Category: autism

Posted in autism, parenting

My Fear of Raising Black Autistic Kids Today

Posted on by Mom Boss

Whenever you see the clip on the news of the latest unarmed black person being killed at the hands of a rogue police officer, do you ever find yourself thinking- “My God… what if that was my child?” Because I have… I have thought about this more times than I care to count. This is something that scares the bejeezus out of me because, I not only have two black children, I have 2 Autistic black children. 

“According to the advocacy group Autism Unites, people with autism spectrum disorders are seven times more likely to interact with police over their lifetimes, compared with people without a cognitive disorder.”

So when I imagine if this were to ever happen to my son, I imagine it would go something like this:

My beautiful brown-skinned curly haired sweet boy, maybe 9-10 years down the road (so 16-17yo) walking home one evening from a friend’s house or maybe home from a shift at his first job, when someone calls the police about a “suspicious black male” in their white neighborhood. A police officer arrives,     (I’m going to pause here and say- this is not going to be a jab at police officers for racism. This is merely to point out a lack of knowledge and training in mental health [specifically autism] for first responders and a need for procedure reforms)     and because they are unaware that this tall-for-his-age boy, not only lives in this neighborhood, is also autistic- they do the full bit of turning their lights on, shining a flashlight on my son, and approaching him- all of which will overload his senses, making him confused and overwhelmed. They speak in a loud and firm voice- which he takes to be mean and aggressive (his nature) which makes him paralyzingly scared. They try talking to him, but because he is often uncomfortable in social situations with people he doesn’t know, he doesn’t respond. Which makes the police officer suspicious and agitated. Eli would most likely not look this officer in their eyes and would probably be fidgeting subconsciously with his hands and fingers like he normally does when he is nervous, unable to stand completely still.
  Being distracted and overwhelmed by the lights, a loud affirming stranger barking orders at him, unable to fully communicate or probably comply with some of his orders… How do we think this situation would end? Say we get to the point where an officer tries to put handcuffs on my son and he has an emotional breakdown and isn’t able to process all the different emotions he’s feeling (which currently happens to him almost daily) and begins to “resist” the officer. This is where my son could lose his life. All because a first responder couldn’t read the signs. 

So what are the signs?

A person with autism might:

-Have impaired sense of danger
-Be overwhelmed by police presence
-Fear a person in uniform, or become overly curious and reach for objects (badge, handcuffs) 
-React with fight or flight responses
-Not respond to “stop” or other verbal commands
-Have delayed speech and language skills
-Engage in repetitive behavior (stimming, rocking, hand flapping, spinning)
-Have sensory perception issues

According to Autism Speaks: how should a police officer approach a person with autism?

-Be patient, give them space
-Use simple, concrete sentences
-Be alert to signs of increased frustrations and try to eliminate source
-Avoid quick movements and loud noises
-Do not touch them unless necessary

Yeah that’s cool, but… what if a police officer doesn’t know someone is autistic?

So if a police officer has NO IDEA that the person they are about to approach has Autism and starts exuding any of this behavior…then what? Very few Police Departments in the United States have any mandatory formal special needs training for their officers. Which means the majority of officers would not recognize ANY of this behavior and associate it with Autism Spectrum Disorder. My guess is that it would be assumed to be drug induced behavior. Like in the story of 14 year old Connor in Arizona:

-Connor was approached by a police officer in a park. 
When a family friend returned to the boy after being 
gone for only a matter of minutes, the police officer 
had the 14 year old boy pinned to the ground because 
he thought the boy was on drugs, when the family friend 
ran up and told the officer he had Autism and was 
“stimming” the officer got up and released him. The 
officer left the boy bruised and bleeding, the boy also 
needed surgery on his ankle 6 months later directly due 
to the incident. The officer received no discipline.

Now pause for a second and think- what if an officer stops my son and DOES have personal prejudices against POC (people of color). How likely are they to follow any of the suggested guidelines on how to approach people with mental disabilities/Autism? If someone out there has prejudices against black males- are they going to assume that this teenage black boy that won’t look him in the eyes, won’t respond to his questions, and won’t stand still and stop fidgeting is on the Autism spectrum or is he more than likely going to assume he’s on drugs or simply being disobedient? What would you think? No… no, Not the answer you would say out loud in front of people- what would be the first private thought to come into your head if you saw a black male with that behavior? Because I’d like to survey the country, personally, and see how many people answer “crack head”…

Of course these are all hypotheticals here, as my son is currently only 7 years old; but am I making any of you go:

This may just be hypothetical for me and my children’s future… but it is a reality out there for many mothers like myself who DO have teen-adult black autistic individuals in their family. 

Like in the story of 18 year old Ricardo Hayes.
>>>> Read here <<<<

So…..what am I getting at?

What I’m talking about isn’t necessarily a dig at the cops themselves. I don’t want anyone thinking I am anti-cop here… My grandpa was a state police officer. I’ve had multiple family members, including my husband currently, in the military. I am NOT anti-police, anti-military, anti-government, anti-whatever else (well, I think most of us out there can agree to being anti-BAD COP… I hope anyway). However… the point I am trying to make here is: there is a huge need for multiple types of reform in our country. We could honestly all benefit from everyone taking a step back and reevaluating every inch of our country’s foundation. I could go all day, but for this blog specifically… I think our country’ public safety system needs a complete overhaul. 

I feel very strongly that police officers need more education and training. Again, this is not a dig at the actual officers- this is above them. We need to be providing them with more knowledge, education, and support BEFORE they start.

Hear me out… not every state requires you to get a college degree before becoming a police officer. In most states you can become a police officer with no other education beyond a high school diploma/GED and completing the academy. State police academy’s seem to vary in length between 14 weeks to 6 months long. That’s it.

So you could have any racist Joe Blow off the street with a GED, go and complete a 3-month academy, pass a drug test, and then send him out on the streets with a loaded weapon to happen upon my little dark-skinned autistic boy who is afraid of strangers and doesn’t respond appropriately, by nature, in social interactions? No thank you…

So why is there not more schooling required to become an officer? Why are there no mental health evaluations done on potential officers to make sure they are fit for the job? Why do all departments not have mandatory mental health trainings for officers like New Jersey or Florida? Although- I’d like to point out that Florida only enacted that mandatory rule after police officers shot an autistic man’s behavioral therapist because they thought the autistic man WHO WAS SITTING & PLAYING WITH A TOY TRUCK… had a gun. See video below:

Unless you live under a rock, I’m sure you’ve heard the recent cries from people to “Defund the Police.” When I first heard that I thought (like I’m sure plenty of you out there did too)- Well that’s just dumb, that doesn’t make any sense. It will look like the Purge movies here…. Until I started reading and listening (which more people really need to start doing by the way, but I digress…)

From my understanding-     [so, if I’m interpreting anything wrong here, please feel free to comment on the post and correct me!]      -people aren’t just saying- take away the police and be done with it. They are saying, take away some of the police funding
(think larger cities here, not your Podunk barely-staying-afloat towns filled with people of the same race [*cough* white…] and generally same economic statuses)
and invest that money into the low income neighborhoods. By investing more money into the neighborhoods, the schools, the hospitals, etc you are, in one sense, improving the safety of the entire community without buying the police newest-model cars or bigger guns.

            Another idea I’ve heard from “defund the police” is to dismantle the police department… *as we know it currently*   See video below:

Essentially, We would still have police officers, but they would not be called for every instance. Our public safety departments would be separated into specially trained and educated groups, specifically trained to handle specific situations. Of course this may just be a dreamer’s idea, I have not had time to do the full research on this aspect yet (but you bet your ass that I will be!)

            If you’ve gotten this far in the post, thank you. Whether you agree with anything I’m saying or not… thank you for at least taking the time to hear out someone else’s opinions and someone else’s feelings and fears. This blog wasn’t made in haste in the heat of the moment. I have been researching for this blog for some time now. I have checked facts, I’ve checked DOJ websites and documents. I’ve even attached all of the websites below that I used for this blog. This blog was not written purely from emotions… this blog was written from INFORMATION. 

            All I’m going to leave you with is: no matter what your feelings are towards Black Lives Matter, police brutality, systemic racism, or even your political views (which, racial issues are NOT political… but I find that people make it political?? idk..) just be sure to do your due diligence first. Listen to what people are saying and research the topics from trusted, impartial and unbiased publications. Just because you haven’t witnessed or experienced injustices due to the color of your skin doesn’t mean it doesn’t happen daily and doesn’t mean “this isn’t a color issue” Lastly, Remember- some of you may feel that the current issues in the world don’t affect you… but if you have a family member, friend, or even simply a community member that is a POC – this most certainly DOES affect you. Even if you have none of those…you still have fellow American citizens who need our help. This affects us all. 

Posted in autism, motherhood, parenting

Child Progress Reports

Posted on by Mom Boss

Eli, Age 7

After age 1, Eli started showing signs of regression in the little speech that he had. He didn’t respond to his name (wouldn’t turn and look at you when you said his name). He preferred to play by himself and often didn’t like when people invaded his personal space. He enjoyed lining up any objects he could. 

He started receiving speech services around 18mo. He was diagnosed with Autism at age 2. We moved to San Diego where he started receiving weekly speech and occupational therapy sessions, intensive Applied Behavior Analysis (ABA) therapy 20hr/week, and eventually started attending a special education preschool 3hr/day. Eli consistently used around 20 signs to express his wants and needs but had a lot of difficulty understanding and handling his own emotions. 

Eli finally started to talk at age 3 ½ and his language exploded. He went from baby babble to over 100 words within months. He was fully potty trained just after age 4. Since he was nonverbal for so long, potty training was quite difficult. After putting him in preschool settings, he became much more comfortable interacting with others and started to prefer playing with others versus his initial solo play. 

At age 5, Eli was in general education kindergarten with and IEP for speech and occupational therapies during school hours. He has an unbelievable vocabulary, can read and write at grade level, has a lot of friends, enjoys social interactions, and is just overall- flourishing. 

He still, of course, has areas that he needs to work on. 
-His speech still needs a lot of improvement
-He often writes certain numbers and letters backwards
-He has a hard time understanding and controlling his emotions. This often leads to
uncomfortable interactions with his peers. It’s my personal opinion that he is
emotionally younger than his peers.
-Eli becomes easily and extremely frustrated and upset at very minor
inconveniences (more so than other kids his age)

I put together a quick little transformation video of Eli’s progress from age 2 to age 7.

Camille, Age 2 ½ 

As soon as Camille came around I knew what signs to be on the lookout for. I made sure keep an eye on her milestones and make note of any delays. By age one, Camille had no words, some baby babble (but not much), was not playing age appropriately with toys and did not enjoy playing with others. I referred her to the Early On program when we moved home while my husband prepared for his third deployment. Her Early On evaluation found her with a high risk for Autism Spectrum and we started speech therapy services.

Her official autism diagnosis has been quite a long, drawn out process. It took 6 months to even get the evaluation, when we arrived, we found out that we were not completing the entire thing and had to be put on another 6 month waitlist to be seen by the behavioral therapist to complete her evaluation. Without her medical diagnosis, we are unable to start ABA therapy and other private therapies (insurance funded speech and occupational therapies). Before the recent Stay-at-Home order was put into place Camille had JUST started attending a special education preschool. She got a solid 4 days in before she was sent right back home. Although I’m sure she wasn’t too upset about it. haha

Camille is still very young and doesn’t have as much of a timespan of progress as her brother, but she has shown amazing improvement just in the past few months!

What she was doing:
-Did not play with toys appropriately. Would just hold them, sometimes knock them
together. Did not attempt to stack blocks, use shape sorters.
-No imaginative play. Wouldn’t make dolls or toys “talk”, wouldn’t pretend to drink
or eat play food, etc
-No social interaction with anyone except for mom. She would ignore other people
in the room, *sometimes* just sit back and watch others, mostly just did her
own thing
-Only showed interest in about 5 shows/movies
-No words at all. Until Age two Camille was almost silent. She barely even babbled.
After age two her babbling took off but was still just incoherent baby talk.

What she is doing now
-Camille started paying more attention to the movies and shows she was watching.
She began repeating lines from the show (her own baby babble version that
sounded remarkably close to the real word). Then she started singing some of
the songs from her Disney movies.
-She started to engage more in social play (with mom and brother) and eventually
enjoyed some action and reaction type play (ready, set, go- then race the cars)
-She started saying a handful of words, at first very sporadically and not on
command, now much more frequently
*Hi, Bye, Thank you, Mommy, yes, no, bubble, baby, hello, its me, outside
pretty, what, yeah
-Her play time has become much more age appropriate.
*Using more toys correctly (vs just holding them, knocking them together)
*Making dolls and Barbies “talk” to eachother
*Imaginative play (answering a phone, drinking and eating pretend food)
*Starting to color with crayons

Camille is a little too young for a transformation video. Since her progress is still happening… I was having a hard time putting something together to show you all. I still wanted to include her in this blog because I want to keep everyone updated on how great she is doing! So instead of a transformation video, enjoy these random videos of Camille…just being Camille!

Posted in autism, parenting, Uncategorized

…I think my child might have autism.

Posted on by Mom Boss

Are you noticing signs of delays in your child? Is your child nonverbal or behind on their developmental milestones? Are you wondering if maybe your child has Autism? Let’s go over some warning signs of Autism Spectrum Disorder (ASD) and the steps you should take!

*A disclaimer before viewing the warning signs… it is important to remember that autism is a SPECTRUM disorder… no two children on the spectrum are exactly the same. There is no definitive checklist for autism. The warning signs that I am about to give you are merely *common* signs.

Common early warning signs of Autism: 

Physical signs-

  • No speech or delayed speech
  • Repetitive speech or babble
  • Does not point to objects
  • Does not respond to his/her name
  • Avoids eye contact
  • Repetitive physical motions (hand/arm flapping, body rocking, spinning n circles)
  • Over/under sensitivity to sounds, lights, smells, tastes, and touches
  • Little to no social skills
  • Avoids or resists physical contact
  • Lack of safety/danger awareness
  • Lines up toys or objects
  • Plays with toys the same way every time
  • Prefers/focuses only on certain parts of objects (ex. Wheels)
  • Hyperactivity
  • Unusual eating and sleeping habits
  • Causes self-injury
  • Hyperactivity

Emotional/Mental signs

  • Lack of interest in objects or thing
  • Little to no imaginative play
  • Prefers to be alone
  • Difficulty understanding emotions (their own emotions and the emotions of others)
  • Easily upset by minor changes
  • Has obsessive interests
  • Unusual interests and behaviors
  • Extreme anxiety or phobias
  • Impulsive
  • Aggression
  • Meltdowns

*To reiterate, if your child has some attributes that are on this list, it does NOT mean they are definitely on the spectrum. On the flip side, your child may have little to no attributes on this list but could still have other indicators that may lead to an autism diagnosis. This list is merely a jumping off point from commonly seen signs. 

So if you still have concerns about your child, maybe they have a few of these common signs… what’s next? What are the first steps to getting answers? To getting your child help?

Here is my step-by-step list to starting the ASD process. 

1. Schedule an appointment with your child’s pediatrician to discuss concerns.

A. Generally a referral to a developmental pediatrician is needed for an autism diagnosis. Be aware that getting in to see a specialty pediatrician can often take a long time (upwards of six months). 

B. I suggest that while you wait for a medical evaluation to be conducted, you jump to parts 2 or 3 (depending on the age of your child) then return to 1c when you hear back from the office performing the evaluation.

C. The evaluation process can vary based on the office you’re using. (My son was only seen by the developmental pediatrician for about 1-2 hours, my daughter was seen by a developmental pediatrician, speech therapist, occupational therapist, and physical therapist, totaling 4 hours)

D. If the evaluation finds your child on the Autism Spectrum (or with another type of developmental delay) it can open a window for many fully or partially covered services under your insurance. 
-Speech therapy
-Occupational therapy
-Physical Therapy
-Applied Behavior Analysis (ABA) therapy

E. Get a referral from your doctor for the therapy services. You can do these therapies in addition to any Early Intervention or school services your child may start receiving.

2. If your child is between the ages of 0-3:

*Disclaimer: my knowledge of Early Intervention programs is largely based on Michigan’s program. It’s been difficult to find comparative data among all state programs, so take some of these details with a grain of salt and be sure to look up the steps for your specific State‘s Early Intervention Program!

A. Look up your State’s Early Intervention Program. All States and US territories offer early intervention programs, but each State’s program may vary from others. However, ALL Early Intervention Programs in the U.S. are completely free.

B. You can self-refer your child for an evaluation online

C. Someone from the program will reach out to you, send you profile questionnaires for you to fill out about your child, and get your consent for their program to perform an in-home evaluation.

D. Generally the program has a set amount of time from the moment you refer your child until the entire evaluation is completed. (Because every state is different, I’m hesitant to say that this is the case for every State’s programs. Michigan has 45 days from the time of referral to complete the evaluation.)

E. If the evaluation finds a need for services (speech, occupational, physical therapy, etc) State-funded, in-home services can begin. 

F. Services can run year round and your team will update your child’s plan yearly.

If your child is 3 years old or older:

A. Reach out to your School District’s special education department and discuss getting an evaluation for an Individualized Education Program (IEP)

B. Your child can get evaluated by a multi-disciplinary team. This team is made up of licensed professionals employed by the school based on your child’s specific needs (medical, physical limitations, learning delays, etc)

C. If the evaluation finds a need for special education services, the team can put together your child’s limitations, needs and goals into an IEP and school based services can begin. 

D. Beginning School services
-If your child is school-aged already at this time, They will receive services during the school day. The most desirable option is to have the child in general education classes and have them pulled out for short therapy sessions.
-If your child is not school aged yet, but has aged out of early intervention programs (so between ages 3-5) your child can still receive services through the school system, either in the form of a preschool, special education preschool, or a drop in therapy program, depending on what your school offers.

Educate Yourself

A. Do your research
-Look up the above things I just discussed (the closest developmental ped in your area, your state’s early intervention program, and your school districts website)
– Get in touch with your insurance company and find out your coverage information. Do they offer supplemental coverage for autism? What therapy services are covered? Make sure you’re aware of your copays and deductibles.
– Find credible online sources to learn a little bit more about Autism Spectrum Disorder. You can get good sources from your pediatrician, health department, and school district!

B. Find online resources
-I swear just go to Pinterest and type in Autism Activities and you will get a million and more ideas for sensory play, fine and gross motor activities, etc.
-Find parent support groups. It’s just just whining and bitching (I mean.. sometimes it is…) but they are also a great place to share ideas and resources!

Relax.

A. The hardest parts are over. Honestly, trying to navigate where to start and who to reach out to was probably the most overwhelming part for me my first time around.

Honestly, this blog took me forever to write. Not ONLY because I’m quarantined inside my very small house with my two very stir-crazy, needy children who will not let me sit at my computer in peace for more than 5 minutes at a time….. but because I didn’t want to spread false information. Although all of these services are available in every single state, I can’t say for certain that every detail of these programs will be exactly the same. I really tried to do my due diligence here. Perhaps if my children would let me get some more research time in I could actually pull criteria for every single state, but I have a feeling until I can get these kids back in school that’s just not in the cards. So if you’ve stayed with me this far, let me just say once more, PLEASE be sure to look up the programs and services for your specific state!

Happy Autism Awareness Month
Stay Safe and Healthy!

Early Intervention By State List

Multi-Disciplinary Team / IEP : More Information

Common Autism Warning Signs

Posted in autism, family, parenting

The Cost of Autism

Posted on by Mom Boss

In January we finally got to do Camille’s autism evaluation.

Now, I could go on and on about the inner workings of the four hour appointment, but that is not going to be the meat of this blog, so let’s just go with an overview.

We started the eval process in about July 2019. We had to go to their regular pediatrician for an appt and to get a referral. We went on the waitlist for the developmental clinic and finally got our appointment in the middle of January 2020. The day comes, and we get to the pediatric specialty clinic and we spent about an hour with each specialty. One hour with a developmental pediatrician, one hour with speech therapy, and a shared hour with both an occupational therapist AND a physical therapist at the same time. The time with all three specialists were pretty much all the same: mostly asking me questions and having me fill out scantron-style forms, watching Camille, and trying to get her to do certain tasks. I would say about 75% of each session was spent mostly just talking with me.

The evaluation is not even finished. We still have to get Camille evaluated by a behavioral therapist, who’s waitlist is six months long. WHY we were not put on their waitlist back when we got on the waitlist for the developmental clinic is BEYOND ME. Now, by the time we get in with the behavioral therapist, Camille’s autism evaluation will have taken one year to complete. Although I could write a whole blog about that and my annoyance with it, this isn’t the topic of the blog either.

This week, about 6ish weeks after Camille’s appointment, we got a statement from the evaluation appointment, along with the bill for the remaining balance. YA’LL….. The total for this *partial* autism evaluation was $1,846.48. 

Let me break the bill down for you:
Clinic (developmental pediatrician): $773.65 <—for ONE HOUR
Occupational Therapy evaluation: $305.61
Physical Therapy evaluation: $342.28
Speech Pathology evaluation: $424.94

Total: $1,846.48
Tricare Insurance covered 98% of the total costs
My remaining balance: $33

…Thank GOD for decent insurance! Who could afford that otherwise? I don’t know much about Autism coverage with insurances (outside of my own experience), but I did read once that a lot of states now are requiring major insurance companies to now cover some autism services, as it is becoming much more common (or should I say, more diagnosed/recognized). 

We have been very blessed with our Tricare coverage when it comes to autism services. When my son was two years old and diagnosed with autism spectrum disorder, we became eligible for a supplemental coverage within Tricare called the ECHO program. This program covers additional medical supplies, therapy tools, and specialty therapies that are not available with the general Tricare plans: you must have a medical diagnosis of some type to qualify for this program.

After seeing the cost of this evaluation (especially being in a rural location in Michigan vs an Urban city like San Diego) it got me thinking…what is the average cost of Autism in the U.S.? Are other people struggling like me? What if people don’t have good insurance like my family does?

*Disclaimer, this information came from about an hour of web searches, so I cannot confirm the validity of this data. If you have knowledge of more accurate data PLEASE let me know!*

The total cost of Autism Spectrum Disorder in the United States is $126 billion. The average cost for providing care to one person with ASD throughout their lifetime is $2.3 million (compared to $1.4 million for a healthy average functioning person). So what is this cost for? Obviously a bunch of different things that can vary for each individual person… that was a boring answer, so here are some of the main factors:

  • Regular doctor appointments
  • Specialty / developmental doctor appointments
  • Speech therapy, occupational therapy, physical therapy
  • Applied Behavior Analysis therapy
  • Medication
  • Childcare (some children with more difficulties can require specially trained childcare)
  • Parent’s loss off income for taking time off for therapies, frequent appointments, IEP meetings, etc

It’s safe to say that life in general is just so much more expensive these days. Medical costs for EVERYONE are insane. We all know that pharmaceutical companies make so much money off their horribly overpriced medications, but don’t let that overshadow all the other overpriced medical treatments in the healthcare field. 

When we were in San Diego and my son started Applied Behavior Analysis therapy (ABA), we were blessed to never have to pay a cent for the service. I did however receive the monthly statements showing me the hours, costs, and confirmation of payment. All I can say is… HOT DAMN. It was around $5,000 a month for ABA therapy in San Diego. (Because we are in Michigan at the moment, I do not have the physical records with me to give you an exact cost of this therapy, but that amount of money is not easily forgotten.)

Eli had two separate therapists (rotated days) that came M-F 8am-12pm and a case manager that came maybe about once a month. One of his daily therapists told me that they didn’t need any certain degree for their job and only made around $12-$15 an hour (in southern California!) Meanwhile, the case manager that came once a month for an hour would drive up in a nice BMW… So why the insane costs??? What is all this money going to? The actual therapists who get screamed at, hit, kicked, and are the ones actually doing the work aren’t getting the money they deserve, so who is getting it? The supervisors who have never met my child?

I think it’s worth mentioning that more often than not, families with a child with some type of disability usually have one of the parents leaving the workforce to become a full time caregiver to the family member, thus leaving the entire family to rely on one income. This, if you’ve followed my blog or know me personally, is the case for my family. I have been a stay at home mom for pretty much 7 years. Between in-home speech therapy, in-home ABA therapy, 3 hour special education preschool days, in-office therapy sessions, I would either need to have a costly full time nanny that I trust to transport my kids around all day or we need to take the loss of an income. What is a solution for this?

 This blog isn’t going to end with my grand solution to this ridiculous high medical costs dilemma. Honestly, I don’t really have any solid ideas at all. Could the government step up and create a solution? Doubtful seeing as how far in debt we are already… What we need is someone or some powerful agency/group and get a control on overpriced healthcare costs. Insurance companies should cover more specialty services. There should be more free state and federal resources for families with disabilities. Until a solution comes to light, all we can do is spread awareness and bring more light to the struggles that SO MANY families are dealing with on a daily basis.

https://www.autismspeaks.org/press-release/new-research-finds-annual-cost-autism-has-more-tripled-126-billion-us-and-reached

Posted in autism, family, momlife, motherhood, parenting

Parent Advocate

Posted on by Mom Boss

When we become parents, our roles as individuals shift. We no longer solely focus on ourselves; instead most of our efforts go towards our children. We feed them, change them, teach them, support them, love them. You are the one who shapes your child’s life the most; yet we cannot be with our children 24 hours a day. Do our parental duties end at our front door? What more can we do for them outside of our own homes? The main portion of our parental duties is 1 on 1, but what if we could push it farther than that? How can we reach our maximum level of parent? Well, we can move from a support role to an advocate role. 

Have you ever thought to yourself, “I wish they did it like this..” or “Why don’t they do this?” If there is something out there that you think could not only benefit your own child more, but others as well, what’s holding you back from trying to make it happen? Our parenting duties are not confined to our houses. 

There are so many ways that we, as parents, can advocate for our children. Now I cannot attest to each individual state and their own unique opportunities, but I can tell you about what I am learning within Michigan. 

I was recently contacted to be a parent representative for the Michigan Home Visiting Network (HVN). This program supports all state funded home visiting programs, and has a growing coalition to help families across Michigan. HVN brings together hospitals, clinics, tribal health systems, health departments, mental health agencies, early childhood educators, home visitors, and most importantly, parents together to improve outcomes for all mothers and babies in Michigan. Our main objective is to team up and put our different ideas and experiences together to increase the involvement and satisfaction of these programs. 

I attended a training with other parents and state workers from all over the state of Michigan to learn about this program and what our roles are going to be. This is not only a new thing for me, this is an entirely new program to the state of Michigan also! 

One of the main focuses on this training was instilling the notion that we are not “just parents”, but rather that we are parent leaders. We were all there because we wanted to take the initiative to make things better for our children, our families, and our communities. We discussed our individual strengths and characteristics that made us leaders as well as our personal experiences of being an influential parent. Now listen, I’m never going to say that I am a great inspirational parent. In fact, I usually ride the mediocrity line when it comes to parenting. However, the training we went to made me realize that you don’t need to be the best to be able to help others. Given the right tools and resources, we are all able to invoke real change.

One of our exercises was to make a Pi symbol on our paper and write ways that we are parent leaders across the top, write some of our personal characteristics that help us be great parent leaders on the left, and things we could improve on to be better parent leaders on the right side. There is no set of characteristics or past experiences that can make someone a great parent advocate. If you have a child in your life that you care about and you want better for them…that is all you need. Not only was this a great exercise pertaining to the HVN program and our actual training but this was also a great personal exercise. What makes ME GREAT??

Take some time out of your day and look into what you can do for your family. What changes would you like to see? There are opportunities out there, you just have to summon up the drive to find them!  I will get some resources together to help people find advocating opportunities that would work for them, whether its with the health department, school system, or even your child’s daycare! Let me see what we can find and make our communities better for as many people as we can!

If you would like any information about the Michigan Home Visiting Network or their parent representative programs please do not hesitate to reach out to my team advisor- Jamie Rushford- jrushford@lmasdhd.org

Posted in autism, parenting, speech therapy

Unintentional Learning Tools

Posted on by Mom Boss

We watch a lot of tv for a family with no cable. We’re too broke to pay ridiculous monthly payments with Direct Tv. The first 12 months are great but when your incentive period is over BAM! Your bill goes from $75/ mo to $200/mo How? Why? More importantly..for what? I watch HGTV, ABC, and E! My kids watch Disney Junior and Nickelodeon. And you want me to pay how much for 5 channels? Hard Pass.

In the age of Wifi and Smart Tvs we’ve moved on to a trifecta of internet streaming: Netflix, Hulu, and Amazon Prime. There are always new things added each month and Hulu posts tv episodes the day after they premier on tv. (Disclaimer: this is not an ad for any of these services, I do not have nearly the amount of viewers to make that happen..) Anyway, most of the time we end up watching the same shows over and over and over and over and over again. But nobody complains because all of us parents know that children are creatures of habits. They LIKE to watch the same thing over again so it really works out, except when they take off one of your kid’s favorite movies (R.I.P. Trolls on Netflix) The magical thing about this (and the reason for this blog) is my daughter Camille watches the same shows over and over again..she is learning to talk.

I am talking ALL DAY LONG to my daughter. You want a DRINK? You want MORE? MAMA. HELP. EAT. UP. DOWN. PLAY. BALL. BED. —Nothing. Then we turn on Finding Nemo and this little girl has the audacity to yell out BRUCE during the sharks little AA meeting scene. I popped my head out from around the corner like…..wut.

After that, I started watching her watching shows. Then I started recording. She knows so many lines to her shows. She repeats the lines at the exact time at they’re said, she has the correct pitches, correct sound, knows what lines are coming next. Sure, she doesn’t actually say the correct words, but it’s amazing nonetheless. She even started singing the songs. SHE SINGS SONGS! 

There is no better learning tool than face to face interaction. However, let’s be honest.. if your plan A doesn’t work, what do you do? Move on to plan B. This doesn’t mean I’m throwing out all my other tactics. I’m fusing them together. Something I’m doing (which let’s be honest I’ve always done) is using lines from Disney movies in real life to see if she will still get the connection. I downloaded all the songs from her favorite movies onto my phone and play them in the car to see if she will sing along. I am making this house a round-the-clock Disney movie. If Disney is what gets this girl talking then damnit, just call me Rapunzel.  

We’ve tried sign language, pecs picture cards, withholding things until she makes an effort to communicate. Everything we have tried so far hasn’t really had long lasting results. Then with no prompts, she recites and sings Disney movies and it’s honestly beautiful. Tonight as I crack open a Sunday night White Claw, I toast to you, Walt Disney.

“Word Party” on Netflix
Rapunzel- I see the Light
Word Party
Let it Go- Frozen