"Excellence is the result of the following: caring more than others think is wise, risking more than others think is safe, dreaming more than others think is practical, and expecting more than others think is possible." ~Howard Schultz
- Find support – both professional and personal.
- I do not know where we would be if it was not for the love and support of others. We have found support in our friends, realized who are true family was and have become an active member in such a wonderful community. Even on the hard days, I find joy in knowing that there are so many wonderful people in this world that love and adore my Hayden.
- Hayden does not have autism. But one of my biggest resources and largest support has come from the Arizona Autism Coalition and its members. Worth Checking Out!
- Regardless of the state that you live in, I highly recommend utilizing all resources available even if they do not fit your category perfectly.
- Here in Arizona we have a nonprofit organization called "Raising Special Kids"
- I am sure there are similar groups across other states and I am certain that if you need help finding them this group would be more than happy to help you. This group spends their time learning about services, helping parents navigate the system and providing training to families and professionals. Each week they send out an E-newsletter and each quarter they send one by mail, listing local events and activities that are friendly for special needs families.
3. Network (Practice the Golden rule)
"Do to others as you would expect others to do for you."
Things seem to always fall into place
- I have spent a lot of time in Arizona networking in the various special needs communities. Infact, 90% of my job involves this task. I have always enjoyed it on a professional level, but I would have never expected that the time spent giving to others within the community would directly benefit my son. The "chain of love" was quickly reciprocated in my life--and for that I am forever grateful!
- The networks I have created have allowed for me to lean onto others in time of need and utilize a vast array of knowledge to help my son get all that he needs.
- Recently while discouraged with a recent therapy bill, a friend (that I met through networking) posted this response: "Dollars = work = time = love... 730 units of the endless love you have for your family" --Thank you Ryan for showing me the beauty in having a child with special needs and the importance of being an active member in the community!
4. Let go of pride (apply for state assistance)
Funny that this seems so simple---This was the hardest for me.
- Shortly after Hayden was hospitalized we made a decision to short sale our house. After months of juggling medical bills, diapers, groceries etc. I decided to reach out for help. A dear friend of mine showed up at my office, pulled up a chair and said "When it is your child, there is no pride involved. You let go of what looks good vs. bad and do what is best for them."
- We tried to make ends meet, but the cost of therapy was just to high. So, we applied for Arizona Long Term Care to help better support Hayden's needs.
5. If at first your don't succeed...try, try again
- Round one of Arizona Long Term Care application has been completed. I just knew the moment I got the call that he had been denied. I politely completed my conversation with the case manager, hung up the phone and immediately called to reapply.
6. Expect the unexpected
- Turns out, Epilepsy isn't all that Hayden has going on. Since originally starting this process Hayden has been diagnosed with moderate/severe sleep apnea, Sensory Processing Disorder, Chromosome 18q21 deletion and is considered at-risk for having an Autism Spectrum Disorder.
- Once Hayden is approved through Long Term Care he will qualify for early intensive behavioral therapy to help increase his social and communication skills and decrease some of his ritualistic behaviors.
7. Use Technology
- I realize that for some, technology is not a strength! So for some of you, there will be the added step of "Learning Technology" before you can use it!
- I fall into this category. I received my first iPad in December 2010 (as a gift after having Hayden). I loved it for the calendar and notepad, but never really found out the benefits of all the iPad has to offer. I am discovering each day how beneficial this little device has been to myself and my family! Best of all, with the new icloud, everything sincs to my phone so even if I leave the device, I still have a back up!
- iPad technology can be used for an endless amount of tasks:
- Therapy
- Reinforcement
- Academics/School
- Finanaces
- Medical
- Mileage & Other important Tax information
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