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I have not been active in the Parenting forum for sometime, yet we have been dealing with some major parenting issues. This post is in reference to our youngest daughter (youngest of three; one boy (7.5) and two girls (4 and 2.5). Before I relay the back story I wanted to say where we are at now and what I am hoping to get responses on.
We have an appointment in mid-August at Saint Peter's Hospital in New Brunswick with a pediatric neurodevelopmental doctor. The doctor is the head of this particular program that specializes in autism spectrum disorders as well as other developmental issues and disorders. This hospital was not our first choice, but there was over a one year waiting list for an evaluation at CHOP in Philadelphia. Apparently there is a huge demand for these services in NJ and precious few doctors that can provide them. I am mainly asking for advice in terms of things we should be looking out for and what should be involved in the evaluation. Is there anything I might overlook that might be important to mention to them, etc.?
The backstory...
Earlier this year, say around February/March my wife started mentioning some concerns and difficulties she was having with our youngest daughter. In particular she had developed an extreme temper and was very quick to display it. Many things set her off, but it seemed to revolve around over-stimulation, sudden changes in routine and her not getting her way. She would lash out not only at other people such as my wife and I and her siblings, but would also engage in self-destructive behavior such as scratching and biting herself and pulling her hair. When she really lost it, she would also try to damage things in the house or use objects as weapons against people. Getting her to "snap out of it" took a long and concerted effort that would generally be a 30-45 minute ordeal. It would 15 minutes of preventing her from causing damage to the hourse, herself and others. That would follow with 15 minutes of her screaming, crying and pacing and then 15 minutes of her slowly emerging back out and being able to be redirected into something else at which point it was back to "normal". It got to the point where it was virtually impossible for my wife to leave the house with her outside of the routine of going to the bus stop in the afternoon. She also threw fits if left in the care of anyone besides my wife, though I could get her to come out of her fit, so she could stay with me. Grandparents or anyone else was a no-go.
She also began to become extremely picky over the clothing she would wear. In general she only wanted to wear dresses and only certain ones were acceptable. She also still wears diapers and began to absolutely refuse to wear her nighttime diapers (they are a different brand from her regular ones) saying that they "hurt", though there was no signs of a rash that would indicate a reaction or problem. She also became fixated with the fact her regular diapers have a monkey on them and refused to even consider a diaper without a monkey.
At the same time she began to have great difficulties sleeping. She had always been our best sleeper and would generally be in bed by 7:30p and sleep clear through until 8a or so in the morning. Quickly following on the temper issues were sleep issues. She began refusing to go to bed and would throw an absolute fit if we tried. This resulted in many nights of her simply staying up until she fell asleep exhausted. Unfortunately even then, she would not sleep through the night and would often wake up and throw an absolute tantrum for an hour before going back to sleep only to repeat it again a couple hours later. We tried everything from bringing her in our room, to staying with her, etc. all to no avail, she had to finish the tantrum and it didn't matter what else was going on. This culminated in a period of time where she had maybe slept a total of 10 hours in a 72+ hour period of time. With her exhausted and my wife and I beyond exhausted and frustrated we called the doctor.
The meeting with the pediatrician went well (we have a great relationship with our doctor and trust him), but he was not convinced at the time that there was anything beyond a temporary issue. He suggested a couple of things to help alleviate the problems and that we would go from there:
1. Establish a firmer routine and follow it religiously. He also suggested including going out to be part of the routine for an hour or so each day, to help her understand that going out, not just to the bus stop, was something that was a part of the day.
2. To help with the sleep issue he suggested beginning melatonin therapy and see if that would help her to fall asleep and stay asleep longer.
3. When it came to the clothes and the diapers it was something we should probably not try to fit right now until the larger issues are more settled.
We followed his recommendations to the letter and there was improvement. We lessened the number of and intensity of her meltdowns. We have gotten to the point where we can go out to the store, but we cannot extend that to multiple stops, it is one store and home, or we have an issue. The sleeping has thankfully been one area we have seen massive improvement in. She now goes to sleep (with the melatonin) on time and is up to about a 50/50 split of sleeping through the night. When she does wake up we have a small routine that we follow that takes about 5 minutes to get her re-settled and back to sleep and allows us to leave the room. Occasionally, she still has nights when she is up several times, but nothing like before.
Through all of this over the past couple of months my wife has been insistent that there is something "different" about her compared to the other two. It's not something that one would see with casual observation, but is evident when you watch her for prolonged periods of time. My wife contacted the pediatrician again and said that while there was improvement, she just felt something was "off". He agreed based on what we have told him that there may be something, so agreed that an evaluation would be the logical next step. He also gave us some things to look out for. I will list our current observations and concerns:
1. Developmentally she has always been at the extreme end of "normal". We are trying to really remember all of the milestones to confirm. The issue for us is that the other two were firmly in the normal to advanced range on all of their milestones. In general she did everything later then her siblings. For example, she crawled later, walked later, talked later, etc. However, her milestones alone are not anything that would indicate a problem.
2. She lacks any form of imaginative play. Give her blocks and she will build a tower or line up the blocks. Give her toys and she will line them up and that's it (God help the person who messes with them). However, this is often masked by number three...
3. She is a major copycat of her siblings behavior, in particular her sister. She can be sitting, lining up her toys and then her sister will come in and start playing. She will then mimic how her sister plays with the toys. Her sister leaves, she stops playing. This is radically different from the other two kids who could turn an empty milk carton into a spaceship and go explore "Mars" aka the living room with it. We basically realized that she is two different kids, one around her siblings where she has someone to copy and another by herself where she is far more withdrawn.
4. Socially she is fine around her siblings and immediate family. However, introduce other kids like her siblings friends and she becomes withdrawn and reclusive. If the other kids are outside playing, she prefers to be inside by herself. This extends to public playgrounds where she chooses things away from other kids and if there are a lot of people simply wants to be on the swing with mom or dad pushing her. She is very withdrawn around adult 'strangers' and will not acknowledge them or talk with them, instead turning her head or hiding.
5. She has an aversion to certain textures. We quickly realized that her clothing issue was resulting in her picking dresses that were all the same kind of material. It wasn't that she wanted dresses, she just wanted a certain kind of material. She is fine in other clothes as long as the textures are very similar. Same thing with the diaper. She seems to simply prefer the texture and feeling of her regular diapers. Even when we have tricked her into putting another brand or type on, she immediately gets upset and rips it off.
6. She demonstrates echolalia. If you say, "Do you want a drink?" she responds by saying "drink". If you ask her "Do you want chicken or pasta for dinner?" she responds by saying "dinner". Ask her, "Do you want to color?" and she says "color", etc. She has also taken to associating the wrong name with things without recognizing the correct word at all. For instance, she now calls her diapers "monkeys" (they have a picture of a monkey on them) if you tell her to get a diaper from the drawer she won't do it. If you tell her to get a "monkey" she knows what you mean. If you hold a diaper in your hand and say "diaper" she will shake her head and say "monkey". Show her a picture of a monkey and say "monkey" she just gets confused and then shakes her head no and says "ooh ooh ah ah".
7. She occasionally demonstrates more advanced speech. For example when she gets up in the middle of the night, she will often call out "Mommy, Daddy, where are you?" and say it crystal clear. However, that is few and far between. Most days she starts out with "OK" speech, mainly using single words that then regresses to just general pointing (for example pointing at the kitchen if she wants a drink) and if she talks at all it's prompted or incoherent. Overall I would say that her speech has regressed over the past couple of months.
8. She has a strong association with two particular objects, a bunny rabbit pillow pet and a teddy bear. While she can put them down, she always needs to know where they are. They must go everywhere with us and she insists that they not be left in the car. We can get her to leave them in the car if her brother and sister have something and make a display out of leaving it behind (yes, we occasionally use her high level of mimicry "against" her). If they need to be washed and they often do, she insists the laundry room door remain open so she can see them in the washer and dryer. While the other kids certainly had things they were attached to, she has taken it to another level.
9. She doesn't like too much activity or noise. We live in a loud and active home, so that seems to be ever present. However, the louder and more active it gets the more she shuts down. We have had times where one parent takes the other two kids out for an afternoon and she will seem to be more relaxed and open in a quiet one-on-one environment. However, at that time, she also seems a little "lost" and will just watch TV or "organize" her toys unless you actively engage her in doing something in which case she follows your lead in playing. For instance, she likes playing with the fake food / tea set toys. However, if her older sister isn't there to organize it into imaginative play she just dumps them out and stares at them.
10. Physically she is OK developmentally, but we have noticed some delayed areas. She will not walk up steps unless she does it one at a time, always leading with the right foot. She used to be able to walk down the stairs, but now prefers to be carried or she will just turn around and slide down one at a time on her belly or sit down and go one at a time on her butt. So, there is some evidence of regression there. She was a big time tip-toe walker when she was younger and while it is mostly gone, she still does it especially when she is excited. She also flaps her hands when she is excited and will turn in circles or bounce. She also has a "tic" of sticking her tongue in and out like a snake when she becomes unsure of a situation.
11. She is tied to her routine like nothing else and we have found that when she gets overwhelmed or upset she needs to "return to base". If we are out shopping she can only go into one store. If you try to do two stores, she instantly throws a fit. However, if we return home even if just for 15 minutes, she will then go back out to the other store without a fuss. When she starts to feel overwhelmed she retreats and wants to watch a specific YouTube nursery rhyme video (monkey's jumping on the bed by hooplakidz) and will watch it repeatedly for up to 30-45 minutes before you can disengage her from it.
So, those are basically our observations. There is more I could write, but this is getting long (thank you to anyone who has made it this far). Taken individually none of her issues are all that big of a deal for a 2.5 year old. However, taken in total it leads us to believe something is going on here outside of normal. We were led to think it may be Asperger's by our doctor, but he did not want to state anything definitive. In terms of family history, there are people with auto-immune diseases on both sides and my first cousins son has Aspergers. Through reading things and going over the signs with my MIL and wife, they are both very much convinced that my SIL (who has several issues) most likely has undiagnosed Asperger's.
Again, thanks for letting me vent and write all this out. I would very much appreciate any advice on what to expect and things I should be prepared to answer at the doctors. We filled out an extensive questionaire and set of paperwork, but I am still unsure as to what to expect overall at the appointment and would like to be as prepared as possible. A coworker suggested videotaping some of her actions to show the doctor and we have some clips of her behavior that we find most troubling. If anyone also has any thoughts on what might be going on or other signs to look for, I would be more then happy to answer them or talk about it.
Ultimately, our goal is to determine what, if anything, is going on with our daughter. If there is an issue then we want to get her the help she needs as soon as possible in order to realize the best outcome. We are not the types who go looking for problems or want to deny they exist. We just want to do what's in the best interests of our child.
Best of luck to you. My son does some of the things you mentioned. He didn't get an Autism or Asperger's dx, but has "Asperger's like behaviors" and has sensory processing disorder. SPD can stand alone, or go hand in hand with other disorders. Routine and structure are very important for him. I'm glad you are going with your gut and getting an eval now. I started to suspect my son was "different" at about 2 years, but all his ped said is "he's a boy." We didn't have him evaluated until he was 7.
Goat, I think you've done the most important thing already, by writing out all of your concerns so you won't forget anything. I hope everything works out well for you. NJ has some of the better programs in the country.
My son was finally diagnosed with autism this May. He is eight now. We had first heard of the possibility of it in October through a private psychologist, but since he was officially diagnosed through the school system, well... it took quite a while to be 100% sure. I was told that my son has Asperger's by the school psychologist, but that the school can only officially diagnosis him as autistic.
Looking back in makes sense now (there were a lot of signs we missed- dating all the way back to infancy). But we always saw a good pediatrician, and nothing ever stuck out that seemed obvious.
As an infant, my son didn't really play either. He sorta held a few toys and maybe stacked them. But he didn't play. But he was an only child and I didn't have anyone else to compare him to. It wasn't until I had my daughter four years later that I got to say, wow... she's really different. But she wasn't the different one. It was him.
Your daughter has a lot of signs that her brain may possibly fall somewhere on the autism spectrum. She is rigid about routines. She is sensitive about sensory issues. She doesn't follow imaginative play. Doesn't engage in social activities. The echolalia... (I'm sure you are well aware of these and other markers for autism.)
However, only a professional can really say for sure. My son, for example, fluctuates from day to day in his behaviors. And I never would have thought that he was autistic until a psychologist brought it up while he was being evaluated for another issue- ADHD. And it suddenly dawned on me... and made sense. This is why my son cried all the time. (If he accidentally spilled his milk or messed up the lettering on his homework... bam....probably half an hour meltdown of tears). This is why he never participated in any group activities with other kids. (He cried and hid behind furniture). He disdained loud noise (He cried when he had music class at school because he said the other kids sang so badly). You get my drift... Things that I thought meant my child was just a sensitive child didn't mean that at all...
(What it meant was that his brain was different and that it would always be different. And that's okay...)
But you never know, you could be thinking Asperger's/autism spectrum disorder and it's something else completely different that you never even imagined.
It sounds like you're doing the right thing. If it could possible be something on the autism spectrum, the best thing you could do is to treat it early (early intervention is best). What I would suggest doing while you are waiting to go back to the doctor/get an evaluation, is to try to research Asperger's and autism as much as possible. There are internet resources, of course. And talking to parents of kids who have children who have already been diagnosed may be helpful.
I would suggest reading books on the subject. My son's therapist let me borrow a great one about Aspergers- but for the life of me, I can't recall the name or author. It was very simple. Just about children with Aspergers and it touched on many different aspects of their lives (had lots of short paragraphs and bullet points). It didn't go into much depth about any one subject, but it was a nice overview for someone to read who didn't know much about the topic.
I wish I could remember it... But there are lots of them out there. Just find one (or more) that you like.
Perhaps you can try (through your research), to find tips on how to make life easier to live with children who have autism/Aspergers and follow those in your life with your daughter while you are waiting to see your doctor again/get the evaluation.
I know routine helps. If she's sensitive to stimulation, that's something to watch, as well. Often, bright lights, loud sounds, certain touches (like some fabrics- as you know) etc. are really annoying and finding ways to avoid them can make her life/and yours better. Books, message boards, etc. that deal with autism spectrum disorders with often help you with tips to do this.
You are doing the right thing by pursuing a diagnosis with a developmental specialist. Second, you cannot jump to an asperger's dx for a child this young. It seems to make parents feel better, but the difference between asperger's syndrome and classic autism is not level of functioning, but the absence of a speech delay for a child with asperger's. This is why asperger's is generally not dxed before children are older and their social differences become apparent.
Note that Temple Grandin was nonverbal at 4 and would not have been dxed with asperger's. In fact, her mother was told to institutionalize her. She learned and grew and now has 3 degrees and speaks well. If you listen to her earlier speeches, you can see that she progressed even as an adult in terms of her speech and tone of voice.
Your dd may get a pdd-nos dx currently if she does not fit the criteria for classic autism. You can take this online test and see where you think she may fall (not a dx, but a good indication that many of us have used and found accurate)
For those who are getting a new diagnosis, the autism board at babycenter.com is an excellent resource. The first post on that board has lots of information. There are 6 pages packed with information for anyone who needs it. It includes common abbreviations used in discussing autism. I would love to see more information posted here for parents and caregivers.
Good books for anyone who wants to learn about autism and the most common therapies:
The Child with Special Needs by Stanley Greenspan and Serena Weider
Engaging Autism by Stanley I. Greenspan and Serena Weider
The Autism Sourcebook: Diagnosis, Treatment, Coping and Healing by Karen Siff Exkorn
Overcoming Autism by Lynn Kern Koegel and Claire LaZebnik
No More Meltdowns by Jed Baker
Teaching Children with Autism by Robert L. Koegel and Lynn Koegel
Therapies:
ABA (Applied Behavioral Analysis)
Behavioral Intervention for Young Children With Autism: A Manual for Parents and Professionals edited by Catherine Maurice, et.al.
A Work in Progress: Behavior Management Strategies and a Curriculum for Intensive Behavioral Treatment of Autism by Ron Leaf and John McEachin
The Verbal Behavior Approach: How to Teach Children with Autism and Related Disorders by Mary Barbera and Tracy Rasmussen
Educate Toward Recovery: Turning the Tables on Autism by Robert Schramm
RDI (Relationship Developmental Intervention)
The RDI Book: Forging New Pathways for Autism, Asperger's and PDD with the Relationship Development Intervention Program by Steven E. Gutstein, Carlotta Baird and Hannah Gutstein
Relationship Development Intervention with Young Children: Social and Emotional Development Activities for Asperger Syndrome, Autism, PDD and NLD by Steven E. Gutstein and Rachelle K. Sheeley
DIR (Floortime)
Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate, and Think by Stanley I. Greenspan and Serena Weider
Floortime DVD Training Series by Stanley I. Greenspan and Serena Weider
Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with SensoryProcessing Issues
Sensory Processing Disorder (most often comorbid with autism)
The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder, Revised Edition by Carol Stock Kranowitz
The Out-of-Sync Child Has Fun, Revised Edition: Activities for Kids with Sensory Processing Disorder by Carol Stock Kranowitz
Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with SensoryProcessing Issues by Lindsey Biel and Nancy Peske
Too Loud, Too Bright, Too Fast, Too Tight: What to Do If You Are Sensory Defensive in an Overstimulating World by Sharon Heller
Speech:
More Than Words: Helping Parents Promote Communication and Social Skills in Children with Autism Spectrum Disorder by Fern Sussman
Website explaining PECS (picture exchange communication system) Pyramid Educational Consultants - What is PECS? - PECS & Autism
Thank you all for the kind words and advice, reps to all. I don't have much else to add other then my appreciation for people taking the time to commiserate and lend some advice. I did want to respond to some of what nana posted:
I do admit we became fixated on Asperger's after the doctor mentioned in passing that it could be it. He explained that it presents differently in girls then it does in boys, however, he did clearly state that this was just a "hunch" and not definitive in anyway. He also clearly stated that getting an exact diagnosis at her age will be difficult. So, you are very right that we should probably stop looking at everything through an Asperger's lens. When we read about all of the different disorders, we could honestly make just about anyone of them fit what we are seeing. I think we should probably leave the "conclusion" out of it and just work with what we see and let the doctors do their jobs. One good thing about reading on all of the different conditions is that it helped us to recognize some of her behaviors and issues that we had overlooked.
My wife and I both took the online PDD test you shared. When I was done it scored as "Mild PDD" when my wife did it the score was "Moderate PDD". I had seen the "PDD-NOS" on some autism sites before, but your links helped explain it, so thank you for that. It seems you are correct that would be the most likely diagnosis at her age.
CarolinaMom had mentioned finding tips on how to cope and deal with her issues even before a diagnosis. We have done that and have had some moderate success. Our main concern was finding ways to keep her temper in check and prevent meltdowns and we have had some progress in doing that. That and sleep were the two most important things to us initially. No one is going to function well without sleep and thankfully we seem to have tackled that one with the melatonin. The temper issue was paramount for her safety and the safety of her siblings. Ultimately I feel really bad for her brother and sister. There have been moments where they just want to hide from her and it makes them reluctant to be near her. We have made some progress there, but it's not easy.
Does anyone have any tips on how to explain this to young siblings? So far we have pretty much just commiserated with them and told them that she has some problems making good choices and understanding things so we are taking her to the doctor for some help. They seem to understand, but we feel like we are putting an inordinant amount of pressure on them to be "model citizens" in order to avoid setting their sister off. For instance, both of the older two love Ninjago and like to act it out. They don't hurt each other or break anything. However, with the younger one around, she mimics what they are doing and always takes it too far and it is hard to get her to stop. We try to separate them or limit the youngests exposure to that kind of thing, but we can't escape the feeling that we are punishing the older two for being kids so we can avoid an issue with the younger one.
I'd call your local school. She should be able to get early intervention services starting in September since she turns 3 this school year. They will test her for free. School will provide her with structure and schedule, and it will give your wife a little break during the day. I'm guessing she'll receive speech services through the school too.
ETA: I think a lot of her meltdowns will improve with her ability to communicate what she wants and needs. She sounds a lot like my son who will be entering 4th grade next year. I remember getting him to switch from shorts to pants and pants to shorts when the weather changed OMG lol. Good luck to you guys.
Does anyone have any tips on how to explain this to young siblings? So far we have pretty much just commiserated with them and told them that she has some problems making good choices and understanding things so we are taking her to the doctor for some help. They seem to understand, but we feel like we are putting an inordinant amount of pressure on them to be "model citizens" in order to avoid setting their sister off. For instance, both of the older two love Ninjago and like to act it out. They don't hurt each other or break anything. However, with the younger one around, she mimics what they are doing and always takes it too far and it is hard to get her to stop. We try to separate them or limit the youngests exposure to that kind of thing, but we can't escape the feeling that we are punishing the older two for being kids so we can avoid an issue with the younger one.
There are books that you can read to the kids (more once you have a better diagnosis).
Here are a few:
Autism through a Sister's Eyes by Eve Band
My Friend with Autism: A Coloring Book for Peers and Siblings by Beverly Bishop
Everybody Is Different: A Book for Young People Who Have Brothers or Sisters with Autism by Fiona Bleach
Red Beast: Controlling Anger in Children With Asperger's Syndrome by A. J. AlGhani (might help explain her tantrums)
When My Autism Gets Too Big! a Relaxation Book for Children with Autism Spectrum Disorders by Kari Dunn Buron and Brenda Smith Myles (again useful for explaining why children with autism have meltdowns - great for the autistic child herself when she is a bit older).
Keisha's Doors/las Puertas De Keisha: An Autism Story/una Historia De Autismo Libro Uno by Marvie Ellis (most stories of autism feature autistic boys, this one has a girl at least and is bilingual)
Amazingly... Alphie! Understanding and Accepting Different Ways of Being by Roz Espin
My Sister Has Autism by Stephanie Ham & Sherry Ham (another one with a girl which is unusual and has a couple of nice reviews on amazon)
There are lots, but they probably don't apply to your situation - they tend to be about older boys who already have more things that present as autistic.
I'd call your local school. She should be able to get early intervention services starting in September since she turns 3 this school year. They will test her for free. School will provide her with structure and schedule, and it will give your wife a little break during the day. I'm guessing she'll receive speech services through the school too.
ETA: I think a lot of her meltdowns will improve with her ability to communicate what she wants and needs. She sounds a lot like my son who will be entering 4th grade next year. I remember getting him to switch from shorts to pants and pants to shorts when the weather changed OMG lol. Good luck to you guys.
Since she is currently under the age of three her eligibility for early intervention services in NJ is based on having more severe delays in developmental milestones then are currently present OR having a diagnosis from a medical expert. She cannot receive services from the school district without being in the state program.
We could have gone down just the state route, but at the advice of our doctor and some other parents they felt it was best to seek the expert medical opinion first. Our doctor basically said that they will look at her "milestones" and not necessarily see enough of a delay to think she qualifies under the state guidelines. However, a medical diagnosis results in instant qualification for services. Our doctor felt that it would be a better outcome to seek the medical option first given her age.
If she does have a diagnosis then she can begin pre-school (our district sends kids with developmental issues to a neighboring district that also has a specific PDD/autism program) as soon as she turns three. It is a full-day, near year round (they only have off a few weeks in the summer) program and they provide transportation services door-to-door. She would then have three full years in that program before she would be old enough to go into Kindergarten, or if she is doing well after two years she could move into the public Pre-K for the first half of her day. The basic goal of the program is to get the kids mainstreamed by the time they hit Kindergarten where they can be in a regular classroom, but supported with additional services in-school as needed.
I'm sorry to hear the issues you have been dealing with. May I say your summary and observations of your child's behaviors is excellent and would be useful to print out and save for future physicians to read.
I would still make an appointment at CHOP... even if it is a year in advance. You ALWAYS want to find the best place near you, and if this develops into something that continues to concern you, you will be happy to have the appointment. I would also call once or twice a month to see if they get a cancellation, and ask to be placed on a cancellation "list".
Good luck to you. You are doing a great job. It is very exhausting.
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