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. 

 

A Parent's Perspective - JJ's Journey

Lori and Jeremy being interviewed on NBC. Scroll to the bottom for the full interview.

Today I am pleased to share Lori Ciccarelli's perspective with you. Lori is mother to Jeremy Brooks, a 23 year old young man with Autism Spectrum Disorder, who will be graduating college this year with a bachelor’s degree in Graphic Design with a concentration in Illustration and a minor in Writing.

Jeremy was inducted into an international honor society for college students with special needs.

Lori is a regular contributor to Special-Ism, a website dedicated to addressing the varied challenges within the "invisible" special needs community. Lori also created a documentary, JJ's Journey: A Journey About Autism, to share the struggles she and Jeremy have faced, as well as how they overcame many challenges. Lori is currently earning a master’s degree in Leadership and a certification in Spiritual Leadership. She would like to pursue a doctorate in Hospital Chaplaincy. Lori holds an appointed seat on the Board of Directors for the California State Council on Developmental Disabilities.

Our life in four words:

Determined. Thrive. Hopeful. Advocacy.

Four qualities I look for in a therapist:

1. Compassion: The number one quality I look for in therapists is that they can put themselves in my son’s shoes and try to understand his perspective.
2. Creative: It’s important that therapists go outside the box setting up their clients for success which may include non-traditional learning techniques as not everyone learns traditionally.
3. Experience: Because my son was diagnosed with autism a couple of decades ago, there was not much information or experienced professionals in this field. We have been the pioneers for so many situations. It’s wonderful when we can connect with therapists that already have experience with Social Cognitive Deficit Disorders.
4. Passion / drive: When a therapist is burned out or doesn’t want to work with special needs children, it is obvious and it leaks all over the place. Our kids must sense that the professionals working with them really do care and want what is best for them to thrive.

Three resources I can’t live without:

• Michelle Garcia Winner’s Social Behavior Map – a tool to help my son take the perspective of others. Typically those on the spectrum are challenged with going outside of themselves to understand the perspective of others. This tool makes it more concrete and not only helped my son connect with others, but also helped with reading comprehension placing him in the character’s shoes. I have derived Winner’s tool to use in leadership workshops when I teach on elevating Emotional Intelligence as it is all about social competence.
• The Incredible 5-point Scale by Buron and Curtis. This tool is like magic!! For those on the spectrum with low impulse control, to self regulate can be a challenge. This tool helped to make self regulating very concrete with a plan in place to help when emotions start to flare up. I also use this tool when teaching leaders on how to enhance Emotional Intelligence.
• God: I am a very spiritual person. There are so many challenges that come with raising a child with special needs. God gives me strengthen. Over the years, I prayed for patience, perseverance, compassion, and unconditional love. God wasn’t going to just hand over those qualities instead He provided opportunities for me to grow by blessing me with a special needs’ child. I am not the same person I was 25 years ago.

Jeremy participating in therapeutic horseback riding.

A few words of advice for parents raising a child on the autism spectrum:

• Remember, you are your child’s best advocate. You need to stay involved with the educational team. Remember, you have rights and so does your child. Your child has the right to a Free Appropriate Public Education (FAPE). Make sure the school is meeting the goals and objectives on the IEP. I had to call the State’s Department of Education, Special Ed a couple of times due to frustration and they reminded me that my IEP was a legal document should I need to take action.
• Be resourceful. It is unfortunate that the school districts will not inform you of all the resources available to your child because of budgets. Connect with parents that have gone this route for resources available.

Two words of advice for parents of a child newly diagnosed with an autism spectrum disorder:

Persevere. Don’t give up. There is hope. I was in denial for many years. Once I accepted my son’s diagnosis, doors started opening because I started opening those doors. When I finally realized my son didn’t need a cure and focused on tools for success, he then started to soar!! I was the obstacle in the way because I spent time looking for a cure. We are proud of who he is and how far he has come.

Jeremy, age 4.

One dream for my child:

Happiness and acceptance. The hardest part of this journey has been the bullying and the intolerance of others. I would like for my son to find his “peeps.” Everyone wants to belong and fit. I pray that he stays strong and proud of his uniqueness while finding a network of true sincere friends.

Jeremy didn't enjoy Disneyland until he was 17 years old because of experiencing sensory overload.

What I do to rest and recharge:

I love to be outside in nature walking, hiking, meditating and praying. Letting the cares of the world go!

Lori, thank you so much for stopping by and sharing your journey today! Readers, please be sure to visit Lori's website at www.autismjourney.net and to follow her posts on the Special-Ism blog. You can also follow Lori on Facebook and Twitter. Don't forget to check out this article featuring Jeremy at college.

Jeremy and Lori's television interview: 

A Parent's Perspective - Adventures in Mattyland

Today, please help me welcome Brandi, of Adventures in Mattyland. Brandi is mom to adorable, 2 year old Matthew, who has epilepsy, cerebral palsy (CP), cortical visual impairment (CVI), bilateral hearing impairment, microcephaly, and undiagnosed chromosomal abnormalities. One of Brandi's goals for 2013 is to create a blog that is an asset to other families. Brandi is well on her way to achieving that and today she is stopping by to share some of her insights gained from being a special needs mommy. Read on to learn more. 

Our life in five words:

Busy, Challenging, Blessed, Loving, Committed

Four qualities I look for in a therapist:

1. The ability to establish a good relationship with my child. A good therapist should be able to set up a relationship with a child to let them know what is expected of  them, but also make them want to come to therapy. Establish guidelines with the parents how meltdowns will be handled and communicate how therapies can also be carried out at home so there is continuity. 
2. Creativity. Be willing to step outside the norm to find what best fits the patient. After much trial and error, Matthew's therapists and I set up a plan to have him do his sessions in a darkened room with a standing bubble lamp to calm him. We have also done a lot of different therapy activities on swings and exercise balls because they help him focus better.
3. Show Discretion. If you have something negative to say about the kid, please don't say it in front of your clients. Nothing will kill a working relationship with a parent quicker than unprofessional comments about their child, even more so if you make them in front of other parents.
4. Willingness to Try New Things. We have tried a few different ACC apps on Matthew's iPad and none were a good fit for him. I found one on my own that I found that I could customize with a dark background which helped Matthew see the speech tiles better. Thankfully we have a great Speech Therapist and Occupational Therapist who co-treat and who listen to our concerns and are willing to take a chance on trying something new and different to capture Matthew's attention.

Three resources I can’t live without:

• Blogs and Support Groups. Joining the blogging community has been a lifesaver for me, both as a writer and a mother of a child with special needs. In the beginning of our journey, I had never felt so alone and isolated because we knew no one else in our situation. I was lucky to find a whole community of parents both on Facebook and through blogging who "get it." Some of my favorite blogs are Love That Max, Along Came the Bird, Bird on the Street, Team Aidan, Modified Mamas, and Mommies of Miracles.
• The iPad. The iPad was a huge game changer for Matthew in terms of therapies and communication. He has shown very little interest in conventional toys, unless it's a Hotwheel car or Mater from the Cars movies, but he gets very excited when he sees his iPad. We began using it in therapy in December 2011 and it was like a light switch flipped for him. We have a great list of apps we use with him and change frequently to help with communication, OT skills, and vision strengthening apps. It has also been a lifesaver during long appointment waits and during meltdowns because then I can play his Beatles playlist or play one of his Disney videos.
• Cozi Calendar app for iPad. This app is fantastic! My husband also has this app on his work iPad and it has saved us from a lot of scheduling problems. You can sync the calendar between multiple devices and the computer so that all of your appointments are easily accessible for everyone in the family and you can even color-code appointments for each individual family member. Cannot tell you how much we love this app! 

Two words (or more!) of advice for therapists working with children with Cerebral Palsy, Epilepsy, CVI and Hearing Impairment:

• Be flexible. What might work for a kid one week might not work the next week. Be willing to try new activities or adapting existing ones.
• Involve parents as much as possible and try to give them as input as possible. No one knows best what works for a kid than their parents and ultimately they are the ones who have to put therapies into action at home. 

A word of advice for the parents of a child newly diagnosed with Cerebral Palsy, Epilepsy, CVI and Hearing Impairment:

When your child is diagnosed, it is perfectly normal to be in denial and to mourn your idea of "normal." Your life is about to change in ways that you won't be able to comprehend. The most important thing is to build your family a village of friends, family, trusted therapists and specialists. One of the best decisions I've made since Matthew started collecting diagnoses was to open myself up and start seeking out other families who are going through similar circumstances that we are. If you're reading this and don't have people to talk to, email me and I will help you get started. 

One dream for my child:

My biggest dream is that Matthew be able to communicate with us. One of the worst feelings as a parent is seeing your child's frustration when they cannot communicate with you.

What I do to rest and recharge:

One night a week, my husband takes Matthew over to his parents’ house to hang out and gives me a night off. I use that time to read, blog, watch movies, shower and sometimes sleep. I get time off and my in-laws' get time with Matthew so it is a win-win.

Thanks so much for stopping by, Brandi! Readers, be sure to follow Matthew's adventures at www.adventuresinmattyland.blogspot.com. You can also follow along on Facebook, Twitter, and Pinterest.