When The Going Gets Tough

You HAVE to be tougher than they are. Today we had our first session with Seraphina's behaviorist from the district. After nearly 4 months in school I was able to get services through the district for in home therapy. She needed it. I needed it. In the past 4 months I have read books upon books, tried strategy after strategy AND attended my own ABA (applied behavior analysis) training. Its been a whirlwind...all while trying to maintain my marriage, raising another 4 kids, coaching (which I loved) and volunteering (when I can) oh yeah, and I attempt to have a Brownie Troop too.

Today however when the doorbell rang, I knew our life was about to change. I had heard so many good things about Miss Bonnie and here she was at my home. Seraphina excitedly answered the door and realizing it was NOT a child and it was an adult who would place demands on her she quickly ran off to find the nearest corner behind a table. Seraphina escapes work. She dislikes demands placed on her and is considered "self-directed" (a nice way of saying--your kid won't do anything for us).

Recently her teachers and aides have been sharing little tidbits of her new behaviors and learned skills at school. I think my response disappointed them. These new behaviors weren't new at all and those learned skills she did all the time at home. How could I get them to see her potential and what she could really do? I had no way of sharing it with them....until today.

Today, we began to work and though we chatted for a bit we got down to business doing on of Seraphina's favorite things, "tacting". She is able to look at a number of photos and identify them. Often she will use them in a sentence or elaborate. Without knowing what I was doing, I was adding in some intraverbals as I continued the sequence identifying traits of animals and verbs that she was tacting. It seemed to be working and the behaviorist gave tips on how to grow her vocabulary and abilities. I was excited.

Then Seraphina began to get bored or tired or maybe both. She seemed to shut down and those once well liked treats were nothing of interest to her. Still we had work to do. We had 2 hours of therapy and I was going to make every minute count. Luckily her therapist agreed. We began to demand she work on some things she isn't so fond of (read anything she doesn't choose) and we sat trying to get her to pay attention.

Seraphina WAS making eye contact however she wasn't going to play our game. Finally I had to hold her. She flailed in my lap as I tried to help her hand over hand to complete one task. After 2 or 3 questions or demands she was given a treat all while flailing and yelling in my ear. Finally she asked for her blanket. This weighted blanket she sometimes seems to have no use for was finally coming to mind when she needed comfort. I grabbed that and though it calmed her for a bit but when we asked her to begin again we had the same issue.

For some parents, seeing their child wail and sob this is a challenge. For other parents its something they cannot tolerate. I was that parent that couldn't and I didn't and that is why we are where we are today. About three months ago I made the decision that I wanted her to learn. I wanted her to succeed. I wanted her to be as typical as she possibly could and to do that it meant I had to follow protocol and dig my heels in further than she could dig hers. Today was one of those days when she tried me. I used to have no patience...now I do. Today was one of the days when I wished it was easy for her but it was also one of those days when I was reminded how I had to get on board with all her therapies so that she could succeed and reach her full potential.

Tonight I headed to Pennsylvania where I have been taking those ABA classes I mentioned. I have grown to love the opportunity to learn with individuals who work as therapists and I think some may have learned something about being a parent of a special needs child. I learned more about saying "YES" to the difficult moments and reaching down deep to give our children the best possible chance.

My advice to any parent with a new autism diagnosis is to understand we owe it to ourselves to give this our all and sometimes our all means being tougher than they are to teach.


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