First signs of autism...

[Peaceful Isle]

I have a very dear friend who has a baby girl about 18 months old. I have a son that just turned one. We have been friends since before their births. I have always considered her little girl very smart, and beautiful and love her to bits!! Lately, though, I have noticed some odd behavior from the little girl, and I am starting to get worried. I think she might be starting to show the first signs of autism. I need some advice from some mothers who have a lot more knowledge on this issue than me!!:confused:

These are the things I have noticed about this little girl:

1. She has lost many words she used to say, and now she just says the same sound, kinda sounding like a question. Weird.

2. She has meltdowns for no reason, arches her back, and bangs her head etc...

3. She does not like to be held, but has an obsession with feeling her mom's hair.

4. She slaps her hands together ( kinda wringing motion), and her jaw shakes when she melts down.

5. She was advanced in communication, talking, and was VERY smart, even more so than my son, but now my son is passing her up. She is regressing in her social skills.

6. She completely loses it in loud areas, or with a bunch of other kids. During these times, she can not be comforted.

7. My friend is an awesome, giving mom, and she always looks completely worn out.

 

I know kids are hard work, I have 4. I know kids have meltdowns etc.. I want to believe I am just overreacting and it all just fine.

 

I would love for someone to tell me this is normal, so I can stop worrying!!

Edited April 7, 2012 by mommyof4AZ

[DianeW88]

These can be signs of many problems, and the mother should have her child evaluated. However, the first thing I thought of (as a Peds nurse) was Rett Syndrome. Unfortunately, there is no cure for this disease. Also not saying that is what your friend's dd has...just that her symptoms warrant an evaluation by her pediatrician.

 

Here are some of those signs, which generally start becoming noticeable after age one:

 

Scientists generally describe four stages of Rett syndrome. Stage I, called early onset, typically begins between 6 and 18 months of age. This stage is often overlooked because symptoms of the disorder may be somewhat vague, and parents and doctors may not notice the subtle slowing of development at first. The infant may begin to show less eye contact and have reduced interest in toys. There may be delays in gross motor skills such as sitting or crawling. Hand-wringing and decreasing head growth may occur, but not enough to draw attention. This stage usually lasts for a few months but can continue for more than a year.

 

Stage II, or the rapid destructive stage, usually begins between ages 1 and 4 and may last for weeks or months. Its onset may be rapid or gradual as the child loses purposeful hand skills and spoken language. Characteristic hand movements such as wringing, washing, clapping, or tapping, as well as repeatedly moving the hands to the mouth often begin during this stage. The child may hold the hands clasped behind the back or held at the sides, with random touching, grasping, and releasing. The movements continue while the child is awake but disappear during sleep. Breathing irregularities such as episodes of apnea and hyperventilation may occur, although breathing usually improves during sleep. Some girls also display autistic-like symptoms such as loss of social interaction and communication. Walking may be unsteady and initiating motor movements can be difficult. Slowed head growth is usually noticed during this stage.

 

Stage III, or the plateau or pseudo-stationary stage, usually begins between ages 2 and 10 and can last for years. Apraxia, motor problems, and seizures are prominent during this stage. However, there may be improvement in behavior, with less irritability, crying, and autistic-like features. A girl in stage III may show more interest in her surroundings and her alertness, attention span, and communication skills may improve. Many girls remain in this stage for most of their lives.

 

Stage IV, or the late motor deterioration stage, can last for years or decades. Prominent features include reduced mobility, curvature of the spine (scoliosis) and muscle weakness, rigidity, spasticity, and increased muscle tone with abnormal posturing of an arm, leg, or top part of the body. Girls who were previously able to walk may stop walking. Cognition, communication, or hand skills generally do not decline in stage IV. Repetitive hand movements may decrease and eye gaze usually improves.

[momto2Cs]

I'm sorry. I wish I could just say that sounds completely normal, but it is ringing alarm bells. Can you talk to your friend about this? She needs to talk to her pediatrician.

 

There are so many things that can help with autism - dietary changes, routines, dry brushing and weighted vests, other sensory activities, etc.

 

I'll keep your friend and daughter in my prayers.

[thescrappyhomeschooler]

Has the girl's mom said anything to you about the loss of language or a change in her behavior? It does sound unusual, and she should probably begin discussing the problems with her child's doctor. Do you feel close enough to mention it to her?

[Peaceful Isle]

Thanks ladies. I feel the same way. Just a lot of red flags. :( I want to talk to my friend. I don't know what to say, without freaking her out. She is very sensitive.Their little girl is their world. They have already noticed her speech going downhill and are worried. :( I am pretty close to her, but I am still not sure how I should approach it.

My friend has mentioned the changes to me, and they are a little worried.

Edited April 7, 2012 by mommyof4AZ

[thescrappyhomeschooler]

If she brings it up again, ask her if she's addressed the problem with the ped. If not, suggest that she do that. I wouldn't tell her you think it could be autism or any other syndrome, but that you would be worried about it, too, and would check it out.

[Parrothead]

Thanks ladies. I feel the same way. Just a lot of red flags. :( I want to talk to my friend. I don't know what to say, without freaking her out. She is very sensitive.Their little girl is their world. They have already noticed her speech going downhill and are worried. :( I am pretty close to her, but I am still not sure how I should approach it.

My friend has mentioned the changes to me, and they are a little worried.

Something like, "Hey, I've been thinking about your daughter and the concerns you mentioned. I think it might be a good idea to get her evaluated. Why don't you call for an appointment now and I'll go with you if you want."

[stripe]

My friend has mentioned the changes to me, and they are a little worried.

I've found it helpful to have a discussion with a doctor and have a condition explained, even though it's made me unhappy that the child is not perfect.

[wapiti]

:iagree: she should speak with her ped.

 

The loss of language would concern me (and yet, it's very difficult for me to imagine because my kids all talked on the later side; only a few of them had a few words at 18 months). The rest of the behaviors would not worry me at that age. I might note that some behaviors can arise from the frustration of not being able to communicate (in our house, that would be head-banging tantrums). Sensory processing issues can exist in the absence of autism spectrum disorders.

[Night Elf]

If she brings it up again, ask her if she's addressed the problem with the ped. If not, suggest that she do that. I wouldn't tell her you think it could be autism or any other syndrome, but that you would be worried about it, too, and would check it out.

 

:iagree: If she mentions it again, I would tell her it might make her feel better to talk to the pediatrician about what is going on. Of course, it would be a good thing for the pedi to actually listen and not pat her on the head for being an overprotective mom. That happened to me for years.

[Peaceful Isle]

Sounds like a plan. I'll wait till after Easter to mention it to her. Like I said, the mom is Very sensitive. She has not had an easy life herself. She has cerebral palsy and has had many surgeries. She is an amazing person. I guess this is why I hate mentioning that their is anything wrong with her baby girl. I know it has to be done. That is reality. It just breaks my heart. She has never had it easy in life. :(

[SKL]

I agree that an evaluation is needed, and the sooner the better. If it's anything that can be helped with therapy or medical intervention, time may be of the essence.

[Corraleno]

These are the things I have noticed about this little girl:

1. She has lost many words she used to say, and now she just says the same sound, kinda sounding like a question. Weird.

2. She has meltdowns for no reason, arches her back, and bangs her head etc...

3. She does not like to be held, but has an obsession with feeling her mom's hair.

4. She slaps her hands together ( kinda wringing motion), and her jaw shakes when she melts down.

5. She was advanced in communication, talking, and was VERY smart, even more so than my son, but now my son is passing her up. She is regressing in her social skills.

6. She completely loses it in loud areas, or with a bunch of other kids. During these times, she can not be comforted.

This describes exactly what happened with my niece, and at the same age. I raised my concerns with my SIL, and she eventually asked the ped about it — but the ped knew nothing about autism and totally dismissed it. In fact, he told my SIL that the reason my niece wasn't talking or making eye contact was because she (SIL) was not paying enough attention to her and that if she would just read to her a lot, that would solve the problem. :glare: My niece was not properly diagnosed until she was 4, and they can never get those years back, when early intervention might have made a big difference.

 

Personally, I would do more than just casually mention your concerns and suggest that she talk to the ped; I would tell her that you're seriously concerned about her daughter and suggest she have her evaluated by a specialist. If it turns out to be nothing (which I highly doubt), the mom can stop worrying and wondering, and if this girl has autism, then the sooner she gets help the better. Not a day goes by that my SIL doesn't kick herself for not following up and getting my niece help sooner. :(

 

Jackie

[JFSinIL]

If there is a local Easter Seals, she can get a free or cheap evaluation from them. Or a developmental pediatrician could be helpful. Some kids have a seizure disorder that exhibits about 18 months - the abnormal activity is in the language processing part of the brain, and can lead to many of the symptoms you describe. Older kids (age 5 ) who got it were called Landau-Kleffner Syndrome. Younger kids (one of my fraternal twin boys) who started showing this at about age 18 months can be called Landau-Kleffner Syndrome Variant or LKSV. They also fit the criteria for PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specialized) which is a "nice" way of saying a kid has autism, just not the "classic" type. My kid has both the LKSV and PDD-NOS labels. It is often easier to just say "autism" as more folks have heard of that and, in this day and age, have or know a child on the spectrum!

 

An unmedicated overnight EEG can pick up if the child has LKSV - it is treatable (if the child responds) with anti-seizure meds, sometimes also short times of low-dose prednisone. But a lot depends on what doctor see the kid - many doctors either do NOT look for LKSV (I had two in a row tell me "of course he stares - he is autistic!" when it was treatable absence seizures) or try and treat the symptoms with whatever their "thing" is.

 

The first step is a thorough evaluation.

 

If the family is in or near California, call Dr. Michael Chez at Sutter Children's in Sacramento. He is THE expert (and treated all four of my kids for one thing or another). He left Illinois a few years back to be head of his dept. at Sutter. Our loss. He had, and probably still has, patients traveling from around the world to get in see him. It can take a while to get an appointment - worth having your friend call and describe what is going on and make an appointment. Seriously.

 

He is also one of the top doctors using the Ketogenic diet for severe cases that need it, btw. So he is not just a "throw meds at everything" doctor.

 

I might as well add - SillyAutismMan is 20 now, so he has been being treated for LKSV for 15 years now. Back in the day, hardly anyone knew to check the "autistic" kids for LKSV. SAM had one-hour, medicated EEGS from two different pediatric neurologists at ages 3 and 4. Neither found anything to treat (despite speech therapists etc. catching SAM having absence seizures.) It was from other parents that I heard of Chez...and had to wait seven months to get in!!!! SAM was FIVE before he FINALLY got the correct diagnosis and started treatment. Within weeks of starting meds, he stopped echoing what he said and began speaking spontaneous words, then sentences....he stopped staring through us.... it was (and still is) amazing.

 

BUT - he was five already. Apparently the LKSV meant that although his hearing was fine (tested three times!) his auditory processing was very slow, so he had trouble making sense of what he heard, AND the seizure activity also was messing with the part of the brain that moves learned language form short to long-term storage in the brain overnight. So what SAM did "get" he'd lose overnight. And having lost five years of language learning, he had not been able to make it up. His speech is hard to understand, and he can barely read. He will never live independently.

 

When one of his kid sisters seemed to be having similar problems, we had her into Chez asap, got her on the same meds - years younger than SAM had been. That kid is now a freshman in high school, Honors English, getting A's and B's!!!!!!!

 

IF your friend's child could benefit from treatment, better sooner than later.

 

JFS in IL, AutismNews (our private yahoo.group)

 

the following I just cut and pasted from hubby's website - if you can find these, they are good articles to read and to share with doctors.

 

Autism: Electroencephalogram Abnormalities and Clinical Improvement with Valproic Acid

By Audrius V. Plioplys, M.D.

Archives of Pediatrics and Adolescent Medicine Feb.1994, Volume 148

Documents three sample case studies of children who demonstrated marked, measurable improvement after a trial period of valproic acid.

 

Acquired Epileptiform Aphasia

By Roberto F. Tuchman, M. D.

Department of Neurology, Miami Childrenís Hospital, Solomon Klein Pavilion, 3200 SW 60 Ct., Suite 302, Miami, FL 33155.

Elaborates on the 3 different acquired epileptiform aphasias ( Landau-Kleffnerís syndrome, autistic epileptiform regression, and disintegrative epileptiform regression) that may be affecting up to ONE THIRD of all children diagnosed with a pervasive developmental disorder. (Source for statistic: Tuchmanís own presentation on November 15, 1997 in Rockville, Maryland. Other neurologists have mentioned a range from 25% to 40%.)

 

Treatment of Electroencephalographic Epileptiform Activity on Overnight EEG Studies in Children with Pervasive Developmental Disorder or Autism: Defining Similarities to the Landau-Kleffner Syndrome

By Michael G. Chez, M.D., Cathleen Buchanan, M.A., Michelle Field-Chez, M.D., Maurice F. Loeffel III, B.S., and Michael S. Hammer, M.D.

The Journal of Developmental and Learning Disorders, Vol. 2 No.2, 1998, pp. 217-229.

 

This article reviews the 278 children with PDD or autism who were referred to Dr. Chez for an overnight Digitrace EEG to check for acquired epileptic aphasia or LKS; includes treatment results of those children whose abnormal overnight EEGís warranted medical treatment. Concludes that ìour experience and recent reports show that early diagnostic testing with prolonged sleep or overnight EEG data collection is critical to the identification of partially or fully treatable conditions in children with PDD or autism.î

 

I'd like to add (oh, will JFS ever shut up ;-) that I KNOW the kid whose EEG scans are in the Chez article. He lives nearby. He was a bit younger than SAM when he started valproic acid and steroids. Now he is a very nice young man with very good language abilities who is preparing for college classes. He has also been off all meds for a few years (SAM can not go off w/o losing ground.) When meds work, they WORK!! ;-)

Edited April 8, 2012 by JFSinIL

[houseofkids&pets]

As a parent of a child with autism, I can tell you that I wish I had followed my gut instinct (and not listened to my pediatrician) when I was concerned about my ds. We lost an entire year of therapy services by waiting and watching. Early identification and initiating therapy as soon as possible is so important for our kids.

 

You might want to check out the First Signs website. They have video segments that you can observe that show some red flags. Another page on that site has some recommendations on how to approach another parent if you have concerns about their child's development. Here is a link http://firstsigns.org/concerns/parent_parent.htm.

 

I know that it is hard because some parents may become upset or offended if you start to discuss their child. However, I think that you are a good friend for wanting to help her.

[Peaceful Isle]

Wow, some awesome information and advice here. Thanks guys!

I talked to my MIL, who also babysits for this little girl, and she saw the red flags too.

I'm hoping her pediatrician see the signs in her 18 month visit soon. I am also going to casually mention my concern to my friend, and pray she does not get offended. I plan on being very gentle, but early intervention is best, like a few of you stated. Please pray for me, that I say the right things, and she takes them well and takes action.

Like I said, I love this little girl. It has been all consuming in my thoughts the last two days. :(

[Occasionally]

Something like, "Hey, I've been thinking about your daughter and the concerns you mentioned. I think it might be a good idea to get her evaluated. Why don't you call for an appointment now and I'll go with you if you want."

 

This sounds like a good way to bring it up.

 

Like I said, I love this little girl. It has been all consuming in my thoughts the last two days. :(

 

Maybe you should mention this when you talk to your friend :grouphug:

[Pippen]

You also may want to point her to the cdc milestone list. The regression of speech and echoing (it's called echolalia) along with regression of social skills should be a big red flag to any pediatrician.

 

http://www.cdc.gov/ncbddd/actearly/index.html

[myfunnybunch]

Thanks ladies. I feel the same way. Just a lot of red flags. :( I want to talk to my friend. I don't know what to say, without freaking her out. She is very sensitive.Their little girl is their world. They have already noticed her speech going downhill and are worried. :( I am pretty close to her, but I am still not sure how I should approach it.

My friend has mentioned the changes to me, and they are a little worried.

 

Please say something, gently.

 

I had several friends say, "I'm sure she's fine," when I discussed my worries about my daughter's development.

 

Later they told me that they were worried too, but didn't know what to say. It's not anyone else's responsibility that I waited to have my daughter evaluated, but she was my first baby so I had NO idea that she was anything beyond a little quirky, and I might have taken her in much sooner had someone said...something.

 

I'd ask your friend what her pediatrician says and encourage her to take her dd to a pediatrician specializing in childhood developmental disorders for an evaluation. All of the things you're describing should be red flags even for a regular pediatrician, but they usually don't have the experience to do a thorough evaluation.

 

I'd start with something along the lines of, "I love you, and I love your daughter. I know she's your world and that you're worried about (specific worries your friend has shared). What does your pediatrician say? Have you thought about taking her to a developmental specialist?"

 

:grouphug::grouphug::grouphug:

 

You are a kind and brave friend to speak up.

 

Cat

Edited April 7, 2012 by myfunnybunch

[Peaceful Isle]

You guys have really helped me with this whole situation. :grouphug:

[MistyMountain]

I would definitely tell her to get an evaluation because they could be red flags but my older kids both lost speech and they do not have autism or other developmental issues. I did get them evaluated by EI and my ds qualified for therapy but he would of progressed without out it. My kids do some of the other things you listed. They never had a loss of social skills though and their speech wasn't very advanced when they started losing words.

[Sevilla]

She can request a free evaluation through Early CHildhood Intervention - I would advise that more than going through the pediatrician as I know too many parents whose developmental concerns were dismissed by their ped as 'normal' for too many lost years.

[myfunnybunch]

Leave it to the ped to do the diagnosis.

 

I agree a doctor should offer a diagnosis. But please don't leave it entirely to the general pediatrician. They often miss these signs, even if the parent lists concerns. My daughter's missed it. (He thought she was fine because she could talk.) My friend's son's doctor missed it. (He thought he was ok because he made eye contact for a split second when the doc entered.) They shouldn't miss it, but they are human and they see these kids for 15-20 minutes and they do make mistakes.

 

A child with those signs and behaviors needs to see a developmental specialist, if only to rule out a developmental issue. I agree that contacting your school district's early intervention team for an evaluation is also a good idea. They have lots of experience with children with a variety of developmental needs.

 

Cat

[Peaceful Isle]

Yes, I completely agree not to just "trust" a doctor's wait and see approach. I have fought for my children on different serious medical issues before.

[JFSinIL]

I would like to add - when my mil first noticed and brought up SAM's delays (compared to his fraternal twin who turned out gifted he did seem a tad behind even to us) we took the toddlers to a speech therapist. The therapist was young - and positive that playing with the kids and having them repeat words was all that was needed. She had SAM repeating tons of single words - "See, he is fine!".

 

She did not know about echolalia!!! Which is all he was doing!!! We lost more time thanks to the (well-meaning but too new and inexperienced) first speech therapist. Sigh.

 

A team evaluation is better than having one doctor only see and evaluate the child.

[Crimson Wife]

She can request a free evaluation through Early CHildhood Intervention - I would advise that more than going through the pediatrician as I know too many parents whose developmental concerns were dismissed by their ped as 'normal' for too many lost years.

 

:iagree::iagree::iagree: I love our general pediatrician to death, but she kept dismissing my concerns about youngest DD by saying that there is a lot of development between 18 and 24 months, then between 2 and 2 1/2. Which is true for many kids, but as it turns out, mine wasn't one of them. I'm glad that I got DD on the Early Intervention waiting list at 22 months and that she was able to start therapy through them at 26 months. By the time our general pediatrician acknowledged there was a problem with DD at the 3 year appointment, DD had already been receiving services for 8 months.

 

EI will do an evaluation at no cost, and provide services at little or no cost if the child qualifies.

[gardenmom5]

I'd suggest she been seen by a dev. ped. make a list of odd behaviors. (my regular ped - and his backups - consistently dismissed my concerns. I had to force it and was only listened to when I brought in a list of at least two dozen "odd" behaviors.)

 

My son actually was displaying odd behaviors in the special care nursery to the point the perinatologist commented on it.

 

I'd also suggest a visit with a DAN!, they take a nutritional/supplement/diet approach and it can make a huge difference.

[Amber in AUS]

Thanks ladies. I feel the same way. Just a lot of red flags. :( I want to talk to my friend. I don't know what to say, without freaking her out. She is very sensitive.Their little girl is their world. They have already noticed her speech going downhill and are worried. :( I am pretty close to her, but I am still not sure how I should approach it.

My friend has mentioned the changes to me, and they are a little worried.

 

I've not read all of the responses, but perhaps you could say "I was reading a parenting book/magazine and it made me think of your DD as they were saying any regression of skills should be evaluated by a pedi."

 

I really think this little one needs an evaluation. What you have raised is concerning. I know from experience with a friend who's 9mo had a severe B12 deficiency that until it was pointed out she didn't really realise the severity of the situation. Her DD spent weeks in hospi and she went from everything is fine, to OMG and hospi in a matter of hours. Once Mum realised she acted fast but it's coming to the realisation that they sometimes need help with. It's a sensitive issue :grouphug:

[Tap]

We had dd5 evaluated through Early Intervention at 2yo. The evaluation was thorough and accurate. In her Evaluation they had 5 therapists in one room with dd5. DD, myself and the therapists sat on a large rug with toys. They would each take turns working with her for a total of an hour or so. By having them all evaluating at one time, they could save time and take notes while the other therapists were working with her. They let her get as far as she could with the evaluation, and then wrapped it up. The evaluation was just her playing 'games' with the therapists and it was a happy, healthy experience.

 

The results of the evaluation identified skills that she had, which were ahead of age level and those that were behind. They helped me put words to her issues and helped me see what they saw as problems.

 

There were some issues that they identified as lower than age level, but not problematic enough for intervention. There were other issues that she did qualify for services. We were able to get her Occupational Therapy and Behavior Therapy through their offices. Other issues that were identified on her eval, were written in such a way that I was able to do research (and ask her therapists) and work on those myself at home.

 

DD is 5.5 now. She has had over 200 therapy sessions. When I look back on our evaluations (done yearly) I see how far we have come. For us, I can tell you, very-very few of her issues have gotten better without intentional work. The therapists were great at identifying issues that I didn't even realize were a problem. For example, one, was that at 4yo, dd couldn't identify emotions buy looking at a face. She couldn't tell if someone was happy or sad by just looking at them. We had to teach her how to read emotions.

 

Early Intervention for us, has been a God send. I can not fathom what our lives would be like with out it. DD5 will likely have issues her whole life, but we have been able to minimize them to a point where she can function (with assistance) in the regular world. Without EI, I doubt that she would be in daycare or Preschool. I doubt that she would be visiting a friend across the street right now. I doubt that she would be the person she is today. We were able to work on tiny increases in skill levels, day by day. The therapists were often working on 10 different things in one, one hour session. 5 minutes on one task, and then moving on to 5 minutes on another. Activities were set up with DD5s needs in mind and then she could pick what she wanted to do. The therapists weren't upset when she only spent one minute on an activity they spent 10 minutes setting up, because the next time, she may spend 2 minutes on it, and then 5 at the next session. As a parent it would have been exhausting and expensive to provide all the therapy tools she used at her OTs office.

 

With EI you are able to work on issues as the come up, and not wait until they are so ingrained in a persons being that you are fighting against their will to modify behaviors. The therapists knew what was age appropriate and what was not. They know what is a common warning sign to many issues and what is just a 'silly things kids do'.

 

I can go on and on but let me leave you will one thought for your friend. EI evaluations, are just a tool to get services. A person can have the evaluation done and then choose to not pursue services. An evaluation may identify the child as NT, and the parents can walk away knowing everything is ok for now. It opens doors.

[besroma]

:grouphug: Praying for you and your friend.

[Audrey]

Thanks ladies. I feel the same way. Just a lot of red flags. :( I want to talk to my friend. I don't know what to say, without freaking her out. She is very sensitive.Their little girl is their world. They have already noticed her speech going downhill and are worried. :( I am pretty close to her, but I am still not sure how I should approach it.

My friend has mentioned the changes to me, and they are a little worried.

 

 

The very next time she mentions any of this to you, THAT is the time to gently, but firmly suggest an evaluation. The sooner, the better. Keep suggesting it every time she mentions it until she goes, or until she blows up at you.

 

Then, be there for her. I have an unfortunate feeling she's really going to need a friend. :(

[Peaceful Isle]

:iagree:Sounds like a good plan. I agree she will really need help during this time. :( Like I said before, she already has a disability herself, and it takes everything in her to get through the day.

 

I have cleaned her house for her before, watched her little girl, and made her meals. She is one deserving lady. Always giving of herself to others, as much as she can.

Sometimes I wonder why she, of all people, has had such a rough go of it.

I know God is in control, but it still doesn't make sense.

[Kathryn]

Please tell her exactly what your concerns are and soon. Don't wait for her to bring it up again. I wasted YEARS because every time I voiced a concern, friends would dismiss it, trying to make me feel better. It only took ONE person affirming my fears for me to finally pursue a diagnosis. I should have listened to my gut all along, but because I didn't, DS was not diagnosed until he was five years old and will be on the waiting list for ABA therapy until he's probably 7 or 8 years old. With all we know about early intervention, it is crucial that she gets the ball rolling as quickly as possible. Time really is of the essence at this stage.

[Peaceful Isle]

Well, I spoke to my friend in church nursery this morning. It was just me and her, and our two little babies. I asked her gently if her daughter had gained her words back. She said no, and kinda looked away. She assured me that she uses sign language instead, which she does.

:( So, I waited a while, and then asked if she had spoken to her doctor about it, and she said she had. Her doctor told my friend that her daughter was fine, and she didn't need to come back until she was 2. My friend also said she had spoken to her mother about it, and her mother said she was fine as well. So now, I'm feeling stupid, and maybe it is all in my head.

 

Well, after that, her little girl started her fits ( for no reason- like a light switch went off), screaming, needing to constantly stroke her mom's hair, not respond to us, or look in our eyes, arching her back, tantrums, obsession with her one favorite item in the nursery( that my son had, and I quickly gave back to her)

 

:( ..so sadly I was not able to continue the conversation. My friend did not seem to want to talk about it at all, so please pray for me, that I will have another chance to chat with her about it.

 

Am I overreacting? Goodness,...I never want to hurt my friend by suggesting a false diagnosis. :(

 

Thanks for all the help so far. I'm just so at a loss, especially after talking with her today. She kinda just shut down when I started talking about her little girl.

 

Side note: My son has had a lot of medical issues with torticollus, having to have a orthopedic cranial cap, and physical therapy for his twisted neck, so I have never acted like my son was better. Actually, the contrary. I have always complimented her daughter on how advanced she was, beautiful, sweet, etc.. I guess that is why it is so hard now.

 

Do you think she has a gut feeling, but just doesn't want to admit it to me??

Edited April 9, 2012 by mommyof4AZ

[Jean in Newcastle]

Do you think she has a gut feeling, but just doesn't want to admit it to me??

 

Yes. I know it is really hard but I would leave it. I would pray about it and be open to talk about it if she brought it up, though.

[Audrey]

I agree with Jean.

 

I'm sorry. These kinds of things are so hard for everyone involved.

[Peaceful Isle]

Thanks guys. :grouphug: I'm gonna leave it alone for now.

[besroma]

Lindsay,

 

I know this is hard. I'm sorry you were not able to really talk to her.

 

She knows you care. Hopefully there will a time that she will want to talk about it and you can mention that if she wants to go see a specialist, that you would go with her.

 

:grouphug:

[Donna]

I think your friend now knows you care and when she is ready to talk, you may be the one she comes to. Sometimes, as a parent, we only hear and know when we are ready emotionally to know. It seems, if she's spoken to her doctor and her mother, she knows in her heart something isn't right with her dd. It is a shame the doctor did not take her concerns seriously and suggest followup with EI just to be sure...a doctor only sees the child for a few minutes at a checkup.

 

If you have a chance to bring it up again, maybe just mention that if she isn't sure about what her mother and doctor think or has concerns, she could always get her dd checked out for free through Early Intervention and if you could have the number on hand or a flyer or something it might help. I would hate to see her wait until 2yo to have her dd evaluated...so much time would be wasted by that point and the little one is using some signs now so it would be an opening for communication if she were on the spectrum.

 

I wouldn't mention a diagnosis, even as a therapist, only a doctor can make that but just discussing your concerns, those red flags, or even asking what made her talk to her doctor and mother would get the conversation going. If you know someone who does Early Intervention for their child, you could mention that and how it has helped the family.

Edited April 9, 2012 by Donna
forgot to add something

[SailorMom]

Did the doctor check the child's hearing? I would think a hearing test would be in order. That would actually account for many of the behaviors....

[Peaceful Isle]

I'm not sure if her hearing has been checked. It doesn't seem like she is hard of hearing, but hey, you never know. Thanks for the tip. :)

[Starr]

Maybe you could get a list of appropriate specialists ready that you could hand her when the time feels right. It can be so overwhelming when you are stressed. You are a good friend.

[Peaceful Isle]

Update:

 

I was having dinner with my friend yesterday, and there was a breakthrough!

She mentioned to me that she had noticed her little girl had oddities, and suggested that it might be on the autism spectrum.

Now, I had not even mentioned that word to her, it was just my gut about her little girl. I am so glad it did not have to come from me, but she was willing to admit that. Now, it will be a process to get her evaluated.

 

A big thank you to those that have prayed for this situation. :grouphug:

[Starr]

You must be so relieved. I hope things move along well and quickly. :grouphug:

[momto2Cs]

Update:

 

I was having dinner with my friend yesterday, and there was a breakthrough!

She mentioned to me that she had noticed her little girl had oddities, and suggested that it might be on the autism spectrum.

Now, I had not even mentioned that word to her, it was just my gut about her little girl. I am so glad it did not have to come from me, but she was willing to admit that. Now, it will be a process to get her evaluated.

 

A big thank you to those that have prayed for this situation. :grouphug:

 

Phew! The sooner she gets assessed, the sooner they can start working with her, and the better her chances are of doing well.

 

I will still keep her in my prayers! :grouphug:

[jallison25]

i'm so glad she brought it up to you and seems to want to find out what is going on! I know someone else mentioned it but the hand wringing makes me concerned about Retts syndrome! I hope it's not that!!!!!

 

Update:

 

I was having dinner with my friend yesterday, and there was a breakthrough!

She mentioned to me that she had noticed her little girl had oddities, and suggested that it might be on the autism spectrum.

Now, I had not even mentioned that word to her, it was just my gut about her little girl. I am so glad it did not have to come from me, but she was willing to admit that. Now, it will be a process to get her evaluated.

 

A big thank you to those that have prayed for this situation. :grouphug:

[Kathryn]

That's great news. Please do impress upon her that timing is essential here, either to start treatment or to rule it out for peace of mind.

[Peaceful Isle]

Thank you all for your encouraging words and prayers! :grouphug:

 

I totally get it about the timing issue, and will be ready to suggest getting her evaluated soon at our next play date time together. I am just so thrilled that she is open to this now. I think her mother gut instinct is telling her the same as mine has been for a few weeks.

 

Again, thank you ladies for all your words of advice and encouragement in this situation .

It made all the difference.