Friday, April 11, 2014

Journey Through Autism, Continues

By the time Jade was five, we were knee deep in her daily therapy sessions, weekly dance and gymnastic classes. We had found the best selection of therapists that responded with her and she was making progress.

One of the struggles we faced was our fight against medicating her. Every doctor we had seen had tried to force to put her on the normal "autism medication cocktail" right after her official diagnosis. This was not an option to me, as at the age of two, I refused to try the medications first. Our next option was dietary.

Our next stop was to see an allergy/GI specialist because she still not growing or gaining weight. At the age of 5, she was still in 2t clothing. After allergy testing we discovered she had many food allergies. With this in mind we placed her on an elimination diet, carefully controlled her food, and made everything from scratch.

Once the "offending" foods for her body had been eliminated, and her system cleansed, her body slowly started growing and gaining weight.

Additionally, during this time, we began teaching her sign language. Implemented PEC's (or Picture Exchange Communication System) in the house, labeled EVERY with the word and picture of the sign, and learned a new way to communicate.

During this time she was in therapy, we rarely heard a word come from her mouth. Jade communicated best with noises, fits, screams, crying, and melt downs. Learning how to handle her melt downs and sensory issues was important for the family and her safety.

Two key comments I remember making to Jade that helped me realize her thinking pattern were "sit down and plant your feet" and "knock it off." When she was told to plant her feet, she did just that. After looking for her I found her out side looking lost and confused with her feet buried in the dirt. After being told to "knock it off" (some behavior) she went running to her room, grabbed all her blocks. Came running giggling with her shirt stuffed. Very carefully, Jade lined up all her wooden blocks on the back of the couch, then proceeded to hit them as hard as she could across the room.

Once I told her (without realizing what I was doing), to "knock it off", so she did just that. Lined her blocks up once again, and knocked her blocks off the back of couch. She did this over and over until I took her blocks, resulting in another fit. She was confused and lost. Why? She was doing exactly as I had just told her to do several times in a row.

Suddenly realizing what was going on I tried to get her playing with her blocks in a different fashion. This was not going to happen. She dead set on following my instructions. At this point, I simply bit my lips and let her "knock it off" until she was finished.

With this realization, I was finally able to reach out to her and peek inside her boxed up world. We were finally able to start experimenting as a family with new ways to try bond, stop her temper fits, increase communication skills, and learn new things about her.

During this time, I learned to accept the fact that a child with autism is just that. A child with autism and perfect as they are. I also became to see the world of autism like that of a remote controlled toy.

Some remote controlled toys are only programmed to move forwards and back, others can also move side to side. While others have no limitations in their movements. Why children with autism are not wired to think and behave like other child is something we may never know. However, I know my daughter has overcome so many obstacles in her life to become who she is.

I also know that because of who she is, and what she has become, she can and will become whatever she puts her mind to.

Monday, April 7, 2014

Continuing on with our journey through autism.

After Jade was officially diagnosed with the 299 autism diagnosis, many new doors that I had no idea were available opened up for her.

During this time we lived in AZ and there was a special program designed specifically for autistic children in the early intervention program. This program offered state funding for hours each week of therapy. When I say hours I mean hours. Her therapy was basically a full time job.

She continued the physical, occupational, feeding, and speech therapies. Then in addition, she started receiving community support, ABA (applied behavior analysis), sacrocranial, and behavior modification. Basically, if there was anything that might help these children with developing skills they were given the therapy hours.

We told to put her in dance and gymnastics as well for additional therapies as they would work both fine and gross motor skills and offer even more therapy hours without her realizing it.

Her comprehensive team came to the house for the first meeting and we sat and developed her FSP or family service plan. Basically, what skills did she need to function and how would we great those needed skills into goals. Next, how would we break those goals into achievable steps for her. Finally, what role would each therapist play, and how would they use us as a family and team with the therapists to help her learn what was needed. Seems simple? Well not as simple as it seems. Especially when your child is not hitting any of the needed mile markers needed.

Finally we had a plan in place and started working with her team. The first few months were difficult as we had to weed though the therapists to find the right match for Jade. Not every therapists had the personality to work with her. Many she simply shut out and refused to work with. This had been explained as normal and that we would have to sift through their therapists until the right team was in place and they were used to moving until they found the right kids.

This was not an easy time for the family. Everyday Monday-Saturday we had therapists in and out the home. We had very little private family time. The therapists pulled Celidah in and taught her how to play with her sister. They brought in neighborhood kids, and they played with the girls. In time, the therapy sessions became neighborhood play times.

Learning to play was very important. Why? Well, children learn through play. They explore their world through play. In time, the things they learn from play develop their adult abilities and how they cope. It was through all this "play time" that Jade eventually started coming out of her shell and trying new things.

We created social story videos for the girls. They learned how to answer the door, make beds, play kid games, and many other things by staring in their own movies. They loved watching these movies and sharing them with their friends. Most important, Jade started responding correctly in some situations because of her movies.