-Understanding-Helping-Doesnt/dp/0345451430

It's about the possibilities, the dx's. the specialist, the ages and stages, etc. It covers several different, closely related dx's (2 of which my DD has). I find this book to be a really sweet read -- it feels like a hug from a friend who has been there done that. 

My DD is on the autism spectrum and is now 15 and doing great. Really great. Things are OK, but OK is a different place that we thought it would be. I used to have this idea in my head what things needed to be like to be OK, and I found out that OK is a lot bigger than I thought it was.

There's a lot of not-knowing on this path of being the mom of a special needs kid. Right now you have tons of questions, and gradually you will get answers about many of those, but the answers often lead to more questions. Making peace with the not knowing has been the hardest part of this for me.

Keeping doing what you are doing -- making appointments, making followup appointments, go to therapies, read books.

But also, and this is the piece of advice I wish I had heard when my DD was small, take a little time to enjoy him. Take some pictures. Look at him while he sleeps and enjoy his sweetness. Take a little time each day and just be in the present with him. I regret that I spent so much time freaking out that I missed chunks of my DD's life.

[crunchy_mommy]

Originally Posted by Linda on the move 

But also, and this is the piece of advice I wish I had heard when my DD was small, take a little time to enjoy him. Take some pictures. Look at him while he sleeps and enjoy his sweetness. Take a little time each day and just be in the present with him. I regret that I spent so much time freaking out that I missed chunks of my DD's life.

This. Especially right now, while your head is swimming. Right down everything you need to remember, make a long to-do list, and then give yourself a day or two off, a couple of days to just really enjoy your child and momentarily forget about diagnoses and therapies and appointments.

[Piglet68]

So much of what you are going through is familiar to many of us who have gone through it. So no that you are not alone!

I doubt the WBV would have made any difference. Despite DS's serious behavioural issues nobody recognized it for what it was, even though we sought help for him. Things are getting better but it is very common for young kids to be misdiagnosed. 

It is also normal to go through a grieving period. Don't feel guilty about that. My husband went through it when DS got his official diagnosis. I think I had known for so long and been through so much that it was a total relief for me - finally I was not dealing with this alone with no idea of what to do. 

Getting help changes everything and now I'm feeling so positive for DS. Yes, it's challenging, and yes I often wish for "normal" (DD is likely on the spectrum too). I've even cried over it, being around friends whose kids just seem so damned "easy" compared to mine and my life. But honestly there are many benefits to this, not least of which is I have lost any shred of judgemental-ness I may have had towards other mums dealing with difficult kids. And I have found some really wonderful mamas in the community of those of us with ASD kids. 

Don't feel bad about being scared or any other negative thoughts. They are normal and I promise you that you will get through this and feel much better. hugs!

[pumpkingirl71]

Sending hugs.  It is so hard and sadly common that relatives are not supportive.  But you are fighting for your son!

[Thing1Thing2]

Originally Posted by bignerpie 

The only way I could is to neglect everything else and spend 100% of my energy and attention on him.

I feel like this too. My DS hasn't had an official diagnosis yet. There was a period of time where I said "forget the house, forget everyone and everything else" and I spent all of my time with him. He was much better, but I wasn't doing so well. It's impossible to keep up with his need for attention, so he needs more help. (Or I need help). My family still doesn't understand. They have this picture in the back of their minds of me being an over reactive mom. I think the reason they are like this is because ever since his birth he has had one problem or another. First it was reflux, then allergies, then sensory issues. Since their child was NT, they don't understand how one child could have so many problems and begin to blame it on the "overreactive" mom.

I have kept this mostly quiet among my family. They did happen to ask why he was going to so many appointments and I mentioned we are getting him evaluated. They fluffed it off as if it was nonsense, so I will not give them the benefit of knowing anything else - even if he gets a diagnosis.

Hope your appointments go well. I am in the same point of the journey as you right now.

[Piglet68]

There was a period of time where I said "forget the house, forget everyone and everything else" and I spent all of my time with him. He was much better, but I wasn't doing so well. It's impossible to keep up with his need for attention, so he needs more help.

One of the things I have found most wonderful about entering this "world" of autism is finding there are people out there who know exactly how to deal with kids like my son. There's a wonderful guy here who runs a social skills club. He comes from a family with many on the spectrum and he just "gets" these kids. My son took to him immediately the day they first met, and now he goes on outings with other boys on the spectrum. There are also Special Ed Assistants and respite caregivers who understand our kids, don't judge them, don't freak out at their behaviours, and help them deal with the behaviours, give them useful tools to help them. As a parent, you feel like you are giving 110% to these kids, and that is not a sustainable situation for anybody. When I get burnt out I am not good for DS, so building up this team of people is critical for everybody. 

[bignerpie]

Originally Posted by Linda on the move 

Another book for you to check out:

Quirky Kids http://www.amazon.com/Quirky-Kids-Understanding-Helping-Doesnt/dp/0345451430

Thank you for this recommendation!!! What I've read so far, that is my son. One of the first stories is about a boy obsessed with vacuums. Well, we bought my son a vacuum for his first Christmas. Anyone's house that we go to, he knows exactly where their vacuum is, and he will happily play with that the whole time we're there, even if there are other kids around.

I finally had the conversation with my husband, and I used the Quirky Kids book as a conversation starter. I told him that I started reading this book, and it really describes our son. He came right out with, "What, you mean like autism?" The conversation actually went better than I thought it would. I expected a lot of resistance from him. He's not convinced by any means, but is ok with getting evaluations/testing done. He has a family history of a severe mental illness, so it is a difficult subject for him.

I started writing down behaviors that concern me. It's already helping my sanity by not having to remember all of these things. But it is just convincing me more and more that he is somewhere on the spectrum. I'm waiting on insurance stuff to get sorted out, but I found a place to go for a thorough evaluation (http://www.wvukids.com/healthcare-services/klingberg-center.html, for anyone in my general area that might be looking for this info), and I'm going to call and see what kind of wait list they might have. 

I'm not sure where to start, though. Is EI my starting point in terms of a diagnosis, or should I be working with a pediatrician on that?

And another question for you knowledgeable ladies: What constitutes a loss of speech? For example, my son used to say, "Turn the lights on" but now he won't say it at all, and if I say it to him, he looks at me blankly. But he is learning and saying new phrases. So overall, his speech is expanding, but certain phrases are disappearing. Is that normal, or is that something I should mention to the doctors/therapists/evaluators?

And about EI.... if they suspect ASD, will they come right out and say it?

[crunchy_mommy]

Originally Posted by bignerpie 


Thank you for this recommendation!!! What I've read so far, that is my son. One of the first stories is about a boy obsessed with vacuums. Well, we bought my son a vacuum for his first Christmas. Anyone's house that we go to, he knows exactly where their vacuum is, and he will happily play with that the whole time we're there, even if there are other kids around.

I finally had the conversation with my husband, and I used the Quirky Kids book as a conversation starter. I told him that I started reading this book, and it really describes our son. He came right out with, "What, you mean like autism?" The conversation actually went better than I thought it would. I expected a lot of resistance from him. He's not convinced by any means, but is ok with getting evaluations/testing done. He has a family history of a severe mental illness, so it is a difficult subject for him.

This is my son too. I swear he makes messes on purpose just so he can vacuum them up. He also makes any kind of stick etc. into a vacuum and makes the vacuum noise... it was the first thing he really played, & for awhile it was the only thing. He fit the Quirky Kids book really really well. However, he does not have autism... he's just... quirky and sensitive, I guess! So I don't know if that's any consolation, that even if he seems to fit it perfectly, he might not have it. When we were going through evaluations I felt certain they'd suspect him to be on the spectrum, but now, with distance & time (and after resolving some of his issues with therapy), I don't think he is at all, or if he is, it's the very very high-functioning end. He just had some delays.

Originally Posted by bignerpie 

I'm not sure where to start, though. Is EI my starting point in terms of a diagnosis, or should I be working with a pediatrician on that?

I don't think EI is really designed to diagnose kids... they do put a diagnostic label on them when they provide services, but I think it's a generic diagnosis or a diagnosis from the child's doctor? Someone can correct me if I'm wrong. With my DS, they just used "mixed developmental delay" (his delays are social/emotional). We haven't gotten a real diagnosis for DS and I don't really plan to, as long as he continues to improve, but I am thinking a developmental pedi might be a good place to start?

Originally Posted by bignerpie 

And another question for you knowledgeable ladies: What constitutes a loss of speech? For example, my son used to say, "Turn the lights on" but now he won't say it at all, and if I say it to him, he looks at me blankly. But he is learning and saying new phrases. So overall, his speech is expanding, but certain phrases are disappearing. Is that normal, or is that something I should mention to the doctors/therapists/evaluators?

I think it's normal to lose phrases... even adults go through phases of saying certain words/phrases and then dropping them completely. If his overall speech is expanding, then I don't think it's a loss of speech, I'd think that would be more if he was losing more words/phrases than he was gaining. I might be a little concerned that he doesn't seem to comprehend "turn the lights on" anymore though... maybe loss of receptive language??? And usually when my DS loses a word or phrase, he replaces it with something else... like maybe instead of "Turn the lights on" he'd start saying "Switch on the lights" or something similar. I don't think he's ever completely lost the ability to express or understand a concept, if that makes sense?

Originally Posted by bignerpie 

And about EI.... if they suspect ASD, will they come right out and say it?

I doubt it, but it probably depends on the workers you get. (And I really only have my own experience to refer to with this, so I could be wrong...)