Wanting an answer but not the one currently suggested.

February 5, 2008 at 11:26 pm 4 comments

For the last week my mind has been going a million miles a minute during every waking moment.  I have struggled for a long time having this very ill feeling in my stomach about Moo Moo’s development or lack thereof.  Since the time he was about nine months old he has stayed on the border line for about half of his developmental milestones.  Never falling far enough behind to be considered delayed yet enough that I, as his mother, can tell that he isn’t where he needs to be.  I have been struggling with this a lot here recently for reasons not understood by me.  Maybe this is just our time to deal with it?  I decided to make an appointment with a doctor in his pediatrician’s office because he regular ped. is booked thru mid March.  We needed to repeat lead tests anyway since last time he was a 10 and the maximum “normal” range is 9.  (That’s something I’m sure I will post about in another entry, on another day.) 

 We arrive for said appointment and my sister in law came with to assist since we had to do an arm blood draw this time (again due to last lead test).  While doctor and I are talking about the issues going on SIL is playing with Moo Moo.  Doctor observes for a short time and says that a speech evaluation was most likely in order and it would help calm my fears.  If only he knew how wrong he was.

Yesterday we went for his speech evaluation.  He is delayed, about  8 months to be exact.  However she noticed other things going on with him, along with some questions that I answered honestly, and she is now referring him to occupational therapy for an evaluation there.  Why?  Sensory problems which could be, but not necessarily are, related to autism- however high functioning autism.

This is not what I was looking for nor what I really feel is wrong with him.  Maybe I just don’t want to accept it?  He does exhibit some (probably more than average) signs of autism but I have this deep feeling within the pit of my stomach that it is something else.  I am willing to admit that something just isn’t quite right, which DH still hasn’t wrapped his mind around, but this just doesn’t feel like the right diagnosis.

Further testing will be done in either case.  We are going to go ahead with the speech therapy and the occupational therapy evaluation.  I’ve been busy reading, researching, talking with other moms about all of this and my feelings that I am trying to face.  What if it is autism?  Will I try to cut out all the things suggested out of his diet that some people suggest are factors contributing to autism or do we just figure out how to deal and move forward?  Either way we either have a diagnosis that is difficult to deal with emotionally or we are still left wondering what is going on, so it is a slightly trying time.  We try not to let Moo Moo in on the fact that something is wrong but I know he senses it.  He  picks up on how people who he is close with are feeling at any given moment though. 

Sorry if part or all of this is mumbled all together.  That’s just how my brain has been functioning for the last couple of weeks. 

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Entry filed under: Attachment Parenting, Confessions, Moo Moo, Ramblings. Tags: , , , , , , , , , .

WINNERS!! The middle of the road

4 Comments Add your own

  • 1. alison  |  February 6, 2008 at 12:41 am

    If you feel comfortable, email me. My son has autsim. High functioning, grey area, sensory, occupational therapy, speech therapy, is 7 years old you can’t tell from looking at him no one would ever agree but on his off days, you just know it high functioning and now diagnosed autism. Please trust your mom’s instinct. That gut feeling is given to us for a reason. I knoew he was delayed at 4 months. I’m proud of you for confronting and sharing your feelings. I was there. This is not to discount your own experience, but I wept a little because I remember it all. The internet/blogoshpere can be helpful in this way to bring people together and make you feel not so confused or alone. Scott was diagnosed in 2004, and it was struggle to get doctors/people to listen, but when they saw what I knew, things fell into place. I don’t mind if you delete this long comment, I just want you to know, I understand. I truly do, and am here (alisonshwedo@yahoo.com) if you would like to talk.

    Alison

  • 2. J  |  February 6, 2008 at 2:50 am

    Hi

    I’m at a similar point with my son, as you are with yours, although my son’s been in the medical system since just before his 1st birthday (he’s now 2 1/4) when he was referred for repeated chest infections and they picked up he was delayed in sitting up unaided. So lots and lots of tests later, lots of physio (he learnt to walk a few months ago), lots of speech therapy, a psych appointment in March, on the waiting list for OT, I can tell all the professionals are leading towards an autism diagnosis (he’s also been diagnosed with hyperextension which was causing the sitting/walking problems), however something in my gut tells me it isn’t autism but it may be because in my mind I have an example of a ‘typical’ autistic child and I know my son doesn’t have some of those traits, although it has crossed my mind it might me something like aspergers. He’s on a casein free diet, this strictly speaking is because of his previously repeated chest infections (he’s had nothing but mild colds, as any child would since dropping cow’s milk), however his behaviour has improved considerably but whether that is the effect of him maturing (he’s been on the diet nearly a year) or the diet I don’t know, prior to going casein free he was an incredibly clingy anxious child, whereas now we can go into a completely strange (to him) person’s house and they’ll comment what a happy cheerful child he is, now whether that’s the diet improving his behaviour directly or whether it was the repeated bad chest infections (I know I wouldn’t be happy being that ill) making him that way I don’t know. We’ve had one lapse in the casein free diet when my husband took him out for a pizza with mozzarella on and he therefore had a massive dose of cows milk, he came down with a very heavy cold, about the same time we were trying to introduce him into a playgroup and he suddenly reverted back to very clingy, very anxious child, we had to take him out in the end but it took about six fraught weeks before he returned back to ‘normal’, I don’t know again whether this was the pizza, being ill or us trying to introduce him in a childcare setting. That period resulted in him getting the psych referral next month (when ironically he’s now ‘better’). His consultant reckons we should keep him off the cow’s milk (the discovery about cow’s milk effect on him was quite accidental, but that’s a long story) as she admits ‘it can have an effect on some children’. Anyway, good luck with your search for answers, I talk about my son’s appointments when he has them on my blog lacer.wordpress.com (inbetween talking about food and books, you can always skip those bits!).

    J.

  • 3. Se  |  February 6, 2008 at 3:57 am

    a diagnosis, however scary the image it summons in your mind, is not going to change how your child presents. you know your child, you know his behaviour, a diagnosis (or lack thereof) will not change how he is, so don’t fear it. it will probably be helpful to have the assessments and input of the different healthcare disciplines, as they have experience and advice on how your child’s behaviour can be supported and developed. you will cope with whatever comes to you.

  • 4. awalkabout  |  February 6, 2008 at 6:58 pm

    Contrary to the Autism Speaks image, that diagnosis isn’t the end of the world. You can work toward what your child can do, and do well, but having that label helps you get services you need. You can e-mail me too, if you like. Also check Autismlink.com. Cindy is awesome about helping folk with new diagnoses.

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