Special needs families need extra help

Get the assistance your family needs with these helpful links, which cover a wide range of support topics

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Government Links

SSI, ABLE Accounts, IHSS and Guardianship/Conservator links and information

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Help Resources

Finding physical help with behaviors, nutrition and caregiving information

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School Links

Educational links that have been submitted to us – great for parents considering alternate schooling methods

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Dietary Links

Gut issues play a huge part in problematic autism symptoms. Find links about nutrition and GFCF diet in this section

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Natural Health Links

Find high quality supplement providers as well as alternative health professionals – many of whom work over distance

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Miscellaneous Links

Everything else. Work from home opportunities, CDC, Estate planning and other autism support links

Government Links

Our list starts with government support links. Many families need financial support as our kids grow. All kids will become adults and many can eventually benefit from SSI benefits and an ABLE account and in some cases, conservatorship.

  • IHSS (In Home Support Services)
    One of the biggest problems parents face. when caring for a special needs child, is balancing working for pay against working for family. In states that accepted the MediCaid Expansion with Obamacare (blue states, mostly), some form of IHSS is available to help families, where 1 parent can’t work for having to care for a special needs child. It is income driven and they pay you from the day you call, so it is important to do this asap.

    In California, and a few other states, they will pay a parent or someone else to provide IHSS for a child. In other states, they will pay anyone but the parent, encouraging the parent to work outside of the home while another person (could be a relative, friend or program provided) who you train, takes care of things at home. Each state is different, so it is important to Google “Apply for IHSS in ____” and put your state name in the blank. This started off as an elder benefit that was expanded to special needs kid, so don’t shy away if you see elder info. Call them and ask for info about special needs kids.

    If your state does not offer this benefit, you might want to call your Congressmen (call (202) 224-3121 for the U.S. Legislature switchboard operator) and ask them what community assistance programs are in place instead.
  • Social Security
    Many of our children will qualify for supplemental monthly income from Social Security. This activates MediCaid, too, it seems to me. Some say it is hard to qualify – it was not hard for us, as my girl is severely autistic and a very happy, flappy girl, so it is easy to see that she qualifies. It did take a long time, however, but they paid us retroactively to the date that we called, which was a great lump sum that helped us out a lot. Yes, there are some families that need to appeal the decision or get a lawyer, but that is not everyone.
  • ABLE Accounts
    If your child qualifies for SSI benefits, you will find that you can have a maximum of $2,000 in the bank as the parent before they are 18 or the child after they turn 18. For parents who want to put some money away for the long term care of their SSI recipient, they can not open an ABLE account, which allows you to save up to $100,000 for your child. You can not deposit more than $15,000 in any given year, but you can start it with as little as $25. SSI told me it needs to be started before the child is 21 for maximum benefit. ABLEnow.com is the only place to go to start an ABLE account – anyone else offering is offering to act as your agent with ABLEnow, it seems to me.
  • Conservatorship
    Many special needs kids will always require extra help to get through life and for many of them, that will include Conservatorship. I was told Guardianship is when the person is a child – Conservatorship conserves the rights of an adult. Filing the documents with the court can be overwhelming for people to do by themselves, and it pays to go to any free seminar on the subject that you see in your area. I think I went to my first one when my girl was 16.

    Filing for conservatorship can be costly – it is worth it to wait until the child is 18, so the court costs are based upon their income, instead of yours. It is important for getting medical treatment for our kids, especially away from home, and to protect their financial interests and rights. I was told a story where an underhanded caregiver took someone’s child to the bank and had the child sign for a line of credit – then the caregiver took the money and was never heard from again. A non-conserved child would have that debt forever, but with a conservatorship, the transaction would be null and void, I was told.

    Talk to a lawyer or go to a seminar to learn the facts in your area – and see if you can find a paralegal to help you submit the documents to the court. In CA, we can call the Bar Association and get connected with a lawyer for a 1 hour consultation for just $50. We also found a DIY document submission service, run by a paralegal, and we spent just $800 instead of the $1500 – $3,000 some of our friends paid. The above link is powered by probono.net, which implies low or no cost, but we have not used these services.

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Help Resources

It is hard to provide links for every state, but we all need physical help now and again. Here are some ideas that have helped us a lot. I have included links where I can.

  • Respite Care
    Being a special needs parent is hard, as it is 24/7 of emotionally, physically and mentally draining work. It is too easy to get burned out – and many of us do not have friends or family that feel comfortable taking responsibility for special needs kids. Respite care is available – sometimes for free – in many states. You train someone to know how to care for your child, who can fill in when you need to do something for another child or when you just need time out.

    Search on line, consult the blue pages of your phone book or contact your local congressman to learn more about the community supports in place for special needs families. We might also find help an support with larger agencies like Care.com which has folks available nationally.
  • Behaviorists
    A behaviorist is a person who can come to your home, at any time of the day or night (very often), to observe a problem and help with strategies to remedy it. We talked to a behaviorist about hand washing, temper tantrums, etc. Some states provide them (California often does through the Regional Centers). Some states will require you get a referral from your doctor.
  • Autism Speaks
    This is a very popular Autism Organization – one of the first Autism Support organizations – no list would be complete without it. There has been some controversy over this organization, due to the lack of autistic leaders in the organization, but this has long been an important resource for families and it bears checking out, like the Doug Flutie Foundation, Autism Society, and Jon Stewart supported NEXT for Autism. These types of organizations offer information as well as grants that can help families living with autism.
  • Community is so very important
    In our way of life it is so important to connect with others. There are a lot of wonderful support groups and blogs out there. On Facebook, my favorites blogs are Autism with a Side of Fries, Autism Mothers, Maddox’s Autism Chronicles and Autism Dad. There are some good Autism Support pages on Facebook, too, where you can ask other parents questions, get advice, vent and offer your own solutions. Please also check out and Like our Facebook page, where we post product links, advice and supportive content for those on the autism journey.

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School Links

These links have been submitted to us. While I have not used these links, I think they could be very helpful, particularly for those looking for an alternative school situation.

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Dietary Links

I got a lot out of a GFCF diet for my kids and I had a hard time finding resources that worked for us, so I share these for those on a similar path.

  • Nutritionists
    We worked with a wonderful nutritionists through our local autism support center, through the local children’s hospital and our community health center. Your school program might give you access to a nutitionist also – one who can provide recipes and encouragement in your quest toward better nutrition, GFCF or not. I urge you to search for such resources in your area and to take advantage of them. There is a lot of help and support out there.
  • GlutenFreeGirl.com
    As seen in the NY Times. Recommended by a friend as a terrific resource for a gluten free diet.
  • CuterThanGluten.com
    I know Dawn from another line of work, but I was delighted to see that she is doing GFCF, too. Her web site is full of recipes for all members of the family – with really fun things for kids. She is a wonderful person with great ideas that she learned for her kids.
  • Betty Crocker Gluten Free Recipes
    I was really surprised to see how many gluten free recipes Betty Crocker offers on their web site. It just goes to show you how widespread and widely accepted the gluten free diet has become.
  • I have some herbal recommendations that help with nutrition and digestion, too. The best one is Inositol – a recommendation from our Integrative Specialist at UCSF, that helped my child overcome sensory issues and OCD trying new foods, which helped us to dramatically expand her limited autism menu of acceptable foods. Learn more here…

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Natural Health Links

I share a wealth of Natural Health information – these are links to supplement providers as well as alternative health professionals that we love and have helped us so much on our autism journey. We also have tips to help kids take their medicine and so much more in our natural health resources web site.

High Quality Supplements
Too often people go for what is handy or cheap instead of finding suppliers that know what part of the plant to use and only accept high quality ingredients. These are my recommendations for high quality supplements.

  • Nature’s Sunshine Products
    I use a lot of Nature’s Sunshine Products (and have for more than 20 years) because I know they are high quality herbs. Nature’s Sunshine (NSP) supports educating people in the use of herbs and I know they have the highest quality and are using the effective part of the plant (unlike a lot of discount brands). NSP is largely an on-line company and they ship anywhere (so these products are available to everyone) and they offer discounts for membership (order $40 worth of product and get free membership). Sign up under me and you will have Ralph and Lahni DeAmicis, as email or phone support for any questions you may have.
  • iHerb
    I love iHerb as they have a wonderful web site for online ordering and a large selection of natural supplements from my favorite brands – like Gaia, HerbPharm, WishGarden, Jarrow, Source Naturals and more.

Alternative Health Practitioners
When my eldest daughter had full spinal fusion surgery, a friend ridiculed me for mentioning to the surgeon that we worked with a psychic during recovery from home. I later went back and apologized to the surgeon if he thought that was silly and he said “If I was in your shoes, I would probably to the very same things!” which is what inspires me to share this list with you.

  • Ralph & Lahni De Amicis
    Just about everything that I have learned about health and healing has come from my parents, Ralph and Lahni, who are long time herbalists and are trained as naturopathic physicians. They are also fluent in Spanish, German, Italian and French. You can contact them and learn more about them at their web site.
  • Keala Gerhard
    Keala uses her own special blend of Hawaiian healing art, combined with Reconnective Healing and her own magical wonderfulness. She worked for many years as a pharmacist in her native Germany, before spending so many years learning and working in Hawaii – her knowledge is vast and expansive and she is kind and sensitive, with a unique connection to those she works with. Her distant healing techniques and trauma erasing have done a world of good for me and my family – most importantly, she has been a partner in health with us for many years and that has been wonderful and very valuable. You can learn more about her on Facebook, but it is best to contact her through her web site, by phone.
  • Jeanette Wolf, ND
    This wonderful woman is magical, in my opinion. Her psychic abilities, wonderful treatments and supports along with her years of experience with autism and special needs helped to get us through spinal fusion surgery comfortably and sanely. She studied with my parents to achieve her Naturopathic Phyisician’s qualification and I love to connect with her on Facebook.
  • Byonetics
    I just can’t say enough good things about Jean Genet and his Byonetics CDs. As one of the first “vaccine injured” children, decades agao, he has gone on to help many parents and children dealing with autism with a great support group and effective sort of subliminal CDs. I think his information is so important, I have started a small section of things he has put out that I would like to share with you here.
  • Harriet Sklar
    Harriet is a long time family friend and advisor. She does a blend of psychic and medium work with a touch of astrology, which gives her counsel a great deal of insight. She is a lovely compassionate woman and I find it easiest to connect with her on Facebook.
  • Eloheim and Veronica Torres
    When working with a non verbal child, it helps to be open to psychic and even magical assistance. Veronica channels Eloheim – I was lucky enough to meet them live in my community. Working with Veronica changed the way I looked at my relationship with my child and it really marked the beginning of the healing process for me, as before talking to her, I was very stuck in grief and despair.
  • Acupuncture
    My non-verbal, severely autistic daughter deals with migraines associated with her cycle and I thought an acupuncture treatment with suction cups might help and be tolerable. I was shocked to see how readily she accepted not only cups, but needles, too. With the right practitioner and a slow and comfortable introduction, I think anything is possible – particularly if it works. Many insurances will cover acupuncture for pain, primarily. Even MediCal pays for 2 visits a month, though it can be hard to find a practioner who takes MediCal – ours retired.
  • Feldenkrais
    Just before spinal fusion surgery we worked with a wonderful practioner, names Margot Schaal and Iris very much enjoyed the sessions. Much like a massage, Iris would lay on the table while Margot moved her arms and legs. We could see her gain 1/4 to 1/2 and inch in height in each treatment and thought for sure we were positively affecting the scoliosis, but that did not turn out to be the case, however I am sure we helped her be more comfortable while she waited for the surgery.
  • Chiropractic
    I was raised on chiropractic care – when we got a cold, we went to the chiro, because great health is easy when the spine is aligned and free of subluxations. My kids each saw the chiropractor within a few days of being born and we have all seen a variety of chiropractors over the years. Currently we work with a neurological chiropractor – a chiropractor with a certification as a functional neurologist. Dr. Robert even has a special needs son, himself, which makes him very knowledgeable about what we deal with, as a family and caregivers to our girl. With evening and weekend hours, he is a wonderful partner in health for us and I recommend chiropractic care for anything and everything. If he can’t help us, he will direct us to who can. He also invites anyone to contact him to find a good chiropractor in you area.
  • Reiki
    In response to autism in my family, I started doing Reiki, with great success for some. I have a friend who asks me to help with her migraines with consistent success. I think that it helps with my daughter, though that is harder to measure with no verbal feedback. If you are interested in Reiki healing energy, please contact me. I am even learning to do it over distances, and would love people to work with, so don’t hesitate to contact me.
  • Yoga
    Getting kids involved in yoga early can be one of the best things we can do for them. Flexibility, calm and community all come from great local children’s yoga classes – and if you do not have one in your location, YouTube is full of videos for kids and parents alike. Being a special needs parent is not easy and yoga can give us the calm and strength we need to do a good job without losing ourselves. Here is the first one that came up for me when I searched YouTube for “children’s yoga.”
  • Home Medical Test Kits
    We’ve had a very difficult time getting Iris to doctors – and when we did get her there, the doctors very often had a difficult time handling us – so I have found these home medical tests to be very helpful. Non-invasive tests that I can perform at home to monitor my child’s health was a real blessing. The brand we used is no longer available, but there are several options on line and at Amazon.
  • The Care and Keeping of Me / Guy Stuff Books
    The American Girl coming of age books (for boys or girls) are the best for gently introducing kids to their changin bodies. If your child reads, you can just put it down next to them – their natural curiosity will lead them. If your child does not yet read, you can look at the pictures or look for issues that your child is dealing with. It is wonderful when my girl realizes that what I am trying to show her is useful and she engages a bit more.

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Miscellaneous Links

These are links that have been provided to me by friends and clients as resources an autism parent or caregiver might appreciate. I have not used them myself, except where specifically mentioned.

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Autism Awareness
items from our Zazzle Store

Wearable Autism Awareness items can reduce the number of inquiring strangers and they alert others that you need extra time or assistance out in the world. We also love autism awareness holiday t-shirts, which help my girl to comfortably participating each year – for years one of our Halloween t-shirts was all the costume she could tolerate. We have partnered with Zazzle to create and offer a wide variety of autism awareness items. You can customize our products or even make your own items at Zazzle.com

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