Wednesday, March 20, 2013

A Parent's Perspective - Sailing Autistic Seas




A Parent's Perspective is back and today I'd like to welcome Miz Kp of Sailing Autistic Seas. Miz Kp is mom to 5 year old Angel who is on the autism spectrum. Miz Kp's passion is learning everything she can about autism and sharing it with others. In addition to her blog on autism, Miz Kp also maintains a list of Angel's Top Five Autism Apps, a support and special education resource list, and a list of events and seminars that may be helpful to parents of children with special needs. I'm so happy Miz Kp is taking the time to stop by and share some of her knowledge with my readers today. Read on for Miz Kp's perspective!

 

Our life in five words:

Determined, Motivated, Hectic, and Blessed

 

Four qualities I look for in a therapist:

  • Patient: Angel needs a therapist who is patient and who can take the time to understand his unique needs.
  • Communicates: I am a communicator by nature, so I really appreciate it when therapists keep the lines of communication open with me as I try to do with them. I am open to e-mailing, phone calls and writing in Angel’s communication book.  
  • Innovative: I like therapists who are full of ideas. These ideas can include activities to do with Angel at home and even tips to encourage speech. An example of this is his new OT just gave us a list of sensory-based activities to do with Angel at home. 
  • Invested: A therapist who is enthusiastic about Angel’s progress is a blessing. This means that this therapist understands his autism diagnosis and how it can manifest itself in various situations. This therapist is committed to Angel’s success and is willing to embrace what will work for him and discard what is not working. This therapist will accept the fact that Angel has sensory needs and he/she will incorporate this knowledge into his sessions.

 

Three resources I can’t live without:

  1. Wrightslaw.com: This is my go-to web site when I am preparing for an IEP meeting. Their book FromEmotions to Advocacy has been a great resource. They have a wealth of information available to parents and advocates as we try to advocate the special education system.
  2. Support System: My support system has helped me cope with a rollercoaster of emotions since Angel was diagnosed with autism a little over a year ago.  I have gotten support from family members, friends, support groups, professionals, and even people on social media. Web sites like Facebook, Twitter, and Pinterest have been very resourceful for me and have allowed me to connect with other parents in a way I could not before. One of my favorite Pinterest pages that every parent of a child with autism should check out is Autism Parents on Pinterest.
  3. iPad: Angel got his iPad as a gift from his Grandnana. It has been a great addition to our household. He has learned a lot exploring the apps and children’s videos on YouTube. There are so many apps for children with autism and we are continuing to explore as many as we can.  

Two words (or more!) of advice for therapists working with children with autism:

  • Our children may have the same autism diagnosis but there are still things that make each one unique. Please try to get to know my son.
  • I like detailed progress reports and well -developed IEP goals. It shows that you really took the time to get to know my son and have a vested interest in his progress and development. 


A word of advice for the parents of a child newly diagnosed with autism:


Crying is okay. You are mourning the loss of a dream you had for your child. However as you cry, remember that your child is still the wonderful person that you knew before his or her diagnosis. Some days will be easy and some days will be hard. Keep in mind that everything you do for your child will benefit them now and in the long run. Also reach out to your support network. If you do not have one then build one. For example: Join a support group or you can even reach out to others via social media. It is priceless to find another parent who totally gets it. 

One dream for my child: 

I dream that Angel will develop the cognitive, academic, and daily living skills to live as independently as possible when he grows up.  I know this is a second dream but I have to get it in. I dream that my son will grow up in a world that understand and accept him as he is. 

What I do to rest and recharge: 

I love to read. There is a nothing like a good book to take my mind off things when needed. On the rare occasion that I can take a nap, I enjoy those also. I enjoy socializing with friends and family when I can. I also love to travel and try to squeeze a trip in at least once a year. 
  
Thanks so much for stopping by Miz Kp! Readers be sure to check out her blog and website, Sailing Autistic Seas at www.sailingautisticseas.com. You can also follow Miz Kp and Angel on Facebook, Twitter, and Pinterest
 

4 comments:

  1. Thanks for giving me the space to share my thoughts with others.

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  2. Thanks for sharing your words! It's clear when a therapist doesn't have your child's best interests in mind. I had to deal with a therapist who wasn't giving my son the attention he needed, and it was so frustrating. Thankfully, he now has three therapists who care very much about his progress and want to see him succeed. They are consistently keeping me informed of his progress, activities I can do at home and what I can do to better navigate the system. It's great that the OT Angel has now is doing those things for your family. As for your dream, I dream of a world where everyone is accepted the way they are too.

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  3. Thank you Xiomara. I am glad that your son is getting the therapy that he needs. It makes a big difference when they are engaged with us.

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  4. Thanks for sharing! That is some great advice! We too have found the iPad to be an asset.

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