Afraid UPDATE: Hyperlexia - Page 2

[Emmeline II]

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?

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?

I think EI can be a good starting point, but their interests are different than yours and their resources (and expertise) is limited. As I said before, a I'd get on the appointment list with a developmental-behavioral ped since it can take months to get in; making an appointment with your ped to discuss this could be helpful just to be able to say you've done it, though they often take a "wait and see" approach so it may ultimately not be that useful to you. We never dealt with EI, but we did have an OT that delicately suggested ds be evaluated for Asperger's, which we hadn't really considered at that point and ds' psychiatrist didn't seem concerned about it, but the developmental-behavioral ped later said that she could see why we were concerned about Asperger's.

I'd take note of everything that concerns you about your son's development and mention it to evaluators; it can be helpful to arrange the information into a bullet list, perhaps according to areas of development (speech, fine motor control, etc...). Don't be afraid to mention your concerns, if the provider is dismissive it will tell you something about them, if the provider isn't concerned but takes you seriously, they should be able to explain why to your satisfaction.
 

Edited by Emmeline II - 11/14/11 at 9:33am

[crunchy_mommy]

Originally Posted by Emmeline II 


I'd take note of everything that concerns you about your son's development and mention it to evaluators; it can be helpful to arrange the information into a bullet list, perhaps according to areas of development (speech, fine motor control, etc...).

 

And make copies of your list so you can just hand it over -- we did this & it gave us much more time to actually discuss everything since they weren't busy trying to copy over our list and scribble down everything we were saying!

[bignerpie]

Originally Posted by crunchy_mommy 


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.
 

OMG, I have said the exact same thing about my son! He does the same thing, too, making sticks into vacuums. That does make me feel a lot better. 

Originally Posted by crunchy_mommy 


And make copies of your list so you can just hand it over -- we did this & it gave us much more time to actually discuss everything since they weren't busy trying to copy over our list and scribble down everything we were saying!

Good advice. Thanks!

[Emmeline II]

Originally Posted by crunchy_mommy 


And make copies of your list so you can just hand it over -- we did this & it gave us much more time to actually discuss everything since they weren't busy trying to copy over our list and scribble down everything we were saying!

Yes, I always have copies.

[bignerpie]

The speech therapist just e-mailed me her full evaluation. Her diagnostic impressions and recommendations:

"Calvin is a sweet 33 month old boy who is demonstrating a significant delay in his speech and language skills (more than 40%) and atypical adaptive and social-emotional skills.   A full hearing evaluation is recommended to rule out hearing loss."

I feel like a complete failure as a mom. 

[queencarr]

Hang in there mama. You ARE NOT a failure--you observed that something was "off", located who could help you learn about it, and are working on helping him get closer to age appropriate. That sounds like a winner mom in my book. My oldest is now 13 and was in speech through ECI, then school and private until he was 7 (he started at <1). He also had 2 rounds of OT for about 4-5 yr total, too. I *lived* in therapy offices lol The therapist he had the longest is now my boss a few people up-the experience made me change careers and I'm now an SLP at his suggestion all those years ago !! There is a whole group with both training/education and some sort of innate skills/sense of awareness working with these kiddos. As a PP suggested, be sure to focus on the normal bits-splashing in the bath, the way he looks when he sleeps, the joy on his face when he vacuums:) as he gets older, embrace his quirks:). DS1 has a few particular obsessions, such as math in general but especially pi. Our family and friends takes great joy in indulging this--we seek out all things pi for him as a running joke and he loves it. He is likely very HF aspergers but I never had him dx as I have good insurance and didn't need it. If it help you to know for down the road, he is an almost straight A student with a good group of friends, is in scouts, and loves to dance and act on stage! (and he gets lead roles!) from a kid who had 12 words at 22 months including animal sounds, and motor skills concerns that predicted that he would walk but probably not really run--he dances and sings on stage. He is fun to hang around and just talk to.

Anyway, hang in there and just take some time off when it gets overwhelming. A few days off of this quest are just fine.

[canarymom]

I'm new and this is my very first post. Firstly big hugs to you. You are your child's best advocate and you must question everything you hear from all professionals, not to say they will not be helpful, but a professional opinion is just that...an opinion and you mommy instinct trumps any professional opion. I started this journey 10 months ago. The first thing we were told to do was contact EI and have hearing evaluated. My sons hearing is absolutely fine, although the ENT suggested tubes to see if it would help. It made no sense at all to me and I'm so glad we didn't. As I learn more about ASD, there are some biomedical components to consider and the anesthesia would likely not have been good for him. Not sure, but until I am confident, my child will not have any exposures to heavy pharmaceuticals,etc. Including vaccines. Again, I'm just not sure yet, so until I am sure these are no threats, I won't expose him. Hearing evaluation is a good idea, but do you suspect hearing loss? Or does it seem more selective? It sounds like he's had a regression in speech, so again I'd question hearing loss unless there was a significant event that happened that could have caused such loss.
My child is very young. He's just turned 2 and I still feel afraid. I feel horrified, quite honestly, and saddened. I have to remember what so many moms here have said and that is to stop, play and watch his beautiful face. We took a day off from therapies last week and took him to the zoo. It was his first trip there and he really seemed to love it. It's made me question all the hours of therapy he is already attending and made me think we ought to work in a zoo trip weekly. I need to take this time to enoy his toddler years. I have an older child too, so I know how quickly this time will pass.
Back to the ASD thing though. I had so many people telling me to relax....how could I? When something goes on with one of my children, relaxing is just not possible for me, so give yourself permission to grieve, to worry, to be afraid. Don't feel guilty about that. Try to find room for breathing too, and laughter, and relaxing, if you can. Do what works for you. If you exercise, stay on that course. That's one thing I do wish amongst all of this, I wish I had taken better care of myself as I've grown fairly fatigued and these months of stress have taken a toll, but I could not have made a conscious decision to stop looking for answers, to stop research, to stop worrying. I've given myself a year basically to find our new path. By the way, my child has no dx.
Ill end by saying the first month we lost eye contact and his socialization or lack of became extreme, we changed his diet. We cut out gluten and dairy and within a month a lot changed. He was responding to us again. He handed a stranger a toy. We still have a lot of work and therapy ahead of us, but that was the best place to start. There is something to the diet thing and I personally believe everyone going through this should start with some diet changes. Some kids respond drastically to diet. I'd add a good probiotic too. While it's true and I've heard some zoning could be seizure related, I hear more often that it's tied with gut flora and yeast overgrowth. A nutritional panel can help determine if there are any flora issues and I'd much rather put my child through a urine test or blood draw than an EEG or MRI. We did the MRI although I knew in my mommy gut that we hadn't had anything traumatic happen. I knew we had regression. I'm not so sure his body was able to process the anesthesia like a healthy body. I wish I had not listened to that professional. I wish I had listened to my mommy gut, at least until we tried other non-med things first.
One other thing to add, if you are using Tylenol products, research those a lot. Tylenol is rough on the immune system and is currently being linked to asthma. Not to mention all the recalls, so I'd avoid ibuprofen in general. Not picking on the brand actually...just the product.
Hugs to you and all other mammas in our shoes. Our children are beautiful. Our children are special. And our children can be helped.

[Fay]

Originally Posted by bignerpie 

I feel like a complete failure as a mom. 

Whoa, this is not a failure.  Speech therapists routinely recommend a hearing eval for every child with a speech delay.  It's actually a good thing to get the speech eval and hearing tests done early, because there's a lot that can be done to help your child.  You're doing everything right!!!

I know that reading through a report like that can be a punch in the gut.  Allow yourself time to grieve.  Once you swim across the ocean of grief, you will have more clarity.

Here's a blog article for parents beginning the process of evaluation and diagnosis -- the hearing test is one of the first things mentioned: http://blog.friendshipcircle.org/2011/10/11/diagnosis-autism-the-letter-i-wish-i-had-received/  You may also want to look at the book Play to Talk by MacDonald -- it's easy to read, evidence-based methods, and all based on attachment.  Most library systems have this book because it's so widely recommended by speech therapists and teachers.

Canarymom, welcome to Mothering!  I apologize for nitpicking, but you mentioned ibuprofen as the active ingredient in Tylenol, and this is incorrect.  Acetaminophen is the active ingredient in Tylenol that has been linked with liver problems, immune problems and asthma.  Ibuprofen is the active ingredient in Motrin & Advil.  Ibuprofen can cause bleeding in the stomach, so it should be given with food, but otherwise I think it's safer than acetaminophen.  

[beachcomber]

You're in a scary place right now and so many of us here remember just how you feel. I remember it almost too well. But one thing I want to say right now is this:

My DD was finally assessed and found to be at the high functioning end of the Autism Spectrum when she was 4 1/2 after a year of me searching for a diagnosis for her strange delays. She went straight into intensive EI therapies for a variety of delays and concerns. She made SO MUCH ground in that year of therapy! She's doing well now in kindergarten with an IEP and an educational aide to support her. She likes school. She has hobbies and loves to sing and is a much more social little girl than she was at 4 1/2.

Yes, it scared me to death to get the Autism label put on her. But it gave us tools and resources that have helped her so much. Having the label gets less scary. Most people who look at her have no idea, you know?

It will get better. I promise.

[Emmeline II]

Originally Posted by bignerpie 
"Calvin is a sweet 33 month old boy who is demonstrating a significant delay in his speech and language skills (more than 40%) and atypical adaptive and social-emotional skills.   A full hearing evaluation is recommended to rule out hearing loss."

I feel like a complete failure as a mom. 

Oddly enough, having our concerns confirmed tends to reinforce the belief that we should have figured it out earlier -- but the reality is your ds is young enough that his age is still given months .  There are a lot of things that can affect speech and language development, a hearing eval is just an "easy" way to whittle down the possibilities.

I've found that I feel a bit "overwhelmed" whenever we get the results of an evaluation, though we haven't received any results that were unexpected.

Edited by Emmeline II - 11/17/11 at 7:17am

[khaoskat]

At your well baby visit, request your pediatrician refer you for a sleep study and also to do a blood draw through a lab for his iron levels and iron store levels.   The sleep study will help determine what some of the issues are with sleeping and bed time.  I know what helped a bit for us was melatonin, then we found out we had rls/plm and a course of iron helped that.

[canarymom]

Originally Posted by Fay 

Canarymom, welcome to Mothering!  I apologize for nitpicking, but you mentioned ibuprofen as the active ingredient in Tylenol, and this is incorrect.  Acetaminophen is the active ingredient in Tylenol that has been linked with liver problems, immune problems and asthma.  Ibuprofen is the active ingredient in Motrin & Advil.  Ibuprofen can cause bleeding in the stomach, so it should be given with food, but otherwise I think it's safer than acetaminophen.  

Whoops, I stand corrected. I guess in the early morning hours and in my passionate stance on the subject I mixed up my ingredient names. Thanks for correcting as it is important.

I additionally want to say I have turned vocal on the subject of early intervention and education due to something a friend told me several months into my journey. At 10 months of age she suspected failure to thrive in my child. She is a nurse. I had no idea anything was up...I just didn't see it at the time. If she had told me...I'm the kind of person who listens. I might have researched and made some changes based on my findings. Changes that might have resulted in a better outcome for my child, developmentally speaking. I will hardly remain quite on the causes of my child's condition and, more importantly, I will share what I learn about opportunities to help him and others like him, as well as the families.

To the OP, failure and blame are things you cannot put upon yourself. We are so commonly misinformed by people/professionals who are also misinformed. Trust your instincts, do your own research, do as much early, noninvasive preliminary testing as you can afford and mentally handle and then find a path that works for your family.

[bignerpie]

UPDATE: My son has had speech therapy, occupational therapy, and special instruction with EI for the past couple months. It has been a tremendous help! His tantrums are almost non-existent now, and his speech is really improving. Sleep is still a struggle, but we're on the right path.

My big reason for updating- yesterday, the SLP unofficially diagnosed my son with hyperlexia. One of his obsessions is letters and numbers. He has been able to identify letters for almost a year, and I've seen him identify numbers up to twenty. But with his speech delay (over 40%), it's hard to tell what he really knows. I don't know if I still believe he's on the spectrum, but hyperlexia definitely fits, whether it's co-existing with something else or not. I was reading at 3 years old, and after doing some research, I also fit the description of hyperlexia. So, I feel like we are headed in the right direction.

His 3rd birthday is in 2 weeks, so our EI journey is almost over. We do have testing with the school system scheduled for next month to see if he qualifies for special needs preschool, and I will continue to update. Thank you all so much for your support through this. 

[Lollybrat]

My son has hyperlexia along with autism.  We realized that he could read/spell soon after he turned 2, but he did not start talking until he was almost 3.  His private SLP and the EI team all recognized the hyperlexia.  He got his official medical diagnosis of autism a week after he turned 3, after a 5 month long diagnostic process.

Hyperlexia has been a wonderful tool in working with our son.  The written word remains DS's "native language" and for him, learning verbal language has been like an adult learning a difficult foreign language.  So we make full use of DS's obsession with the written word.  We have used written language to teach him everything from verbal language to sociall skills to potty training.  Our house is full of white boards, cue cards, social stories, homemade posters, etc.  I carry a small  notebook and stacks of index cards in my purse.   Sure, people gave me strange looks when I would start writing down directions for my 3 year old, but I didn't care because it worked.

DS is now 7.  He has been in special education services in the school district since a few weeks before he turned 3.  He was in special needs preschool for 2.5 years.  He has been in the autism classroom with partial mainstreaming since Kindergarten (he's now in 2nd). He is very bright academically, but continues to need a supportive and structured class environment. 

So I just wanted to tell you that hyperlexia is an amazing thing. It definately involves a unique learning style and if you learn to take advantage of that, you may find it to be a powerful teaching tool  that helps all of you.