The Pot calling the Kettle Black?

There was a time when I regularly passed judgement on parents who took their children out of school to take vacations. I remember believing that those parents must not value the importance of education. Their son's deer hunting experience with his father was more important than learning the basic reading, writing, and arithmetic that school offered; or that trip to Mexico was what Mom wanted, so the whole family went.

I eat my words. Who am I to judge?? I don't know the situation. What if that Father felt his teenage son slipping away into a world of drugs, and this time to reconnect saved his son? What if that Mother was just given 6 months to live because of breast cancer, and the family was taking her on the vacation of her dreams, creating beautiful memories, while living out her final wish?

Now, here I am, planning a Disney vacation for February. No, the children do NOT have off school. Not a single day off. But we are going. We are taking them out of school (input gasps here) to go on a family vacation. What could possibly be the reason? How could this be more important than the incredible education they are receiving during these formative years?

Those who know me know that I certainly value education. Having Noah, however, has taught me that there are lessons in life that are just as important, if not more so, than reading, writing, and arithmetic. Our first family vacation to Disney was in 2006. (Picture below) It was Amazing. It was Wonderful. It was Magical. And.....it was in February, when the children were scheduled to be in school.

My explanation has a lot to do with his autism. Noah has difficulty with crowds, with heat, with overstimulation, and with waiting. Disney is less crowded in February, and the temperature is in the 70's. The conditions are perfect for his needs. When Noah is doing well, the whole family is relaxed. Therefore, the conditions are perfect for the whole family. We also connected as a family while there. This is so important when there is a sibling who is neurotypical. We were in a location that provided "equal" opportunities for BOTH children.

Here is another tidbit of information. Noah's language and social skills progressed greatly during the week we spent at Disney in 2006. We had never seen such progression of skills before then, nor has any experience since then given us the same results. When we returned home, I researched that fact and found that other parents with children on the spectrum have also noted things such as "first eye contact", or "first words", or "first time she used the potty" as occuring right there at Disney.

I am trying not to get my hopes up too high, but I have already seen an increase in Noah's communication skills as he is starting to get excited about our Disney trip. He has a count down calendar, and he talks daily about the characters he wants to meet. My hope is that he experiences the same progression of skills that he had last time. After all......Disney is Magic.

Getting Past Blame

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?