Expert: Jene Aviram - 3/9/2009

Question
QUESTION: I am completely at a loss for what is going on with my daughter.  I had a normal pregnancy with Kennedy, my second child, up until the very end.  I had a sonogram at 36 weeks where it was feared my placenta had shut off the support system for the baby since she was only measuring about the size of a mother that would only be about 20 weeks pregnant.  The doctor did not want to take her for fear that the lung development and other issues would be worse and that measurements can sometimes be deceiving.  So, unless I noticed decreased fetal activity then I would go until I went into labor on my own or there was a serious problem.  I had a stress test every other day until the last one I had, the day before I was due, showed not a lot of activity.  I was scheduled to be induced the next day, on my due date.  Everything was fine until they broke my water.  The nurse called into my room asking me to lie still because they kept losing Kennedy's heartbeat on the monitor.  I told her that was odd that I hadn't moved at all.  She came in to physically check on me and her eyes bugged out when she lifted my sheet.  She screamed to get a doctor and it was discovered that I had a prolapsed cord and it was hanging down between my knees.  It was cutting off Kennedy's oxygen supply as it was also wrapped around her neck, thus her sporatic heartbeat.  I had an emergency c-section.  There was no time for an epidural so I was knocked out.  My husband was there and he said it was frantic in the OR because she was gray when she came out and they had a whole team waiting to revive her and they did.  When she was 2 weeks old she came down with a seriously high fever and was hospitalized for a week with no concrete diagnosis.  

We were sure after all of this that she may end up with some kind of permanent injury or damage, but the only oddity I noted between her and her older sibling was the fact that she would not go to anyone else other than myself, most of the time not even my husband.  She was glued to me day and night and I was never one of those moms that held their babies all of the time.  She would lose her mind if anyone at the grocery store even waved at her.  She hated to leave the house.  She would cry the whole time we were in the car and where we were at.  

She cried a lot!  A lot!  All of the time.  It was discovered she had GERD at a few months old and she took Zantac syrup until she was about 18 months old.  That didn't stop her from crying a lot nor did it seem to completely help her digestive problems.  I breastfed her until she was 12 months old.  

She seemed to develop normally until she was 12 months old, rolling over, sitting up, crawling, walking all at the same time as my other daughter, which all seemed pretty early in age.  But she never spoke.  She was close to 2 before she really started to talk.

She would also bang her head when she was angry or outside her element.  We would pull up to preschool to drop my older daughter off and Kennedy would get out of the car and try to run from me and I would pick her up and she would wriggle out of my arms and bang her head on the concrete.  It didn't seem to hurt her.

When she was about 18 months old the pediatrician agreed that while she wasn't certain what her actual issue was she was pretty confident that this was not just temper tantrum behavior and she had something going on.  They wanted to just keep an eye on her for now.  She suggested that I make an appointment with the only place in our city that does evaluations but they are booked for a year.  

She is talking pretty well now, she will be 3 in July, and she has made advancements as far as being around people and playing with other children.  But I still see her having a very difficult time listening and following instructions.  She won't do it.  

She hates noise.  We went to the circus for the first time with her two days ago and she sat with her hands over her ears in my sister's lap and repeated she was so scared.  She is so disruptive when we are out places that I refuse to take her anywhere, especially by myself, unless I absolutely have to.  I will usually rely on my sister to go with me or wait for my husband to get home to stay with her.  She never stays with me and always runs off.  For example, she was upset that I wouldn't allow her to pull tags off of clothing in a store at the mall and we left the store so she took her foot and bent her shoe up to her mouth and started chewing the shoe up and spitting it out.  She pinches and bites people, she screams at the top of her lungs and laughs, she is awful to me and her sister and my husband, hitting and ignoring rules and boundaries.  She acts like she doesn't register or doesn't care when someone is hurt or upset or shows any emotion at all.  Her behavior is so bad that we went through 4 nannies in 8 months, one of which was a registered nurse and the other had previously cared for 2 autistic children.  I finally quit and now stay at home full time.

She is to the point where she will only eat the same meal every day for breakfast lunch and dinner.  Has to be the same thing.  Everytime.  No varying.

I have talked to other parents with autistic children that swear that she is very mildly autistic and I have a friend that is a nurse and another one that is a social worker and they both insist that there is no way she is autistic.  My mother thinks there is some issue but doesn't know what to think.  My husband and I are stressed out and I have no idea if she is just a kid with a very bad attitude or if she needs help.  Thanks for your help.

ANSWER: Hi April,

My heart goes out to you.  Your path has certainly been rocky.  People don't realize how draining it can be to have a high maintenance child, coupled with the anxiety of wondering if your child needs help.  I know how exhausting it can be and you're obviously a loving and caring mom.

Your daughter certainly had a difficult birth experience.  From past experience, practically every infant that's undergone medical procedures or separation from the Mother at the infant stage often has sensory challenges.  Your daughter certainly seems to fit this description. But you will be AMAZED how some OT (Occupational Therapy) can make all the difference.

Some examples of sensory challenges are not being able to tolerate noise, tags on clothes, touch that's too light, touch that's too firm, not reacting appropriately to pain, attempting to control their world by organizing things such as their possessions, very picky eaters, not being able to tolerate certain materials, not being able to calm themselves down which results in never ending tantrums, chewing clothing or non-edibles. The list goes on...

It's impossible to diagnose over the Internet whether your daughter is on the autism spectrum, especially since so many traits overlap between simple sensory issues, ADHD, autism etc.  I think you will find this article very helpful.  It's called "How do you know if your child has autism?"  You can download it here http://www.nlconcepts.com/autism-howdoyouknow.htm
It might give you a better idea about whether your child has characteristics of autism.

What do you mean that you have to wait for ONE YEAR for an evaluation? That doesn't sound right at all.  With the IDEA act, your child is entitled to a FREE evaluation.  I would call your local early intervention center and find out where you can get that done.  Even though she's just passed the early intervention stage, ask them who you should contact.  One year is an unacceptable time frame to wait.  If your daughter qualifies for services and from your description she will certainly get Occupation Therapy at a minimum, you wouldn't believe what a difference a year would make.  She'd be a totally different child by then.  Early Intervention is KEY.  The progress at a young age is great and if she needs services, the sooner you start the better.  I can't stress this enough.

Go to this link and select your state, then scroll down and call the local offices to ask for help in getting an evaluation ASAP.
http://www.nichcy.org/Pages/StateSpecificInfo.aspx

April - you are doing all the right things. You're a great Mom and if your daughter needs help, I have no doubt you'll be able to get it for her.

I hope this has been of help.

Jene Aviram
http://www.nlconcepts.com



---------- FOLLOW-UP ----------

QUESTION: Hi Jene,

Thank you so much for your response, it helped a lot.  Sometimes I feel so mean as a mother for disciplining her and not knowing if I'm hurting her feelings or doing a disservice to her because I'm correcting her for things that she simply knows no better for.  I love my daughter and I want to help her if she needs it and I don't want her to hate or fear me because she thinks I'm mean when it's just that I don't understand why or how I should be doing it differently so that she does get it.  But I also don't want to be 'that mom' in the restaurant or at the mall with people looking at me thinking 'please do something about your child', which is why we don't go anywhere.

We actually made an appointment, there is only one place in Cincinnati and that's Children's Hospital Medical Center but the appointment was a year away from the time we made it.  I lost my job when the last nanny quit and I couldn't make it to work and so we lost our insurance 2 weeks before the appointment and we weren't seen.  I tried to make another appointment now that we have insurance again through my husband's employer and they have no openings until around Christmas time unless I want to drive to another city, which I absolutely will do, but I have been warned by the pediatrician that they are just as booked as Cincinnati, OH facilities.  I have tried contacting speech and occupational and behavioral therapists because the pediatrician said it couldn't hurt however no one will see her without a diagnosis and I just feel that everywhere I turn the door is shut and the longer she goes with no help the worse it will be.  

We also tried contacting a local program that helps coordinate services for children with developmental disorders, which you are correct, we are fairly sure she has one, we just don't have a concrete diagnosis on it or understand the scope of it.  If she is autistic she is high functioning with some definite behavioral problems but I feel bad though if there is nothing there.  However, with my husband having very severe ADHD and her experiences at birth I am confident there is something going on.  That service hasn't been helpful at all.  They just told me to call every week to see if Children's has a cancellation but that they cannot push therapists to see her and they only thing they would do on their own is make a recommendation as to whether she actually needed those services and the pediatrician has already done that.  Plus, our insurance does not cover most of these things, especially with no diagnosis because in plain words they feel as if you are just taking your 'problem child' to a doctor and that it's not medically necessary or life threatening for her to go.

I think my 4 year old has probably suffered the most.  She is not a jealous child at all but I think she quietly gets her feelings hurt because I cannot spend the time that I should with her because I am always attending to Kennedy.  She probably feels like a 2nd caregiver to Kennedy rather than a child and a sister.  She absolutely loves her sister and is so good to her and helps me so much, she is 'wiser' and 'older' far beyond her 4 years, but it just makes me feel as if I have failed them both.  I also feel bad for my husband.  He now works 12 hour days so that I can stay home with her but when he gets home all I want to do is run away and it's not fair to him because he's exhausted from work.

I guess there's no question here, only venting and frustration from the run around I feel like I get from the medical professionals around here.  I will use your links and keep trying.  Thanks so much, you really have a been a great help!

April

Answer
April,

What you have described is the TYPICAL profile of a parent who has a child with special needs.  You are not alone!  A mother's role is to be loving and take care of her kids while encouraging them to be independent.  A teacher's role is to educate a child and use every moment as a teaching opportunity.  A therapists role is to help a child learn in a unique style, being nice but firm, even when a task is difficult for a child.  

When you have a child with special needs, you suddenly have to play all three roles - without any training!  Finding a balance is difficult to say the least.  In fact, it's almost impossible. There will be good days and bad days.  Try to remember that so you don't beat yourself up on the bad days.  Every parent who has a child with special needs goes through this.  You want to be a mom, not a teacher.  You want to be loving, not a disciplinarian.  It's not easy!  

What you feel about your 4 year old is totally normal.  There are sibling support groups for a reason!   When things settle down and your 2 year old starts receiving help, try and do something special with Kennedy even if it's once a month. It's wonderful that Kennedy is such a loving sister.  So many people have just the opposite problem!

April, you still have very few months left for Early Intervention.  I know you're getting a "No" everywhere you turn but it will be so much easier to get help while your daughter is under three.

Although your daughter is not diagnosed with autism (and I'm not saying that she is on the spectrum)I think it's an excellent idea to call the Autism Society of America in Cincinnati.  You will be able to talk to a parent whose gone through this and I'm sure they can advise you on where to get an evaluation as fast as possible.  They'll also have lots of other local resources you probably haven't heard about.

The website is http://www.autismcincy.org/ and the email is oh-cincinnati@autismsocietyofamerica.org
Please get in touch with them and let them help you.

I want to thank you for such terrific ratings and feedback.  It means a lot to me!  I wish you and your family everything of the best.

Warmest regards,

Jene Aviram
http://www.nlconcepts.com