Today starts Autism awareness month in the United States.
When the month ends, after we take down our blue porch lights, after we put away the t-shirts showing support for autism until the next event, we, as a community are left with an epic issue. Autism awareness is more than letting your neighbors know about the way your child thinks or behaves. Those things are important but there is something even more important on the horizon.
When hearing the diagnosis of autism, our souls fall to depths that cannot be measured and our hopes of what we thought would be a future for our kid, lay shattered. Autism is expensive, and usually so much effort is put into getting initial therapy, that the future isn't always addressed the way it should be. Even if you think you have a solid financial plan in place for your child, there are things you may still not have thought of.
I am honored to have as the first interview for autism awareness month an article written by Betty Lehman for the "Autism Connection" Blog. Betty has 25 years experience in her field and is a passionate and very well versed advocate. She resides in Denver, CO, has a personal experience with autism in her family and has traveled a very unique journey. Her website is www.lehmandp.com
I deeply appreciate the time she has taken to write this and I hope that you all will share this with as many people as possible.
We would do anything for our children.
We plan their day, we plan their IEP's, we plan their home activities, we plan their therapies but we also have to plan their future!
The resources and personnel for planning for the future for families with children with special needs are beginning to evolve into meaningful and mindful Opportunities.
Just like an IFSP or an IEP, the plan is best created by a team of professionals who have an understanding of how to create a specific type of plan to support the needs of the entire family, including the family members with special needs.
Families may be led to believe if they have a certain kind of trust, they have done their planning.
A trust alone, particularly if there is no plan to fund it, is not a full life care plan.
The best way to consider what is involved with a full life care plan is to ask the question, “If my spouse and I perished in a common accident last night, would everything be OK?” If not, the solution is a fully considered life care plan for your family.
The first place to start is with a Family Mission Statement. Developing a Family Mission Statement is a means of discovering and expressing your family’s values to yourselves and to others. Your values as a family are the heart and soul of a fully considered life care plan. Developing documents that do not encompass your values will not express the quality of life you wish for your children if you are no longer able to guide their lives.
The next step is developing the Letter of Intent document. Your Letter of Intent expresses what you know historically and what you desire in the future for your children in areas such as:
· Medical History and Care
· Environment Management – what is needed to feel safe
· Social and Recreation
· Trustee(s): Who will help manage taxes and money concerns?
· Advocate/Guardian: Who will look after, fight for, and be a friend to your child? Who do I trust?
Although the Letter of Intent is not a legally binding document it is truly the most valued by all who succeed you because the information:
· Gives future support personnel insight and advice about your child’s needs
· Provides directions for lawyers, trustees and guardians about your wishes
· Saves time when others know your child’s likes, dislikes, self-management techniques, talents and strengths
· Protects your child from unnecessary chaos and turmoil when they must depend upon someone other than your family for care and support
· Paves transition by giving future support personnel information they will so vitally need, like your child’s medical history
After you have completed your Family Mission Statement and your Letter of Intent, you will have a much clearer idea of how you would like to protect and grow your assets when you have a conversation with a financial advisor as well as who you would like to name as guardians and trustees when working with an attorney on trust documents.
When selecting a financial advisor, your family is best served by choosing a Chartered Special Needs Consultant (ChSNC) who has the additional training to understand the high stakes for families with loved ones with special needs. A ChSNC understands the requirement to plan for the financial needs for additional many years potentially needed to support the quality of life for a person who may not necessarily be able to fully support themselves financially, the education needs of typically developing children and retirement for the parents.
After meeting with a qualified financial advisor who is able to help you plan for the financial needs of your child, after you have retired and until your child’s own end of life, then your family will be ready to meet with an attorney. Choose an attorney who has a working relationship with your financial advisor. As mentioned above, your family’s professionals must work as a team to support you. They need to know the information each of them brings to planning, such as beneficiary designations which must be coordinated, and should never name a child or loved one with special needs as a beneficiary as this may throw that individual off public benefits.
One of the most critical aspects of a trust for a person with special needs is that it not be a “special needs” or Medicaid Payback trust if the funding is “third party” funding. Your family will likely need a Supplemental Needs Trust that can pass Medicaid’s standards and rules. Your trust needs to be able to be useful for 80 years or so, until the end of life of the person with special needs. When selecting your attorney, it is wise to ask how many Supplemental Needs Trusts they write annually. This is a niche practice and it’s best to utilize the services of an attorney who truly specializes in trusts for families with loved ones with special needs.
I specialize in supporting families to create their Mission Statement, Letter of Intent, and explaining and connecting families to public benefits and community resources with a mindfulness about the quality of life of every member of the family.
My company is Lehman Disability Planning, LLC and my website is www.lehmandp.com. Please feel free to write to me.
Planning for the future is a project that requires time, thought and professional support. A life care plan can and should be updated as often as needed as change is the only constant. Your plan will change in accordance with:
· Market performance changes
· Tax law changes
· Government benefits/services change
· Eligibility changes
· Family changes – new baby, divorce, death, marriage, inheritance
· People changes – developments, progress
Your family also needs to monitor if you are reaching your goals over time.
Although the efforts to create a fully considered life care plan are rigorous, when your planning is done to the best of your abilities, you will be able to answer the question above: “If something were to happen to me, my family will grieve, but they will be OK.” To be able to know in your heart and in reality you have created the supports others will need in your absence will bring great peace of mind to you and to the people you love.
Wednesday, April 2, 2014
Monday, March 31, 2014
Autism Awareness Month starts April 2. Time ....to connect! Warriors ...unite! I want to hear your stories, I want to know about your journey with Autism. One of of the biggest resources to handling the challenges with autism is the autism community itself! You can read book after book, but it's the hands on everyday experiences of the people we come in contact with that provide the most valuable resources. I seem to be a magnet for this, everywhere I go I connect with someone else whose child is diagnosed. Just last Thursday, just getting coffee, I struck up a conversation with the Barista and sure enough, he had a child on the spectrum. My son's story. Something was different about him the first night in the hospital. Acid reflux, vomit shooting out of his nose. Constant screaming. The nursery attendant bringing him right back in the room because none of their resources could comfort him. " He must still be hungry," she said and handed him back to me. No rest. Unusually clingy, with almost super human strength hitting physical milestones way before his time. He would scream though the night but as long as he was near me he was all smiles, started saying words, even sentences... Then....the computer rebooted itself and the smiling child was gone. Empty glances into the heavens, unbearable unhappiness. The worst moment was when I went to change his diaper in a Mc Donald's bathroom. The sensory overload was too much for him. The sounds , the temperatures. he screamed as if I was torturing him. Then, the banging on the door. " Mam, do you need help? What's going on in there?" By the age of two, a parents as teachers rep came into the home and saw it. " If he loses words," she said, " I'm giving you a form to fill out." He lost more words. He had early intervention through my state as a child with a learning delay, then by the age of 2 1/2, he was diagnosed officially by two neurologists with classic autism caused by a chromosomal duplication on 3q11.2. Since then, he has put in hours of therapy and schooling like a high school boy. He has carried in essence a full time job, while other kids his age run and play. He is a fighter, he is a leader, he is an adventurer. Those gifts, took a little boy who couldn't speak or look at you in the eye and made him the person he is today. He is rocking through kindergarten, loved by his class, leading them in their morning letter chants. His disability not only built him but it forged an advocate from a shy woman who spent most of her life just trying to keep peace. His struggles are my weapon. His communication barriers are my voice. His triumphs are my shield. His compassion is my armor. A warrior birthed, from a single diagnosis. Autism. Our story. Now....tell me yours.
Sunday, March 30, 2014
They are hungry. In fact, starving. Deprived of something essential, that they need to survive and thrive. The more children I encounter on the spectrum the more I see a common link. My son and I were fortunate. He had early intervention services through our state, and he had an EXCELLENT occupational therapist who was open about what he needed and was willing to teach me, a mother who was willing to learn. I sat through every early intervention session he had with her and I learned what I needed to do most with him, from her. She taught me how to incorporate a sensory diet into his daily life. She knew what he needed before I did. She knew that he wasn't going to be able to accomplish anything, without getting his sensory needs met first. Sensory processing disorder and Autism go hand in hand, in fact many times the diagnosis of these two disorders are mistaken for each other. They are like sisters holding hands. Sensory processing disorder can come in a couple of different forms. One form, things and experiences being too much to take in, like walking straight out of a dark theatre into a bright afternoon sun. Or two, things and experiences not being intense enough, like not being able to feel your face after getting work done in a dentist's office. Imagine either one of those scenarios going on all the time, 24/7. Imagine that feeling or lack of feeling ten fold. Imagine having thoughts but not being able to express them because that scenario makes it impossible to communicate. Imagine just trying to do your everyday activities in that state! If you can imagine, then welcome to Autism! In order for someone on the spectrum to function in a world made for nuero typical people, they have to have a sensory diet in place. This has nothing to do with nutrition but just like you would not expect someone who had not eaten for a week to be able to function well at their job, a person on the spectrum cannot function without their sensory needs being met. There are a series of different activities that are "fed" to that person during different times of the day. The activities, which can range from swinging, bouncing, pressure, etc., help calm the nuero pathways. Those activities help send messages in a more direct line and calm the person suffering from this disorder so they can function. This diet is absolutely essential to their well being, so families need to have sensory things in place at home for their children with this disorder and most importantly, it MUST be written into the child's individualized education plan ( IEP) to be exercised at different points during the day. This may not keep away every meltdown but it will certainly keep away most. In my home, I covered a balance ball with 3 different textures of fabric, so my son had the benefit of not only being able to bounce on the ball, but the access to different textures to feel as well. I also have a mini trampoline set up for him. This is all part of my living room decor. When things get too much for him, he just walks over to that spot and starts bouncing. He knows how to self regulate at the age of 6, but more importantly he has the resources he needs to self regulate, right there in our front room. He can do this without having to leave the rest of the family, it has simply become part of our lives! I once had someone text me who was in a home with a child that has not been diagnosed but most likely should have been. I was told that everyone was miserable around the child because he was melting down constantly and would not stop screaming. I texted back and said, "Go to the kitchen , NOW! Find a bag of dried out beans and pour it into the nearest big container and put it on the floor in front of him!" It was done, and it calmed him within minutes. I texted back to see how he was doing 30 minutes later. The text back stated that the child was STILL playing in the beans and he was "like a different child". He was calm and happy and he just kept playing in them. Even if you do not officially have a diagnosis for your child, you can start making a more helpful environment in your home by setting up sensory friendly activities for your child. Here is a great link about sensory diets and ideas for activities that you can set up in your home. http://sensorysmarts.com/sensory_diet_activities.html Most kids with autism IEP's have a sensory diet written into their plan but if your child does not or if your child has frequent meltdowns at school, look at this aspect of their plan and add accordingly. We wouldn't think of depriving these children of the food they need to survive, so we can't deprive them of this. Their sensory diet, is just as important!
Wednesday, March 12, 2014
Autism. The numbers get crazier everyday. 1 in 88 boys are diagnosed with it, 1 in 13 is the new number I heard today, here my state of Missouri. These are the numbers we know. This does not include the children that should be diagnosed but are unable to be because of lack of knowledge or road blocks in the system that have kept them from getting the help they need. This does not include those who need help but can't because families are in denial. The questions surrounding autism, are not always, "What is it?" Trailblazers and the sheer volume of our young society getting this diagnosis have brought great awareness to this disorder. Most of our population around the globe have at least heard of it and most of us know it firsthand. This isn't something that can be hidden anymore. But once you know it or suspect it, what do you do? Early intervention is key to dealing with this disorder, and I say disorder not disability because I have seen some amazingly able beings that happen to be autistic. My son's abilities frequently blow my mind, but the every day things he can't do but should be able to do for his age, are heartbreaking. I was fortunate enough to attend a meeting today to help the disabled in my area. After the meeting, a few of us stayed to go into depth about Autism. The questioned was posed. " How do we educate our community on how to navigate the special education system to help our kids, without alienating the school district and making it impossible for others who follow us?" This... Is no small question. Though the school systems sometimes are dreadful and we hear horror stories on the news and even from other mothers whose children have experienced horrific events through their school districts, in general the people working in special education are in it not for money, they are in it to make a difference. They are there because they understand it, and most of them have family members who are effected with a disability. Their limitations come through funding, and the services are only as good as the written individualized education plan ( IEP) . If you as a parent can't or don't get a good IEP in place, then everyone involved, not just your kid is at a disadvantage. Therapists and teachers follow the IEP, and though most do go above and beyond, they still have to follow what is written. That is your plan for your child, it is also the unit by which progress is measured through the school district. Since I moved back in July for personal reasons, I have been in conversation with many mothers all who have a similar story. There is an Autism connection. Most of them suspect and know in their hearts, but have hit road blocks with the system and don't know what to do for their kids. I decided, there is something I can do. I decided to write this blog. On it, I will start with basic things like stories of how I navigated the system with my little boy and how I'm still navigating. I'm planning on interviewing different people and posting those interviews so you, as a viewer can see what has worked with their families. Hopefully, even interviews with therapists. I'm going to tackle everything from sensory activities to do at home with your child to what to do when the evaluations come back as "OK" when you know NOTHING is "OK". This blog will morph frequently, and in no way is it intended to tell you how to live your life with your child with Autism, but it is here to share stories of what has worked with my family and with others and you can take that information and apply it as you feel best. Autism can make everyone, those who are diagnosed and those who are effected by that diagnosis, feel like they are all alone. The more people I meet, the more I break away from silence and speak candidly, the more I learn... We ALL have an "Autism Connection".