Friday, 11 March 2011
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Whats wrong with my Carmine?!
Carmine was difficult from the day he was born; he refused to be fed. He did not want to be held, cuddled, swaddled, etc. Instead of immediately bonding with my gorgeous little blue-eyed boy, all I could think about was, "why doesn't he love me?" As the days went on feeding time was a constant struggle! He would stiffen his tiny 7lb body and arch his back and scream, and scream. I was heartbroken, I felt as though I had already failed at being a mother. I was trying breast feeding and immediately switched to bottle when these problems continued. Didn't work, he just hated to be touched.It was almost like if he could he would've held the bottle himself! I brought Carmine to see multiple G.I. doctors (this was after his pediatrician had tried quite a few formulas), and they all said the same thing, reflux! Okay, so we tried a few meds with no improvement. Not reflux apparently. After a few months of Carmine constantly having these "tantrums" at mealtimes I decided to try baby food, he hated that too! Early intervention then started making visits to the home weekly to help Carmine with his aversions to food and to also work on his "speech" , he was 7 months old at this point and didn't make a sound! (besides screaming obviously!)
I was seriously concerned at this point because as Carmine started to crawl (he hit all his milestones besides communication appropriately) the tantrums got more intense and violent! He started to head bang, crawl backwards, stiffen himself and roll in circles, bend his body in weird positions and scream like someone was seriously hurting him! I had also noticed at this point that Carmine was very sensitive to certain clothing and touch, he seemed to have a high pain tolerance also; if he fell down and it looked like it hurt he acted oblivious, yet if he stubbed his toe he would scream bloody murder!Throughout this time I always voiced my concerns to his pediatrician who assured me that all in all Carmine was fine because he "made eye contact, and had appropriate stranger anxiety". I then took it upon myself to get Carmines name on to 2 different waiting lists to see behavioral specialists. Carmines doctor THEN referred us to see a Neurologist.
Another concern of mine at this time was Carmines 'loss of words'. He wasn't really talking but was saying "duck and cat" during his sessions with Early Intervention, and over a short time he never said those words anymore. He was saying "ma and da" but not with much meaning. He also never went through a phase where he seemed "attached to mommy", another concern of mine. I feel that me and Carmine have never bonded. When we finally saw the Neurologist (initially referred to him because Carmine twitches when falling asleep and wakes up in the middle of the night screaming) he put Carmine on the Autism Spectrum. That was the first time "Autism" crossed my mind. I actually felt relieved at the possible diagnosis knowing that we could put a label on what was going on.
But, I felt like we needed a second and third opinion and just in time, Boston Childrens Hospital called from their behaivoral clinic!! They observed Carmine and asked many questions and assured me Carmine did NOT have Autism, he had a "langugage delay" (duhhhh) and they referred us to a behavioral therapist. I can't say I was happy or disappointed in their judgement, I just felt it was a few steps back! Carmine is now 2 and every day is a battle. He started talking but he sounds like a parrot mimicking everything I say, and things that he says on his own he literally repeats about 10 times!
The tantrums are just getting worse as he is getting stronger and is constantly biting and pinching me. I try and bring him into social situations and he puts on a 'stone like' face and doesn't move for the first 30 minutes we are at a public place. He also is still loosing words and I truly think he forgets he does have words because he automatically resorts to collapsing on the floor screaming and crying at the top of his lungs. I see his potential, I know he just wants to be happy and loving but something is holding him back and I am doing everything in my power to figure out what it is.
I love my son to the moon and it is truly devastating to see him like this! ANY advice would be helpful :)
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About the Author
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- From: vsouza5683
- Name: vsouza5683
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- About Me: I am a 22 year old mother of a very challenging 2 year old, who is the absolute love of my life, Carmine James. I started noticing issues with Carmine from birth and things are just getting worse! I can see his amazing potential but something is stopping him from fully being himself and I am just a concerned mom looking for answers!!
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Comments (3)
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Forgive me if this is all stuff you've already heard and keep reaching out for help-you're a great parent and you and Carmine will keep improving your relationship. Is there a Regional Intervention Program (RIP) near you? This would give you some behavioral tools and a chance to feel less alone when Carmine has problems. From what you've said, Carmine may have sensory issues, both hypo sensitivity and hyper sensitivity - the Out of Synch Child is a helpful book. If his clothes/sounds/light/noise are hurting him, his behavior may be a reaction against that. There's also the allergy issue. You may want to get your pediatrician's help in designing a limited diet to help you find out if he has food issues triggering stomach pain and behavior. And of course, he may be on the autism spectrum after all. It's diagnosed by tests and questionnaires so it's somewhat subjective. My boy lost language at age two and did a lot of the mimicry you mention. His diagnosis is PDD-NOS. I also know a little boy who had severe sensory issues and outgrew them.
Trust yourself and love Carmine and things will get better.Hi, I suggest you try filling out the M-CHAT. It is available here: http://www.firstsigns.org/downloads/m-chat.PDF
As a speech-language pathologist, I saw many children for therapy whose symptoms sounded a lot like your son's. A language regression is a serious sign that something is not right developmentally, as you know. Also, little attachment or interaction (i.e. lack of the 'social' behavior) is another big red-flag. If a child is hypersensitive to touch, it could be a sensory integration disorder, coupled with autism.
Have you had his hearing checked? How about vision? What did his speech therapist diagnose him with? (e.g. a mixed receptive-expressive language disorder, or something having to do with cognition and language?)
Another child that I treated who was eerily similar to your son's behaviors (with the shouting and head-banging and other self-injuring behaviors) had Shaken Baby Syndrome. This condition in turn led to a whole host of behaviors which included temper tantrums, screaming fits, regression / delay of language development, poor social/pragmatic skills, and very few words or just mimiced words. The brain damage is the culprit in the case of SBS for all of the behavioral/language characteristics.