This past Fall we took Noah to see a pediatric psychiatrist. I wanted to know more about medications. I needed reassurance that we are doing the best we can for Noah. The psychiatrist was complimentary, and reassuring. She also described different psychotropic drugs, how they work, the benefits, and the side effects. She shared our concern about the side effects of the Risperdal (weight gain mainly in the tummy). She also had a PLAN. This was what impressed us the most. She had ideas of when to increase and when to decrease the medication in order to manage the side effects. She also introduced another medication with less side effects. We left her office with smiles on our faces and new hope.
The new medication (Intuniv) worked well at 1 mg. We then increased it to 2 mg after two weeks, as planned. At that time, Noah's self-abusive behavior increased. He was hitting his head (HARD - it was painful to watch), pinching and scratching himself, hitting his hand against walls, and had an angry tone in his voice. We decided, without consulting the psychiatrist, to decrease the medication to 1 mg again. The self-abusive behavior decreased immediately. We felt good about our decision.
Last month we saw the psychiatrist again. I did not leave this appointment with a smile. I left with guilt and regret. The psychiatrist gently scolded us for stopping the medication she recommended. Evidently, there is a period of time when the body will resist the new medication. We needed to wait FOUR WEEKS to see the benefit. I could not bear to watch my child in such pain for a week. Now I am being asked to watch this for what may be up to a 4 week time frame?
She also looked right at me and stated, "You are a therapist, right?" She then went on to say that I would not be recommending to other parents what I am doing in my own home. She stated that Noah's anxiety is a mirror reflection of his Mother's anxiety. She said, "You need to stop being a Mother, and start being a therapist." OUCH! The main reason I have hired therapists in my home is so that I can concentrate on being Noah's MOTHER, not his therapist! I have been contemplating her comment for an entire month. I go between feeling hurt, insulted, and guilty to being angry with her statement.
Are there other mothers of children with ASD out there who feel like they need to be more of a therapist than a mother? How do you balance these two roles without feeling guilt?
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I know you, Kim, and I know Noah. I am a parent with a child on the spectrum although a lot less severe than Noah. I, too, am a therapist. I believe that parents with children on the spectrum need to be parents. We need to advocate for what we feel in our hearts is right for our children. Go with your heart not with your head. Remember, psychiatrists are also people who can make mistakes, too. They do NOT have all the answers.
Most of all, Kim, be who you are. You are a fantastic mother for Noah and Hannah.
The doctor is right about your anxiety, however. You and Brian need to address your own anxieties, feelings of depression, and other aspects of your personality that are less than optimal right now into better health and balance.
I say these things out of love for you and your family.
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