Sunday, March 13, 2011

Autism: A Lifelong Journey

My daughter is twenty-one now! I am glad to see there is so much more attention to this syndrome. When my daughter was diagnosed in 2000, there was not much research to pull from to assist me. Now there is enough to help families be successful in their journey. The Internet has great information, yahoo groups, forums, google, are all there to guide you in the right direction regarding services for your child.
At the time my daughter was diagnosed, we lived in a State where autism was a well known syndrome. I was a stat at home Mom, and getting her services was a full-time job! Between the private therapies and dealing with the School District, my days were full. But it paid off! She ultimately received five solid years of the therapies she needed during the correct window of time. There was speech and llanguage therapy, Occupational therapy, socialization skills, physical therapy, vision therapy, specialized dental work and counseling. We had wonderful professionals and a great "team." Today, my daughter enjoys reading, writing, artwork, and loves to advocate for herself! She still needs 24/7 adult supervision, but I am sure the early therapy she received helped her quality of life today.
Services are difficult to obtain in today's economy, but please don't give up! Networking online and off are good avenues to get the services you need. Attending workshops and conferences are a must, and I found volunteering on Advisory Boards extremely helpful.
Once you put together a great team, nothing is impossible!

Thursday, January 27, 2011

Autism and Epilepsy

Short update today. Yesterday my daughter had a sleep-deprived EEG. Tomorrow we will return to the Neurologist and get the test results. Maybe the Dr. will tweak her medications so she will feel better. The seizures she experiences cause fatigue afterward. I am doing research on autism and seizures and I will post my findings here.

Sunday, January 23, 2011

Open Invitation to Follow Our Journey with Autism

Please feel free to follow along, and read what it is like to raise a child with autism. You will read from both perspectives, as I do write from my perspective and input from my daughter. My mission is to educate both parents and their children. Autism, sometimes called, "Pervasive Developmental Disorder," is a complex syndrome which affects each child differently. There are enough similarities to write an interesting and useful blog. Many of the tips I have learned over the years came from other Moms who had children with challenges. Most of the time, a child on the autism spectrum has other challenges they are trying to juggle. Sensory Integration happens to be one of the challenges that seems to go along with an autism diagnosis.

I look forward to interacting with you, and sharing what we have learned during our twenty year journey. In turn, I hope you will share your tips and strategies. Autism is complicated, just as is getting the services needed to help our children. I would love to hear some success stories!
Thank you to Blogger for the opportunity to communicate with each other.

Autism, Sharing our Daily Ups and Downs

My daughter has requested I write about our experience with autism. She and I both feel there are many families struggling to get services for their children with challenges.
There is no "best way" to present this information, so I will go back to the beginning and write about the journey we took.
My child was not diagnosed with any challenges until she had her Pre-Kindergarten screening. We had taken her to her well check-ups, but the professionals did not have the information they have access to now. After having two other children, I knew this child was different. Many visits to the Doctor during her first five years left us without answers, and we were frustrated! Many times we were told, "She will grow out of it." Guess what? She did not grow out of it.
I was lucky, I stayed home and was available to educate myself about the therapies she needed.
Once she began Kindergarten, it was obvious she needed Special Education and related services. In order to get the services she needed, she had to qualify for  I.D.E.A.  This funding would provide her with an Individual Education Plan, tailored to the services which would help her succeed in school.

Diagnostic Summary-The beginning of an I.E.P.

The child's Individual Education Plan is molded from the Diagnostic Summary.Before any evaluations can be done, the parent must give written consent. Each child is entitled to a "Free and Appropriate Public Education.  When a child requires Special Education, the goals and objectives are written Individually on the I.E.P. by the child's team. The team is made up of a Special Education teacher, a Regular Education teacher, one or both parents, a Principal or Assistant Principal, and any professional who has contact with the child. We had the Occupational Therapist, a Speech and Language professional, a Physical Therapist, and an Advocate at most of my child's meetings. When she got older, my child attended the meetings, also.
The Diagnostic Summary is a written instrument used to guide the team with writing the child's I.E.P. There are many areas covered by the diagnostic summary. The child is evaluated in these areas before the team has a meeting to analyze the results. The areas evaluated include: vision, hearing, speech and language, fine and gross motor skills, socialization and any area which may effect educational benefit.
Although our journey began when my child was five years old, it is possible now to receive services for "Early Intervention" at age three.

Raising A Child With Autism: Preview "Autism, Sharing our Daily Ups and Downs"

Raising A Child With Autism: Preview "Autism, Sharing our Daily Ups and Downs"

Sunday, January 9, 2011

resolutions 2011

Resolutions for this year are a little different after working on them with my daughter. She would like to do more volunteer work, learn some yoga, write more short stories and poems, attend a bible study, network with other people and complete her personal list of goals. She already called and made an appointment to meet with a supervisor to assist older people with art's and craft projects. The library had a few books on beginning yoga and stretching exercises. So she is well on her way!

I have to give her a lot of credit learning to compensate with her challenges. She chose activities with her challenges in mind, and will need to explain them to the supervisor at their meeting.

We live in a small town and she has found it difficult to get past the challenges during interviews, but she is determined!
Whatever she does do, she commits herself to her promises.
Her strengths are advocacy and leadership. She would be a wonderful motivational speaker on the subject of invisible disabilities.
As we move into the new year, it will be interesting to watch how my daughter handles her new resolutions.
My money is on her success!