Monthly Archives: March 2014

Autism is hard in the U.S and developed countries, can you imagine in developing and third world countries. It is excruciatingly difficult. This is why United Nations created World Autism Awareness Day (WAAD) on April 2nd which is just around the corner.

I was invited to speak there last year by Jacqueline, an autism mom originally from Argentina. Jacqueline and her husband were the pioneers behind the creation of WAAD. As a result of that event in 2013, I’ve met one extraordinary young American Woman who is Jewish descent – Melissa Diamond. And just like her last name, Melissa has been a diamond for autism parents in Jenin, West Bank, Palestine. Think about that for a minute.

A Jewish American woman helping Muslim Palestinian Autism Parents. And, they say there can’t be peace in the Middle East. Maybe if Secretary Kerry chatted with Diamond, she could help him.

Anyway, Melissa is now in Jenin where she blogs from and posts information on her Facebook page. She and her team are helping, educating and empowering Palestinian autism parents. They are teaching them behavior therapy, how to get resources and services for their children. Melissa started Global Voice For Autism which can do therapy through SKYPE for parents.

I am simply amazed and encouraged that this world which sometimes can be cold and cruel is still warm and welcoming because people like Melissa exist.

Melissa will be speaking at the U.N Autism event this year and was just invited by my good friend Jacqueline. I can’t wait to hear her inspiring ideas and creative ways to bridge the autism gap worldwide.

Autism – while it can affect some ethnic groups more or less and vary in severity, for the most part has no borders, color, race or ethnicity. It can hit you like a brick in your heart if you are not prepared for it. Unfortunately, while I think and often complain this country’s services – most of the world is light years behind.

In sum, let’s help all autism families and all autistic individuals irrespective of where they are from or live.

If you are an ABA (applied behavior analysis), SLP (Speech & Language Pathologist), OT (Occupational Therapist), Special education teacher, Psychologist or any therapist or educator in the field of autism and you want to volunteer at Global Voice For Autism, Please contact Melissa. You don’t have to travel around the world if you can’t. You can help through Skype. If you are a parent and you want to support those now getting the ASD diagnoses, please contact Melissa as well.

It is well worth the time and imagine how much good you will feel for helping another family in need. 

A Global Voice For Autism:

How WAAD was started:

Thanks!

Above words do not reflect any committee, agency or candidate

Idil – Somali Autism Mom & Minority Advocate

Alright, so if you live in Minnesota and follow any policy or MN local politics, you have heard of the highly contested anti bullying legislation going through the MN Senate now.

First, no child should be bullied for any reason. All children should feel safe and supported in their learning environment. I totally understand what that is like since I came to the U.S at a very young age and as the new kid, the new immigrant & the only Black in many classes was bullied.

However, whenever that happened my family were notified along with the other child’s family.

HF 826 wants to take away parent notification and parent involvement. It wants to leave that decision to the school district. Let’s think about that for a minute. For example, we know that Minnesota has a horrible record in suspending and expelling minority children, especially Black and Latino at a disproportionately high rate. We also know children of color are years behind in education and testing as we have one of the worst education gap between Black and White students.

But as that was not enough power given to school districts that clearly have failed our communities, HF 826 wants to give them even more authority to not even inform a parent if their child bullied or was bullied. Imagine being out of the loop of such important decision of your child’s life. Then imagine your kid being labeled a bully and you were not aware because the school district with the already bad record decided to keep you out of the loop.

Furthermore, if you work with children with autism – you know that many of them are routine oriented and repeat the same sentence or words over and over. They can say something they heard a month or even a year ago maybe at a mosque or in your home anywhere without regard of its consequences. Imagine if your child with autism maybe heard your culture or religious values which you have a right to instill in your family and then repeated that in school to another student who might find it offensive. He is now going to be labeled a bully and you as a parent might not even be aware of it.

This bill has a language that includes putting your child’s disability in their IEP, but the problem is the parent has to request that. And, if you have a child with special needs – you understand how confusing, complex and intimidating IDEA law is which governs IEPs. Therefore, rather than protecting ALL kids from any bullying and empowering families while educating staff – HF 826 sadly wants to bully parents or those with different values, culture or religion by keeping them in the dark and out of the loop.

I think it will increase the already horrible high rate of Black and Latino suspension rate. It will also leave all parents out of the loop which is hurtful, especially parents with children with Autism.

Do we need a statewide anti bullying legislation that assures the safety and support of all children. Of course. However, it should be one that is fair, equitable and empowers parents. If you are a Somali that works in a school district and helps parents, please let them know of this bill. It will negatively impact their families because they will no longer have rights of knowing what happened in school. This will diminish parents responsibilities because they will be in the dark and how do you parent when you are out of the loop of your child’s behavior in school.

Here is the current language of HF826:

Here is the high rate of Black children suspended from school:

Here is some information on when autistic children just repeat words/sentence:

Thanks!

Idil – Somali Autism Mom & Minority Advocate

OK, so this session just started and I am already tired and frustrated. So many MN elected officials that win big in Minority communities neglect our issues when they get to the Capitol.

Last week in the House Government Operations Committee chaired by Rep Nelson voted to eliminate MN autism task force which is voluntary and has done so much good already. It delivered a one two punch against Somali autism families.

If you remember HF 2282 is written by Rep Norton – DFLer from Rochester and the queen of autism disparity. This bill wants to eliminate and dismantle MN Autism Task Force now rather than sunset in 2015. Norton wants to hand over all of the power and decisions about autism to MDH, DHS, MDE and DEED. These are the state agencies in charge of health including autism.

Keep in mind MDH can’t even follow simple CLAS (culturally and linguistically appropriate guidelines) in their website, phone line and has refused to look into autism research thus far. Rep Norton now want to give them more authority to screw autism families.

MDE while many of them well intentioned clearly is failing given the recent UMN autism study that stated majority autistic children in Minnesota are not getting diagnosed with autism until age five which is three years late. In other words, their Part C can’t even inform and educate parents to get early intervention and early diagnoses.

Rep Norton now wants to give them more authority to screw autism families.

DHS again while their leadership intentions are noble sucks (not a typo) at most things autism. They still have not even sent to CMS (Center for Medicaid and Medicare) the autism benefit law that passed almost a year ago. Currently, DHS discriminates against low income managed care kids because it denies ABA autism therapy while it approves wealthier mostly caucasian fee for services autism families.

Rep Norton now wants to give them more authority to screw autism families.

DEED – where shall I start, they can not even name one Somali autistic person they helped find employment even though they are the Department of Employment. The last ASD TF chair was from DEED and said she did not have time for this.

Rep Norton now wants to give more authority to screw autism families.

You see – these four state agencies have either failed or still continue to fail autism families. But who cares about that – let’s give them more unfunded mandate to fail us. All because Rep Norton can’t rest until
every minority autism family is silenced.

HF 2282 wants to eliminate, dismantle and take power and voice from parents passed through House Health and Policy committee today 3/14/2014 chaired by Rep. Liebling. Also, a DFLer and Rep Norton’s BFF. Oh and her side kick bully of all things minority – not just autism families, it turns out. Isn’t interesting in the ever progressive and sooo welcoming MN DFLer’s especially in the house keep delivering a one two punch against Somali autism families. Why do we keep voting for them? Think about it.

Nevertheless, while all of this can seem discouraging and overwhelming. Don’t get discouraged though because there is a way to win over this insanity through our votes. If we can learn to use our votes wisely and vote for those that not just say couple of Somali words in elections, but actually address our issues at the Capitol.

Rep Nelson, Rep Liebling and Rep Norton are all beatable this year. They have a large minority voters including many Somali autism families and relatives.

The good news is their partner in bad policy Rep Huntley who chairs Health Finance in the House is retiring this year. Thank God. Huntley is an interesting character, it is difficult to understand why he votes with them or even allows stupid legislations by Rep Norton in his committee. If you see him, he looks like the White version of Nelson Mandela. He is quite, low key and very smart. Yet he always sides with the insane state legislators.

Remember when you were young and you had a baby sitter that let you eat ice cream and cookies for dinner and let you do whatever, and not tell your parents. Well – Rep Huntley is like that he just lets the insane DFL legislators run wild and bring silly and needless bills into his committee.

Anyway, It is sad after having the gavel for years in the most important health committee – he leaves at a time that minority health is the worst in Minnesota. I wish he practiced a little more cautious and restraint and told Norton or Liebling NO once in a while.

Finally, If you live or are running or want to run in the following districts in Minnesota – please let us know. We in the Somali autism community are tired of legislators that take our votes for granted.

District 40A  is now held by Rep Michael Nelson, a DFLer has 52.5% minority and 30.3% African American. I think anyone of color can probably beat him.

District 26A is now held by Rep Tina Liebling, a DFLer has 21% minority – 14% are Black and Latino. I think anyone can also win here. She is not effective and even bullies members of her committee and sometimes public testifiers.

Last, but hopefully the first to defeat is Rep. Norton, a DFLer only has 15% minority and only 5% Black. But her bad policies have affected all minority autism families in Minnesota. We are hoping a Somali can challenge her soon. In 2012 election, Norton won by 3144 votes over GOP, Melissa Valeriano. If there is a will – there is a way in this case. Plus, the last legislator that was against MN Autism Task committee was Sen Lynch and we defeated her.

One interesting comparison – all four Minnesota Minority Councils were criticized by a legislative report. I wonder if Rep Norton will now write a bill to dismantle them too since dismantling and eliminating is her forte. Here is that story:

On a related note, Rep Moran the only African American in this committee who should really be standing up for us was not present. Nor was Rep Diane Loeffler who represents NE Mpls which has lots of Somalis. I wish they came and spoke for their constituents rather than allow Norton and her side kick bully Liebling bully our families. It will interesting to see how they vote on the House floor which is a roll call and records how they all vote. Again, we need to watch their votes, not because they learned how to say MAHADSANID OR GALAB WANAAGSAN.

If this was not true, it would be funny given these same legislators themselves are creating their own task forces and committees, such as HF 2932 by Rep Liebling.

HF 1897 by Rep Liebling.

HF 0523 by Rep Liebling decreased disability council members, (I wonder what she has against people with disabilities) but not eliminate as she wants for the Autism committee. unnnhhh interesting!

Thanks!

Above words do not represent any committee, agency or candidate.

Idil – Somali Autism Mom & Minority Advocate

Here we go again;

Let’s think about this, Minnesota takes 3rd happiest state to live even ahead of Hawaii, imagine that. I know you are thinking, happiness in minus 40 degrees, snow taller than street lights that lasts for almost half of the year, come on. Really it is true.

You see the weather is not really what makes people happy. It is the economy, state of health, education & employment rate that make one’s life happy or not so happy.

Now, what does this have to do with autism and why would I write a post on it.

Minnesota enjoys good economy, low unemployment rate, good health and good education. It even has good autism coverage, never mind it is for few hundred privilege mostly White families while the low income mostly minorities still get screwed. Meanwhile, DHS is still asking and wondering rather than correcting the inequality years later and almost a year even after the law of autism equality passed in 2013.

However, happiness seems to be one sided because minorities in this happy state have one of the worst health disparity in the country, bottom five education gap, highest unemployment for African Americans and lowest home-ownership. All research and fact based and not my Black angry woman opinion – by the way.

So, how can some do so well here while communities of color suffer in every corner? How did you vote last election cycle because it has everything to do with it.

Well – that is because if you are a minority person, especially Black and you dare ask for different policies – you guessed it. You are called the angry Black woman. Yes, that syndrome that only minorities seem to suffer, as if we need one more. And, in my case – it’s the angry Black autism mom. So, I started comparing how I advocate and what I ask of policy makers and state agencies to how White autism mothers do it.

Well – needless to say, there is no comparison. There are hundreds of autism blogs who are for or against something autism and let me tell you – By comparison to me, they drive airplanes while I don’t even drive a bicycle.

Here is the difference, when a White autism mom blogs about some government agency, politician, provider, doctor, etc – they are doing it out of compassion and frustration. Therefore, we must be understanding, patient and hear them. There are many many many autism schools, policies and issues started by pissed off caucasian mothers who wanted to help their kids. Yet when they did it – annoying might have been the worst name they got. For instance, Fraser was started by a mom who had a child with a disability and changed how Minnesota looked and treated children with disabilities. Mrs Fraser frustrated and probably pissed off many policy makers. Angry White mom – she was not. And there are plenty like her such as founders of Pacer, etc.

By the same token, when a Black mom does it and God knows there are hardly any, they are angry, difficult to work with and labeled angry Black woman syndrome. Think about that for a minute. Could this be why you hardly see minority autism blogs & advocates. They say it is better to get beaten physically rather than mentally. This is the game played on minority autism advocates, call them angry, burning bridges, difficult to work with, blah blah that way they get so tired and leave the scene. You see – if you are beaten down mentally, it is hard to get up from it. Whereby if you are beaten physically, with time it heals.

We all know in America it is a White man first, then White woman then Black woman then last is Black man. This is how and why disparity is created in every corner and in every valley. Someone recently said to me – they bully you and call you angry Black autism mom at the MN State Capitol – are you OK?

You see, that useless name calling just energizes me like the energizer bunny or ten energy drinks. I remember last year when I was advocating for equal autism therapy in Medicaid mind you. One would think Medicaid would be for low income kids. Not in Minnesota, it is for the wealthy mostly white autism families. Anyway, Rep Liebling who has about 30% minority in her district tried to bully me. Keep in mind, the Caucasian red Tshirt wearing gang were filling the capitol by the dozens wanting to take $25 million from Health and Human services budget for themselves and throw low income MA autism kids under the bus.  Yet, they were the compassionate and tired parents and I was the angry Black mother.

Way talaayeey – tol beelay. Somalidu intay codayso ayay seexataa! Nin seexday, hooyadiis baa qadisa.

At any rate, I answered Rep Liebling back and told her in a nutshell autism might have silenced our children, but it will never silence their parents. Many people came up to me, gave me hugs and kept asking if I was OK. I remember telling one of them – she just energized the crap out of me to even advocate more for my son and other children like him. Then I went to Target, bought a poster, wrote MN DFLers are bias and bully minorities and demonstrated in front of her health policy committee. Then I came home and blogged like there was no tomorrow. Rep Liebling bullies a mom.

You see, this is the game – beat us down mentally so that we give up, get tired and accept the status quo of disparity, inequality and despair. We can’t, We must not and we never will. The goal is for any policy maker who neglects to address the issues of their voters to simply campaign against them and vote them out. Fool me one election cycle, shame on you. Fool me every election cycle, shame on us.

They might have the gavel for couple of years, but we have the votes to kick them to the curve. Time to kick Rep Norton out of office and away from creating and writing anymore bad autism policies is 2014. We must vote her out. HF 2282 which wants to eliminate a children’s committee that deals with a medical condition that is higher than pediatric diabetes, aids and cancer combined is not only out of touch, but is cruel. Less than every 20 minutes, a child is diagnosed with autism and a family’s life is altered. Rep Norton from Rochester cannot mentally beat us down, we must beat her by replacing her. Come on, we can do it. Our votes matter and she is beatable.

Interesting side note, remember when Rep Winkler called a Black Judge Uncle Tom because of his vote. I wonder what Rep Winkler calls himself now since he voted against a free autism committee helping many minority autism families? Read that here:

In addition, Rep Nelson, Theis who replaced Gottwalt (who helped autism, really miss him), Peppin and Kahn all represent districts with Somalis and voted against Somali autism families. Rep. Kahn is probably the easiest to vote out, but they are all beatable. 

Remember them in Nov 2014 and kick them to the curve.

How happy non minority Minnesotans are:

As you might have heard by now, Rep Norton (DFLer) from Rochester who just joined Minnesota Autism Task Force few months ago wants to do away with it and eliminate the whole Autism task force.

She introduced HF- 2282 which passed out of Government Operations Committee chaired by Rep Nelson (DFLer) from district 40A.

Who voted to eliminate and who voted to keep MN ASD TF will be in a different post later. (to say I was speechless would be an understatement by this committee)

Alright, so what does this bill do? and what/how MN ASD Task Force started;

1. HF 2282 eliminates and dismantles Minnesota Autism Task Force created in 2011 and is suppose to sunset in June 2015. It was authored by Sen Senjem – R from Rochester and Rep Mack – R from Apple Valley.  It has a charge to write and implement a statewide autism plan. There are 19 members consisting of four legislators, advocates, parents and providers. It has met once a month on most times even though the charge only asked to meet few times a year. It has a draft state plan which still needs lots of work, such as forming subgroups and coming up with a thoughtful and holistic autism plan that benefits and supports children and adults with autism across the spectrum and across lifespan.

2. HF 2282 states state agencies – MDH, DHS, MDE and DEED will implement the autism statewide plan. The problem is it is not final, did not have thoughtful discussion by the members or heard from the public.

3. HF 2282 states diverse, under-served communities will have couple of times per year to be heard. That is too little, not enough and enhances inequality.

4. HF-2282 takes any power and voice from parents and advocates and gives full power to state agencies. In other words, it diminishes parent empowerment.

5. MN Autism task force only has one more year, so why rush it?

6. MN Autism task force costs the state nothing and has zero fiscal note.

7. MN Autism Task Force has given autism community a voice and HF 2282 wants to take it away prematurely.

8. HF 2282 wants to implement a plan that is currently a draft and not ready for prime-time.

9. Autism is very complex medical condition and has many changing parts including the new DSM – 5, over 90 research last year alone that were published and eliminating a volunteer parent based task force that sorted it all will hurt MN autism community immensely.

10. Why the rush to dismantle autism task force that is needed so much and only has a year left anyway?

My take and views are;

1. Let the Minnesota Task Force which costs the state zero continue and do what it was created for, that is to write and IMPLEMENT a statewide autism plan with collaboration from all four state agencies, such as DHS, MDH, MDE and DEED.

2. Afterwards, create a Minnesota Autism Commission that has representatives from both parties to get equality, minorities, rural folks, all four necessary state agencies, ASD therapy providers and researchers that is permanent and has funding allocated for staff.

Therefore, there is absolutely no reason or need to rush, dismantle or eliminate current MN Autism Task Force by force and dictatorship which is exactly what HF 2282 by Rep Norton wan
ts to do.

Finally, what I would like and hoped was if the authors of MN Autism Task Force – Sen Senjem and Rep Mack actually fought for their bill to survive rather than allow Rep Norton bully and eliminate. They say – you can lead a horse to water, but you can’t make him drink it. I as a parent or even as an advocate can’t fight to save a bill, that is the job of the legislature that created it. It is too bad and sad they don’t fight for their bill.

Minnesota state legislature session is just starting up and guess who already wants to bully autism families? You guessed it – especially if you read this blog….Rep Norton. (The Queen of Autism Minority Disparity)

Norton already wrote legislation HF 2282 in which she wants to dismantle and eliminate Minnesota Autism Task Force. That is right, at a time when UMN and CDC just released their study findings stating our state has one of the highest for Autism in the country, especially for Somali and White Families – Norton wants to screw families even more. To make matters even worse, MN Autism Task Force had no idea that Norton wanted to crumble them. In fact, as recent as couple of weeks ago, Norton asked the task force to accommodate her since she would not be able to come to a meeting. All along, she was working behind their back to dismantle and crumble them. How deceiving and underhanded.

Here are the results of Somali Autism study from UMN & CDC;

In sum – Somalis 1 in 32, Whites 1 in 38, Hispanics 1 in 80 and Black non-Somalis 1 in 62. Utah has the highest in the nation with 1 in 47 and it seems that White and Somali children are even higher than that in Minneapolis. Yet, a Minnesota elected official from Rochester wants to get rid the only state autism task force. Can you imagine that level of disconnect and dismissive arrogance in an ignorant kind of way.

At a time, when Congress is writing a bi-partisan autism legislation with Rep Smith, a Republican from New Jersey (also a high autism prevalence state) and Rep Doyle, a Democrat from PA are collaborating to reauthorize Combat Autism Act, our own local legislators want to dismantle and dismiss the state autism committee. Imagine that as this is an election year, if they don’t understand and support our children’s health – why should they get our votes? Ask yourself!

At a time when IACC is about to release last years autism research summary advances that the Federal autism committee (IACC) voted for which I am happy to say includes the Somali Mpls Autism Prevalence Study – our own elected officials want to ignore, neglect and abandon autism families. Imagine that as you vote this year and pay attention who votes against your child’s health.

At a time, when other states are creating autism committees and task forces to help families and keep up with autism related policies and research – MInn elected officials want to strip you what little that exist and bully autism families by eliminating help. Imagine that and vote for those that support your causes.

Personally, given the long & difficult relationship between Norton and our community in autism and Somali women’s health issues – I am not surprised she would write such bill. I am however very baffled why Rep Nelson, chair of government operations would even entertain such stupid, needless, bully and senseless legislation in a hearing. Bullying is the ability and willingness to bully others because you have the power. HF 2282 is a bully bill towards powerless autism families. Given the hype of anti bullying bill 826, legislators can’t preach one thing while they practice another. All bullying must be stopped even by legislators.

Here is what the autism task force dismantling bill says which is a flat-out lie, deceiving and misleading.

1.6    Section 1. AUTISM SPECTRUM DISORDER STATEWIDE STRATEGIC PLAN

1.7IMPLEMENTATION.

1.8The autism spectrum disorder statewide strategic plan developed by the Minnesota

1.9Legislative Autism Spectrum Disorder Task Force shall be implemented collaboratively

1.10by the commissioners of education, employment and economic development, health, and

1.11human services. The commissioners shall:

1.12(1) work across state agencies and with key stakeholders to implement the strategic

1.13plan;

1.14(2) prepare progress reports on the implementation of the plan twice per year and

1.15make the progress reports available to the public; and

1.16(3) provide two opportunities per year for interested parties, including, but not limited

1.17to, family members of individuals with autism spectrum disorder, underserved and diverse

1.18communities impacted by autism spectrum disorder, medical professionals, health plans,

1.19service providers, and schools, to provide input on the implementation of the strategic plan.

1.20    Sec. 2. REPEALER. (Minn Autism Task Force Elimination)

1.21Laws 2011, First Special Session chapter 9, article 6, section 95, subdivisions 1,

1.222, 3, and 4, are repealed.

Thanks!

Above words do not reflect any committee, candidate or agency.

Idil – Somali Autism Mom & Minority Advocate