New and frustrated

iVillage Member
Registered: 12-29-2006
New and frustrated
3
Tue, 09-25-2007 - 2:18pm

I know you get these posts often so I appreciate the time you take to answer each of us newbies, addressing our questions or concerns!

My daughter is three months shy of turning three years old. Since birth we have had medical and emotional concerns and various issues. She's been in and out of the ER and hospital stays for what we now think has been a repeated metabolic crisis issue for an undiagnosed metabolic disorder. Her labs are all out for genetic and metabolic testing and we'll know the results around December. At her one year well child visit, I repeated to the pediatrician what I had been saying for six months - I was concerned about her lack of attachment to me and to my husband. She seemed distant. She acted as if, even as a newborn, she was the only there was to meet her needs. Like she had to do everything herself, but couldn't. I used to try to calm her by telling her "mommy's here" and she would just scream more - as if I had to convince her and teach her that I was there to take care of her - and at 12 months, it still seemed like something we working on. We really felt like either of us (me or my husband) could leave the family that instant and she may or may not notice, but would not be affected by it emotionally. She didn't point or gesture - I couldn't figure out what she wanted ever. She cried most of the day. She had no self-soothing skills and would throw all attempts (a bunny, blanket and pacifier) out of the crib and SCREAM, make herself bleed from the gums by cutting them with her fingernails, vomit, etc. She had five words (including mama and dada) but now wasn't saying them (and didn't say them again until she was 21 months old). She didn't laugh a lot or find anything very amusing. She didn't play with her toys. She didn't play games like peek-a-boo or enjoy songs like Twinkle Little Star or Itsy Bitsy Spider...the list went on and on. The pediatrician said those things were red flags of autism, but that since my daughter made eye contact with her in the office and smiled, that she was sure that wasn't the case and that we would "wait and see." I took that thought of autism home and did some research and found that many of her symptoms were also in line with Sensory Integration Disorder (She had SEVERE sensory issues in her first year). At 13 months old, we took her to a developmental pediatrician that diagnosed her with SID and prescribed a diet of both food and supplements that I now know are commonly used with kids with autism. Because we were only getting a few hours of sleep each night (she only slept about 4 hours in a 24 hours period) and I was newly pregnant I did not have the mental energy to put forth such an extensive dietary change for sensory issues (which everyone assured me would work themselves out). We did take her to the STAR center in Colorado (where Dr. Lucy Miller is - and Dr. Miller did look at her and say she saw NO signs of autism in her) at the same time for ten days of therapy. I remember when I first looked up SID symptoms and somehow came across a list of autistic characteristics and my daughter fit into almost every single one of the 25 or so listed. I thought, "this is why it's been so difficult - it's almost like autism."

We've been doing the state's early intervention route with OT 2 times a week for almost a year now. In April, after really scary behavior following a morning at Sunday School (she DOES NOT like to be around kids her age and will not speak to kids of any age, except her baby brother), we put her on the GFCF diet just to see if it would have any effect. Within a week, she was singing songs with me, cuddling, and using one word statements to ask for something like juice or a snack. Today, five months later, she will not sing a song if someone (like me or her OT) want to sing with her. She will not gesture or point with her finger. She does not say I love you to me or her dad, even as a repeated or copied statement. She lines up all her toys or just carries them around without playing with them. At storytime in the library, she looks like a statue once the teacher starts telling stories and singing songs. She will not tell me what is wrong when she cries (which is still a lot during the day) - she just says "yea". I ask "why are you crying?" and she says "yea." I ask "what upset you?" Same response. She has no self-soothing or coping skills at all. She is attached to very little, if anything at all. She doesn't like to choose between two or three things (like food, clothes, toys, etc) and will just stop talking. Her once calm and agreeable behavior has turned into fits of complete rage, screaming, tantrums that last a half hour, etc. And we still feel like even though she has an interest in us as her parents, and knows we're her to take care of her, if one of us disappeared tomorrow, she'd notice and then move on to the new mommy or daddy.

She does really well in the evaluations. A few nice ladies come over to play with her and she shines like some genius child, scoring at the high end or above on all speech, cognitive, self help and motor skills. Her emotional and behavioral reports from me are what qualified her for therapy at all.

It's simply her emotional and social behavior (that seem to bleed into communication breakdowns/shutdowns) that have us concerned, worried, frustrated and overwhelmed. Seeing my baby boy light up with smiles and giggles when I make silly faces in the window while I pump gas and then making the same silly faces at my daughter and seeing her look at me stone faced is horrible.

We are on a waiting list to have her evaluated with the ADOS testing format and are scheduling a neurologist visit as well, but in the meantime, so many of you know what this looks like and feels like as the mom - the one that sees them all the time, so I thought I'd ask, are we barking up the wrong tree so-to-speak in looking at autism?

I love my daughter so much and would do anything to help her personality shine through in what seems like constant inner struggles to get herself heard and understood. It's not that I want it to be autism, it's just that autism information and resources are all I can relate to after all the hours and hours of research and book reading I've done. It's why I cry when I read books on autism or hear other mother's stories when they list unusual or not typically discussed signs. Autism is what makes sense when it comes to so many of the issues my daughter seems to struggle with and a name for this would help us on the really bad days when we just want to sit and cry, when trying to understand our daughter and how to help her and how to cope ourselves.

Oh my goodness, this got so long! If you got through this, thank you!!

Laura

Laura Isabella 1-4-05 Bryan 12-9-06
iVillage Member
Registered: 10-03-2004
Tue, 09-25-2007 - 10:58pm

Hi Laura,

and welcome to the board. What a trail you all have been on. And yes, I do suspect still it could be autism... But it is strange that so many professionals have said "no" - except the one where the doctor said with eye contact and smiles it couldn't be. That sounds familiar and sadly an oft repeated story for children who then later (when older) get some sort of spectrum diagnosis.

As a young child, my son had smiles, eye contact and language, he even really liked other kids, but closer to 3 he did start having strange meltdowns and his self-soothing skills got worse and worse. It was confusing to us, where he had been a very calm, happy, fun baby and child up to that point. He has been given dx of mild PDD-NOS, sorta autism and sorta not. His difficulties are real, though. He also has rather strong SID, they often go hand-in-hand. Treatment has helped him. We didn't get any spectrum dx until ds was almost 7, he is 10 now, BUT he has steadily made great progress with alot of help. He has had speech, lots of OT, small classrooms with trained teachers, counseling and now psychotheerapy and social skills groups. He has wonderful friends, lots of interests and activities, is very bright and funny, and a thoroughly charming, lovely young man if I do say so myself. Except for those times he is real difficult. But then -- as he will remind you -- he will be a teenager soon (shudder!)

A more thorough assessment may bring you more assistance with her development. Our very best information finally came when we paid p[rovately for a full neuropsych eval when he was almost 7. We also got help from our school district, university training programs, and have also paid privately for therapies not covered by our crappy insurance, which at least is tax deductible...

Good luck with everything. Stick around and let us know how things are going, this is a great place to get and give support, learn, rant and lean on each other's shoulders. Even if your daughter should turn out not to be spectrum, you are welcome here, BTW. But I have to confess she sounds like she very well could be. Many many people have had to keep pursuing a dx, and actually as a child changes, so can the dx!!

Many ((((hugs)))) to you, Good luck with everything. Just remember, no matter what is going on with your daughter, she is very very young and much can be done to help her out! What a good mommy you are, your children are very lucky to have you.

yours,

Sara

iVillage Member
Registered: 06-25-2003
Tue, 09-25-2007 - 11:14pm

Hi Laura and welcome to the board,


Well, it sounds like you have been around the houses trying to find an answer. I certainly relate. I have been handed that

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 11-15-2006
Sat, 10-20-2007 - 12:49am

Laura-


- Christina mom to-

Chloe (10)    Aiden(8)