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Comments Off on 2020 – GoodBye and Good Riddance From Around the Globe

Alright – so, 2020 has been a bad-ass year for everyone in the whole world. No one could’ve imagined a pandemic that would rock all of us to our core in unimaginable ways. 2020 has been hard for all of us, but especially kids and adults with autism. Social communication and social skills are core deficits for individuals with autism. We (parents, caregivers, teachers, therapists, etc.) work hard teaching social skills and social communication to autistic individuals. Then with Carona, that was out the window, social distancing and masks became the norm.

Look me in the eye, say what I say, do what I do, give a hug, smile, touch blue, touch car, etc. and etc. were skills our kids needed and were taught. 2020 made all of these impossible. I remember it took months to teach my son to look people in the eye or give a hug. Now all of the sudden, we had to say no hugs, don’t get close and how do you even teach verbal imitation when your mouth is covered with a mask. How do you teach any skill to an autistic kid through a computer or online. It is impossible.

2020 has been specially difficult for autism families because it demanded the opposite of everything we worked so hard to achieve.

So, like a bad politician; I say to 2020 – goodbye and good riddance. May 2021 be a year full of happiness, health and prosperity for autistic children and their families.

Above words do not reflect any candidate, agency or committee

Idil – Somali Autism Mom

Comments Off on MN DHS Throws Kids with Autism under the Bus and over the Bridge – Yep

Alright – so, if you read my blog then you know I am not a big fan of the current commissioner at DHS nor the current governor. I have good reasons. First, they preach equity while practicing inequalities. They preach inclusiveness while practicing exclusiveness. More employees have complained about racial discrimination under them than at least three previous administrations combined. An accident – hell no. They are bias to their core. Don’t let their charm fool you.

At any rate, this blog isn’t about how racist DHS is. We all know that. It is how DHS’ Commissioner Harpstead and Gov Walz (aka One Minnesota Hoax) have refused to protect children with autism and their families again.

Minnesota Department of Human Services under Gov Walz (One Minnesota Hoax) threw kids with autism and their families under the bus again. DHS refuses to protect the children. They refuse to ensure comprehensive and thoughtful background studies are done on the therapists who see these vulnerable kids. They refuse to protect the kids by not making autism therapy agencies licensed or even certified. You read that right.

The human services agency refuses to protect humans, especially small children with autism who are vulnerable and can’t protect themselves. What a load of crap from DHS’ commissioner Harpstead and Gov Walz.

I am sooooo pissed right now. Commissioner Harpstead and Gov Walz are no friends to autism families. They again threw us under the bus and over the bridge. I urge any autism family or anyone who cares about autism to send emails and testify in the state legislature about this. We should be proactive and protect the kids not reactive and wait for another Jensen settlement. If you live under a rock and don’t know who Jensen was, here is a snapshot.

Their excuse – we don’t have money. What now? How much is a kid with autism worth? I mean seriously – how much?

This is not true, DHS has money. They just don’t care about this issue. Lovely.

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

Idil – Autism mom and Advocate

Comments Off on Alex Bartolic from DHS Retires – I will miss you and Thanks Much!

Alright – so, Alex and I go years back. I met Alex over a decade ago, omg I feel old now. When I first started advocating at Minnesota Department of Human Services (DHS) with other autism parents, Alex was the first person that then DHS commissioner Ludeman back in Gov Pawlenty’s administration (the good old days) asked to answer my million autism questions. I remember I would call Alex and ask her questions about what services does DHS cover for kids with autism including does DHS pay/cover ABA therapy. Of course, we now know that DHS did not cover ABA therapy for kids with autism who had Medicaid but it did for wealthier kids who had TEFRA. I would find out when Alex would be testifying at the capitol and make sure I go there to testify and ask the same questions again and again. The committee chair would then have to call Alex as she often represented DHS and ask her “does DHS cover ABA therapy”. Alex would politely say no. Then I would say “yes they do but only for wealthy and mostly non-minority families”.

I know this pissed so many but it also made this state wake up to its many many many disparity and bias ways. As they say the rest is history and Minn now has one of the best ABA therapy coverage for kids with autism in the nation. This blog is not my advocacy and how ABA coverage came about, it is about Alex and my interactions with her.

I am eternally grateful to Alex. From day one until we actually passed not just EIBDI but other policies and laws helping kids with autism, Alex has always listened and took my views and concerns to heart. This does not mean I got everything I asked her but she listened. Of course, I wish her replacement was a person of color but maybe that is a dream. DHS is still one of the most racist agency in the state and will probably stay that way for a long time. Yes, I know they hired a black assistant commissioner but that is just for appearance not because DHS actually cares about equity nor equality – not under Governor Walz anyway.

Thank you Alex for validating my points, listening to my concerns, answering my questions and most of all respecting me even when we disagreed. No matter what I threw at you in state committees, meetings or in person – you always remained calm, cool and collected. Thank you for vising Somali community in Brian Coyle with then Asst Commissioner Loren and hearing from Somali autism parents. Thank you for all that you have done. I along with thousands of autism families in Minnesota will benefit from the many policies that you helped us with.

I wish you all the best in your next chapter!

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

Idil – Autism Mom

Comments Off on Disney – The Happiest Place on Earth – Except if you have Autism

Alright – so, Disney where dreams do not come true for families whose children have autism changed their disability guest assistance policy few years ago. The current one states if you have a disability and need accommodations, then you go to whatever ride you want and they tell you how long the wait is and you come back. I am sorry – now what now?

Let’s put this in a context that someone who has a child with autism, works with them or is a family member can understand. If our kids could comprehend waiting and coming back then so many meltdowns and behaviors would not exist. The sad thing in all of this is that Autism Speaks who speaks for no one with autism unless it fills their bottom line were part of this stupid decision. I kid you not.

At any rate, Disney has been sued by dozens of autism families and had some good and some not so good court decisions. Finally there will now be a trial next year.

In my own experience, I have taken my son who has autism to Disney several times before this stupid policy and he always had a wonderful time. He would only ride maybe two or three rides but we had no behaviors and left happy. Then we took him after this silly policy was implemented. We went to his favorite ride and they said the wait is one hour and half. Now comes the fun part which we even practiced. We tried to tell my kid we have to…..drum roll please……. wait (no pun intended) for an hour and half. Of course, he did not understand that nor wanted to wait. He tried to run towards the ride which of course was dangerous and we had to call for assistance and we left. We never went back. This really makes me sad. There are not that many things these kids like. What little they enjoy – places like Disney take it away. I even called Disney and said I can bring a note from his doctor or they can get it from him directly. Unfortunately, Disney was not helpful. I am hoping this upcoming trial will bring good news to our children with autism.

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

Idil – Somali Autism Mom

Comments Off on MDH – AKA The Do Nothing Agency About Health Pretends to Care about Somali Autism Issues – What now?

Alright – so, if you follow local politics in Minnesota then you know current Gov Walz also known as the “one Minn Hoax” re-named Jan Malcolm. Who is she? in a word – useless. She took over after previous Minnesota Department of Health (MDH) Ed Ehlinger resigned over elder abuse issues. Did she do better? Heck no.

Unless you live under a rock, you know that Minn has one of the worst health disparities in the country. Not kidding. What is disparity and why do we have it so much here? Well – because people like Ms. Malcolm are in charge of our health. Disparity is when a white person gets better health care simply because of the color of their skin and a minority person gets an inferior health care simply because the color of their skin. Ms. Malcolm interviewed (I think like a hundred times) an incredibly smart Somali person to be one of her assistant commissioners. Did Dr. Shire from the prestigious Mayo Clinic get the job? Of course not. This was to waste his time and for the One Minn Hoax Governor to pretend he cared about health equity.

As this was not bad enough, I recently went to an event held by talented Somali doctors who were brown-nosing the health department regarding autism. To Somali Medical Assoc of Minn – Let me give you free advice from someone who has advocated at MDH for years – actually almost a decade. The reason this state has shameful health disparity is because of people like Commissioner Jan and those under her including Ms. Bahta, Janet O, and so many others like them. If you are under the impression that MDH cares about Somali autism issues. Oh please think again – not after Gov Pawlenty and previous Commissioner Dr. Sanne. If you think MDH will give you meaningful funding, think again. If you think they will nurture your careers, really think again.

Qofkii walaalkiis loo xiiroow, adna soo qoyso. Kuwii idinka horeeyayba MDH way xasdeen, way ciileen, way canaaden, way xumayeen. Ha moodina in qofka walaalahiin xumeeya in ay idinka idin fiicnayniyaan.

Qofkii walaalkiis loo xiiroow, adna soo qoyso.

In my humble opinion, you are all bright, talented and amazing. You can do better than brown-nosing MDH. If you really want to help Somali autism children and families – then talk to us. Don’t speak for us – rather engage with us. Don’t tell us what to do – help us figure it out. While I understand there are many who will take advantage of us such as the Indian Doctor you were speaking of, that still does not give you the right to demonize any parent for doing what they think is right. Again, nala hadla, nala tashada, na waaniya, na baara, na caawiya idinka oo aan soo marin the useless MDH.

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

Idil – Somali Autism Mom

Comments Off on MN State Legislative Session ended last month – May of 2019 and Students Lost – Yep (Unions and Lobbyists won)

Alright – so, Minnesota State Legislatures ended this year’s session with lots of hoopla and hapla but nothing significant. First, they (the house, senate and the governor’s office) could not agree on their budget items as well as policies which meant they had to go into special session and basically whatever the Senate wanted – it got in my humble little opinion. That is for reducing racial disparities in the schools. Where can I start? First, this was my first-year advocating in education committees. The Senate had only one committee where it combined policy and finance for all education – K to 12th. The house had three committees. One for early education, one for policy and one for finance.

After my son was suspended by an autism teacher Kelly Morris and Principal Jaysen Anderson in Bloomington Public Schools last year on May 3rd at 5:18pm, I have been trying to understand how children are suspended and why Minnesota has a horrible and shameful racial discipline record. I am a firm believer in changing policies if we want to change the trajectory of anything so I went back to the Capitol and I must say it was just as I remembered. I had to take an Advil before I went there and took an Aleve after I left. This building is not designed to be parent friendly. I don’t even think it is human friendly. It certainly is not welcoming to minorities by any measure. It is filled with cocky and elite lobbyists, out of touch legislators and over-rated staff. Ok, not all of them but most.

The governor put a non-exclusionary language in his proposal through the state education department (MDE). Then the House adopted the same language, but the senate did not. So, I thought – ok 2/3 isn’t bad and I tried to convince, kiss butt, brown-nose in the senate to no success. Sen. Nelson who represents Rochester (a city with a horrible racial school discipline record) would not blink. Nelson refused to even have a hearing on anything school suspension at all including not suspending 3 and 4-year old’s. I know who the heck in their right mind suspends toddlers? Oh – yeah principals and teachers who are protected by the unions and lobbyists. The principals assoc lobbyist worked really in the senate and in a nutshell killed any hope we had with Nelson. She listened to him and not to one single family. Sad.
I have tried numerous times to convince Nelson the importance of this issue but for some reason, she simply seemed oblivious to it. One line I will never forget is when she said, “I just can’t believe kids are suspended for no reason or disproportionately”. Of course, there is data and research that tells us otherwise, but Nelson just could not comprehend this idea. Don’t get me wrong, I personally like Sen. Nelson but I have to say I was extremely disappointed in her this session.

You know they say – when you lose be gracious. Well, I lost to the big lobbyist for the principals association. They also say – lose the battle but not the war. I am even more determined to keep coming back every session until children are kept in the classroom. We cannot suspend children like mine who do not even understand what the heck suspension is while the teacher (Kelly) and the principal (Jaysen) who did it are in school getting paid with public funds. This is not right, and I will not rest until Kelly and Jaysen are no longer able to kick kids out of school. My two cents in this issue is that the Republicans simply did not understand the need to hold principals and teachers accountable, and the Democrats who understand this issue or at least pretend did not fight hard enough to make a meaningful difference. It was comical to hear the DFLers blame the GOP when they were in charge of the House, Senate and the Governor’s office but failed to pass any good legislation. It was equally comical to hear the GOP say it is the DFLers protecting the teacher’s unions. I do not think either party cared enough to make a change this year. While the DFLers protected the teacher’s unions, the GOP protected the principals and administrators. No one protected the children and that is the saddest component in this. I always heard from both sides what the teachers and/or the principals and administrator’s priorities were. I never heard any legislator say the student’s priorities. I also heard like it was holy water – unfunded mandate. This was the arrogant and elite lobbyist for the principal’s favorite word and it worked like a charm. The truth is schools are FUNDED to keep and teach kids.

I am grateful to Josh from EdAllies and Susan – a mom whose child was also suspended. I thank you both and we will come back next year stronger. Josh wrote a detailed blog on his work.

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

Idil – Autism Mom

Comments Off on In Honor of Women’s Day – March 8th, 2019.. My experience of Advocating as a woman for Autism

Alright – so, today is international women’s day. As a woman, a black woman and an autism mom, I’ve

had both highs and lows in my advocacy journey. Someone once asked me “what drives your advocacy”.

Without even thinking about it, I said: “a man underestimating me or my child gives me energy that I can’t even explain”. I am not really sure why that is. I know that everything that I have ever advocated for whether I have been successful or not came from a man pissing me off.

One of my favorite authors is Chimamanda Ngozi Adichie. Below is a speech she gave at the Chatham House in London, UK. There she said:

  • In our world, a man is confident but a woman is arrogant.
  • A man is uncompromising but a woman is a ballbreaker.
  • A man is commanding but a woman is demanding
  • A man is forceful but a woman is pushy
  • A man is assertive but a woman is aggressive
  • A man is strategic but a woman is manipulative
  • A man is a leader but a woman is controlling
  • A man is authoritative but a woman is annoying

She continues to say the characteristics of the behavior is the same the only thing different is the gender of the person.

A man who shows righteous anger does not define him, but a woman’s anger defines her.

I urge everyone to watch this video, it motivates me.

My advice today is if you are a man, a father, a husband, a brother – please don’t just write laws to make us equal but change your minds to see us as equal.

As usual, the above words do not represent any candidate, agency or committee.

Idil – Somali Autism Mom

Comments Off on Previous CEO of Minnesota Autism Center – Kathryn Marshall Opens Another Autism Center – Yep

Alright – so, Minnesota Autism Center (MAC) is arguably the biggest ABA therapy center in Minnesota. I would say this is probably due to Ms. Marshall’s heavy hand manner. If you have a child with autism and live in Minnesota or are in the field of ABA, you probably heard of Kathryn. Most of us that she came in contact with have had a love/hate relationship with her. Kathryn could be really good and really bad – sometimes at the same time. For years, I have tried to figure Kathryn out and til this day – have been unsuccessful. My son did ABA therapy at MAC way back when they only did in-home ABA. Two other autism mom’s and I once recruited over 20 Somali autism parents for MAC’s Woodbury location. You would think Ms. Marshall would be grateful, nope – not Kathryn. I remember after she opened the Woodbury center and she and the three of us went to a Somali restaurant for lunch. After we ate, Kathryn gets up and throws $20.00 into the table then leaves. The three of us looked at each other and said: “we hope she does not think lunch for five people is $20.00 at a Somali restaurant”. We told her assistant who was with her to take the $20.00 and give it back to her because we will pay for lunch.

I still remember her assistant’s face who said: “no way, she will yell at me, I can’t take this back”. You see Ms. Marshall instilled fear in almost everyone that worked for her as well as many autism parents who took their children to MAC. On the other hand, she could really be kind. One time, she and again the original Somali autism advocates (Hodan, Istahil and I along with Abdihakim) took her to Rochester’s Somali TV where she asked us to help her promote MAC’s center in Rochester. In one sweet moment, she took me aside and said: “I know you are a strong advocate, but always put and advocate for your son first”. How sweet, right? then a few short years later, she would try to discharge my son from MAC at 9:47am when his therapist was to start at 10am on a Monday morning. It was probably one of the most difficult days I had with so many blood-sucking greedy ABA providers. I was livid as you can imagine. She instructed everyone at MAC to not even tell me why or what happened. You see Kathryn would say to her staff jump and everyone would say how high? This even included those that were licensed mental health professionals whose licenses were being used for the treatment plans.

I then remembered her advice from Rochester which was to advocate for my son first so I did. I blogged about this and will not do it again, but to make long advocacy short this is why we now in Minnesota have parent rights and responsibilities and a means to appeal the ABA therapy agency’s discharge or even treatment plan. This is also why EIBDI has a component that says the parents can get an objective comprehensive multi-disciplinary evaluation (CMDE). Additionally, Minnesota state Medicaid agency sent MAC a corrective action to take my son back because Ms. Marshall violated child-centered family friendly part of CTSS and MAC had to develop an inclusive policy and collaborate with parents before their child is discharged. MAC also has to report to the state how many children they discharge annually. I guess everything happens for a reason. Our state probably would not have all of these good measures that protect children with autism and their families if Kathryn did not act selfish and heartless.

To Kathryn, if you read my blog which I heard you do:

I know you tried to connect with me to extend an olive branch or maybe for me to stop writing my experiences while my son was at MAC. You have tried to have your hot shot lawyers to silence me and they could not, you have tried to contact members of the Somali community to silence me and they could not. You see Kathryn, no one will ever silence me about autism or advocating for my son which is what you told me years ago in Rochester.

This time, I will extend an olive branch and will contact you to have coffee for old times sake. Our children have autism and we need to at least help each-other for their sake. Additionally, while I disagreed how you managed MAC’s staff and parents, no one else can claim the powerhouse you made MAC become in Minnesota and probably in the midwest. I truly wish you all the best in your new agency which is helping young adults with autism. Clearly, you are ahead of the pack again because we sorely need such important services.

Above words do not reflect any candidate, agency or committee

Idil – Somali Autism Mom

Comments Off on Update from the Lawsuit Against Disney by Awesome Autism Families

Alright – so, if you know me or follow my advocacy then you understand I think there are two ways to fight. One is through advocacy and inclusion and the other is via lawsuits. I have written about this which has also affected me. My son loves Disney but after they changed their services for people with disabilities including autism – it has been very hard to visit Disney. Children with autism often don’t understand the concept of waiting which is why so many ABA programs start with a wait target. Usually it is waiting for seconds or maybe minutes at a time. However, Disney’s new rule says – the wait for this line is an hour and half, we will give you a pass to use after the ninety minutes are over. I know what now? If my child can wait for 90 minutes for something, heck anything – then why are we even here. We could just stand and wait in the regular line with people without disabilities. This is similar if you told someone with no legs to be in a running competition with someone who has legs and the only accommodation you made was give them a wheelchair. The one with legs will still win because a wheelchair can’t compete fairly in this situation. Maybe this is not a good example but the point is the ability to understand waiting concept is one of the characteristics for autism and to make them wait for a ride when they can’t even comprehend the concept waiting is just cruel.

At any rate, there have been some amazing autism parents in various states such as California and Florida who sued Disney and some judge took on the side of Disney but some the parents appealed and there is a good news on this.  Also, if you want to keep calling Disney as I do and complain about their proper accommodation for people with disabilities particularly those with developmental disability, you can call 8185601000 and press one. You can tell them your experience with your child. The more of us call – the better.

Here and here are previous blogs on this issue. I am a firm believer that individuals with autism must be part of their communities including going on vacations and enjoying life as any other human being. I also believe it is right and fair to accommodate them when necessary and needed because of their disability. No one is perfect, but individuals with autism are perfect in an imperfect world.

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

Idil – Autism Mom

Comments Off on Dear IACC – Please Do Not Silence Autism Parents or Any Public Person

Alright – so, IACC is the Federal Interagency Coordinating Committee where all things autism at the federal level go through. There are public members and members from government agencies that have anything to do with autism. I was lucky enough to have been a member in this committee during the last cycle and was appointed by previous U.S Department of Health and Human Services – Kathleen Sebelius.

What I liked about this committee was that even though there were so many diverse and different voices which sometimes resulted heated conversations – folks never took it personally. I remember there would be stark differences between members from both the federal government and public members but at the end of the meeting, they would share a cab back to the airport or have lunch and not even discuss any meeting topics. Everyone came to do their job in their role and spoke for whoever they represented. That was simply amazing.

One of my favorite part was public comments. This is when anyone from the public would make oral comments or send written comments to the committee. Often there were autism parents who would travel from various states to make their case, speak their mind, speak for their children and tell us what they thought of us and what IACC was doing or not doing. This was often emotional as many parents spoke about their children’s challenges and their own fears. Dr. Insel who was the chair of The National Institute of Mental Health (NIMH) was also the chair of IACC. There will never be another person like him. Sadly he left NIMH and IACC. Dr. Insel never took anything the parents said personally, he always listened with an empathetic ear and sympathetic mind. He gave everyone an equal chance to speak. Often there were the same parents who lived close to Washington DC that would come, and he did not mind that nor did anyone else. Whatever decision IACC made was voted publicly and discussed openly.

I can understand not every autism parent or family member can come or afford to speak in this meeting which is why parents who lived close came often and that was OK. My first time at IACC, I was also a parent who spoke during the public comment time and after I spoke – Dr. Insel asked the committee what they were going to do about autism and the Somali community. This was truly an amazing moment as we all now know given how much work has been done about autism and Somali children. Yes, I know we still have a lot to do but the point is parents spoke candidly and openly without being told they could only speak once. I  recently read a blog about one of my favorite autism moms – Katie Wright, daughter of Autism Speaks founders and a blogger for Age of Autism. At first, I thought maybe this was just a mistake then I looked into it and sure enough it is true. IACC only wants to hear from each parent once a year. Seriously. Autism does not happen once a year – it is 24 hours a day, 7 days a week and 365 days a year and we can only speak one time in the whole year. Come on now IACC? You can’t be serious.

Autism parents cannot and shall not be silenced by IACC or anyone for that matter. If we don’t speak for our children who will? I am extremely disappointed in this decision and quite frankly surprised. IACC is governed and funded with federal public funds. As such, public comments from parents should be important and validated even if it is the same message from the same parents. IACC members – please take a look at this horrible decision and reverse it. As members – you must understand parents are frustrated and tired. We are not looking to be liked or be friends with any IACC member. We are simply looking for real research that answers our autism questions and concerns. You don’t have to like what we are saying or even agree with it but you do have to listen to it and respect it. As an autism mom and a previous member of this committee, I am deeply hurt and disappointed in this decision and respectfully ask that this one time per year per person policy is removed.

IACC’s public comment states:

A limited number of slots for oral comment are available, and in order to ensure that as many different individuals are able to present throughout the year as possible, any given individual only will be permitted to present oral comments once per calendar year (2018).

Imagine if I was only allowed to speak about autism and Somali children once per year, imagine if parents who kept telling IACC about the connection between autism and GI or immune issues only spoke once per year – just imagine how slow these issues would’ve come to light. Please let the public speak their mind and tell you what is happening in their lives. That is the very least IACC members can do – listen and respect different views of autism.

I just sent below written public comment to NIMH & IACC Chair and Members.

Dear Mr. Chair and Members:

Please let autism parents and the public speak as many times as they can or possible and do not limit them to once per year. As autism parents, we have to repeat our message for others to hear us, it is the least we can do. Please do not silence us. Autism has already silenced so many of our children and I don’t think IACC should silence or limit any parent’s ability to speak for their child.
Thanks much in advance and I hope you reconsider this horrible decision.

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

Idil – Autism Mom