Tag: 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
Posted in family, momlife, motherhood, parenting, Uncategorized

When to seek early intervention

Posted on by Mom Boss

Let me begin with a disclaimer. I am NOT an expert, I did not go to school for speech and language pathology, I am not working in the field in any way. I am simply a mother of two children with speech and language delays who has been through this and has done her research. I hope after reading this, if you feel concerns with the children in your life, that you will do your own research and seek the services available to you. I will attach links at the bottom where I got my information!

What is the difference between speech and language?

Language is the entire system of words and symbols (including written, spoken, or expressed through gestures and body language).
Speech is the actual sound of spoken language, including articulation of words/sounds. 

Since there is a clear difference between speech and language it is important to know that there is a difference between a speech delay and a language delay. 

[Examples]
Language delay Child may not be communicating (whether its via talking, sign language, gestures, etc) the way they should be at their age.
Speech delay Child may use words and phrases but is difficult to understand

All that being said, when should we start to notice if our child has a speech or language delay?

Before 12 months– Babies should begin cooing and babbling. By 9 months babies should be putting sounds together, using different tones, and say simple words like “mama” and “dada”. Lastly, before their first birthday, babies should pay attention to sounds and recognize the name to common objects (bottle, pacifier, mom, dad, etc).

12-15 months– Babbling at this age should have a range of speech sounds in their babbling (examples being P, B, M, D, N, etc), they should start imitating sounds and words, say one or more words, and follow one step directions (example- pick up the toy).

18-24 months– Most toddlers in this age group can say around 20 words by 18 months and at least 50 by 24 months. They should begin combining 2 or more words to make short sentences (Mama come, dad help, etc). Should be able to identify common objects and body parts when asked. By age two, children should start to follow two-step commands (pick it up and give it to mom.)

2-3 years– Over this year, most children have at least 200 words in their vocabulary (and as high as 1000 words!), begin to use 2-3 word sentences, say their name, use their personal pronouns (I, me, my, mine), and can be clearly understood by close family and friends. 

At this point it is important to know, (and I’ve said this before), EVERY CHILD IS DIFFERENT. The data above are of the average development for children in those age groups. Maybe your child hasn’t met one of the guidelines for his/her age group, that’s OK! It doesn’t necessarily mean that something is wrong. You may see that in a few more months they have caught themselves up and are blossoming! On the flipside, they are also made so you can know when your child is not blossoming. 

If your child is not meeting these developmental guidelines it is important to take action into your own hands rather than waiting for someone else to do something about it. I self-referred both my children to state programs. You don’t have to wait for a doctor to bring it up to you. Don’t be afraid to speak up. I know personally that it can be very scary when your child isn’t developing the way they should be and that it can be easy to overlook that there is an issue at all. However, it is our duty as parents to do everything we can to make sure out children grow and learn the way they should be. 

Each state has their own federally mandated, state funded early intervention program, including Puerto Rico, Guam, US Virgin Islands, Commonwealth of Northern Marianna Islands, and American Samoa. Follow this LINK to find the contact number for your state. These programs have been a lifesaver for my family. Now, I am not familiar with each specific state’s program, but they are all completely FREE and work with children from birth-3 years. After the age of 3, children receive free benefits from their local school systems. If your child is in school, they will receive services during the school day, if your child is between age 3-5 and not yet in school, they can still receive free services at the school or, in some places, they may receive school services at their daycare/head start (if enrolled). 

I hope that some of this helped someone out there! 

https://kidshealth.org/en/parents/not-talk.html

https://www.mayoclinic.org/healthy-lifestyle/infant-and-toddler-health/in-depth/language-development/art-20045163

Posted in family, motherhood, parenting

Explaining Death and Loss

Posted on by Mom Boss

When I was 16 I took a trip to our local animal shelter. I found a sweet 9 month of German shepherd mix, Brandi. I don’t often believe in love at first site, but believe me when I say- it happened for me that day. I am a firm believer that pets our family. Rescuing dogs is such a rewarding feeling because these dogs are so grateful for you. Some rescue dogs don’t know what it’s like to have a home,  to be warm, to be loved. If any of you have gotten rescue dogs, you know that it’s not always sunshine and rainbows. These dogs are often skittish, defensive, and untrained. It takes a lot of patience to raise a shelter dog.

When I started to have children of my own, she wasn’t exactly keen on the idea. Small children made her very nervous. She always wanted to be around them (and me) but wasn’t very affectionate to them, she was very defensive. That being said, we did separate her from the kids unless we were there to supervise. Because of this, my children were never really close with my dog. They both still got the love they needed from me, just not with each other.

13 years after I took her home from the pound we found ourselves having to say goodbye to my “first born”. Very common with shepherds, she was losing strength in her back legs, she was losing a lot of weight, and also losing her hearing and vision. There is never a right time to say goodbye to your pet.  You don’t want to say goodbye too early, but you also don’t want them to be in pain or suffering. It’s an impossible decision, one that I did not want to make. With heavy heart I scheduled her to be put down.

Introducing death to children

We have experienced death once before. My grandmother died December 2018 when my son was 4. It was very difficult for him to understand back then. The only thing he did really know was that I was flying back home for a week and he had to stay in California with his dad. To him that was the only part that mattered, which to me, is very age appropriate. 

To prepare my oldest about Brandi, I told him that she was getting sick and was going to die soon. Eli, who is normally very emotional, just kind of shrugged it off. It kind of caught me off guard but he wasn’t that close with her, so I let it go. A couple minutes go by and Eli casually says to me, “Mom, when Brandi is dead, can we put all of our toys in the middle of the yard?” uhhhhhhh, sure. 

The day we planned to put her down, I took one last swing at explaining things to him. I again said that she was sick and that we were taking her to the doctor and we were putting her down. He didn’t really say much again. He did tell me that it made him a little sad but he would forget about her. I said well of course you will, you’re only 6 and you weren’t that close with her. It would be totally normal to forget about her. What he said next just blew my mind. After a beat he says “When you die I will probably forget about you too.” I said well I hope not!!!!!! To which he replied “I will just find another lady and say ‘will you be my mom because mine is dead.” Lol WHAT!? 

Listen, 6 years old is still very young to understand death and dying. I know this. I also know that it is very easy for children on the spectrum to view things as simply black and white. They can often be very blunt, have difficulty understanding and processing their emotions, and usually don’t react the same way as average functioning people would. If Eli’s ipad dies while he is in the middle of a game, what does he do? He is up in arms, falling to the ground, sobbing, he’s inconsolable. When it comes to the death of a family member or pet, not even a single sad feeling. I think this is the beauty of children. They don’t understand life yet. They are innocent. No real understanding of life, death, hardships, tragedies, war, etc. Of course, I’m not speaking for all children. There are definitely children who have lived these, and understand these. But When I look at my children, I see innocence. One day they will get to the point where they know and understand these things.

My children will one day feel true pain, and when that day comes I will be here, I will be ready. In the meantime, all I can do is mourn the loss of a dog that was in my life for over 13 years. The day I put her down will forever be etched in my memories. 

To Brandi- I love you so much. You were a beautiful, loving creature. You were my best friend and my “first born”. You are irreplaceable. 

Posted in family, momlife, motherhood, parenting, Uncategorized

Which Mom are You?

Posted on by Mom Boss

When we’re young we all think of the mom were going to be. When you picture yourself having kids, what do you see? For me I always imagined walking down the sidewalk with my daughter, picking flowers, matching outfits. We’d play toys together, make cute Pinterest crafts, read books, make health snacks. My kids would spend most of their time playing outside than on screens and I would still have time to be the same me. (spoiler- a lot of those didn’t happen.)

I’m sure at some point all of us have said or thought the phrase “I would never be like that when I’m a parent.” Let’s all laugh together. The thing is, you never know what kind of parent you will be until you are actually a parent. There are a lot of factors that contribute to who you are as a parent.

The era/generation you live in impacts what type of parent you will be for sure. I became a parent when technology really boomed, so it’s no surprise that I find a lot of parenting tools in iPad apps (ABC mouse) and Netflix shows (Word Party). There is also a lot of hype in anti-vac and gluten free lifestyles now-a-days that weren’t really thought about 20-30 years ago.

Who you had as parents shapes who you will be as well. A lot of times you tend to morph into your parents. Have you ever said that you would NEVER do something that your parents did when you have your own children, then 15 years down the road you catch yourself saying the EXACT same thing they once said to you. Circle of life my friends. This one can work the exact opposite as well. Having a very strict upbringing could cause someone to be very lax and open with their own children.

What type of children you have can also shape your parenting style. What do I mean by that? For ME PERSONALLY- having two children on the spectrum changed the way I raised my children dramatically. My children have trouble listening/comprehending and difficulty processing emotions. I’ve had a very difficult time sitting down and reading books with them, being able to enforce rules, even sitting down to play with my children-something so natural- is usually a no-go.

Who you are as a person is probably the biggest thing, and the most predictable. If you are a generally health person, hands down your kids will reflect that. Someone who eats extremely healthy will try and instill that on their own children. If you had anger issues before children, seeing a whole poop diaper smeared into the carpet probably won’t make your anger issues better. If you’re a type A person, odds are you will be a type A parent. Of course, this isn’t true for everyone either. As I said before, you never know the type of parent you will be UNTIL you are a parent.

For fun, I thought of some “Mom types” and decided to turn myself into some and write their bios.

Sandra, 42
Been there, done that Mom. She is the veteran mom, the wise owl, the unshockable. She’s lived through everything. She’s cleaned poop out of places you would think is impossible, her children have had a total of 6 broken bones, she can handle the chickenpox with her eyes closed. Sandra is the friend you go to when you have the most random parenting question, which she will answer without hesitation and never judges. Her house is always filled with the best snacks….and wine

Kaylynn, 28
Crunchy mom. Organic, gluten free, dairy free type mom. Her favorite past time is going to Whole Foods. She’s an antivaxxer and loves to let you know by posting 4 antivaxx links a day on her facebook. Her three children all sleep with her in bed, forcing her husband to sleep in the guest room. Her bake sale specialty is flourless muffins. She always gives advice when not asked and openly judges all of your “toxic” lifestyle choices. 

Cathy, 35
Sideline mom. She has four boys and can be found screaming on the sidelines of her children’s sporting events no matter the season. Cathy is not afraid to speak her mind. Her go-to saying is “Get your eyes checked ref!!!” Everything in her house is sticky. She’s lost the will to clean up after disgusting boys all day. Despite her usually serious attitude, she’s actually a pretty good time. Her usual drink of choice is a Miller Lite but loves her cosmos on girl’s night. 

Bethanny, 31

Type A mom.
You can set your watch by her family’s routine. Bethanny runs the house and everyone knows it. There is never a shoe out of place, but lord help us if there is. The calendar on the fridge is color coded and filled to the max. Her husband, James, doesn’t really care for schedules but it’s not worth the fight. He does love the morning smoothies she makes him every day though. She’s a stay at home mom but is almost always dressed in business casual. Her children fear her, her neighbors respect her, and the school faculty hate her. She doesn’t have many friends and isn’t sure why. Also, don’t call her Beth. She f***ing hates it. 

Katie, 27
The relaxed mom. Katie doesn’t mind messes, she’s not dirty, but her house generally looks like children DO live there. I mean, DUH. She makes plans and schedules, but doesn’t really blink when they get messed up. She’s usually pretty relaxed and easy going, but don’t test her because she WILL lose her shit on you. She disciplines her kids but also can get too persuaded by their emotions. Sometimes it’s just easier to give them the cookie, right? After homework is done she really doesn’t care what her kids do. There are no ipad or TV limits in her house. She makes the best friend because she is very laid back, doesn’t judge, and makes a killer taco dip.

Meadow, 25
Hippie mom. She shares a lot of characteristics with the crunchy mom. She is a vegan and there’s not a thing in her fridge that is not organic. Meadow is a child of the Earth. Her children spend most of their times outside and barefoot. She is a firm believer that you learn so much more from experiences than you do in school. She homeschools her children and the backyard is their classroom. She considers herself a “Free-range” parent. She lets her children make their own decisions so they can learn from the power of their free will. Whatever that means. She has a lot of friends, probably because she makes good weed brownies. 

Brittany, 31
Pinterest Mom. The title says it all. Her Pinterest account has over 50,000 pins in all categories. Recipes, school lunch ideas, DIY projects, party themes, outfits, nursery decor. Think of a category, and she’s pinned something for it. Unlike the rest of the world, she pins things and ACTUALLY DOES THEM. The audacity. She wets herself when she gets invited to a potluck or when her children’s school is having a bake sale so she can use her newest pin. When most of us try projects we got off Pinterest they turn out disastrous, not Brittany. She was born crafty, and hits her DIY out of the park every time. She is one of the most popular friends and loves when they ask her to make something for them!

Katrina, 19
The Newbie. Matching mother-child outfits, hair and makeup done every morning, really shooting for the “perfect mom persona.” She’s a first time mom and it is completely obvious. The girl that’s always in the Facebook mom group asking “What do you think this rash is?” or “My son fell and hit his head, should I take him to the ER?” She is just so unsure of herself, and that’s NOT A BAD THING! She just wants to be a good mom, and doesn’t want to make any mistake. The thing she needs to learn is that making mistakes is what makes us a mom. She has a TON of friends, but she’s the only one with a kid so far. She tries to make friends with veteran moms at the playground, but doesn’t know how to connect with them yet.

Tammy, 36
The Everywhere Mom. Classroom mom? That’s her. PTA? She’s on it. Soccer team needs snacks? She’s got it. She’s a stay at home mom and her kids are everything to her. If there is anything to do, she’s got it. Same can be said for her friendships. People don’t understand how she has the time or the energy to do the things she does. She makes it seems so effortless. Though she’d never show it, Her energy tank is on zero. She averages about 4-5 hours a sleep a night, usually because she’s up baking cookies for something. If you’re looking for a dependable friend, Tammy’s got your back!

Melissa, 31
The princess mom. Her husband is a CEO and makes more than enough money, so Melissa can stay home to focus on the children. The problem is, she’s not exactly the maternal type. Needless to say, the kids are wild and spoiled. Melissa spends most of her days getting her nails done and shopping with friends. She is never seen less than perfect. She knows all the town gossip. She has very high standards for all things in life, including friendships. Probably why she doesn’t have many girl friends.  Her children have straight A’s in school and are fluent in Spanish; thanks to the nanny, Maria.

Posted in family, motherhood, parenting, Uncategorized

Round 2

Posted on by Mom Boss

When Eli was Diagnosed with autism around 4 years ago the doctor told me there would be about a 20% chance of my next child also having autism. (Yes people, genetics, not the measles vaccine. So vaccinate your kids!) So, when Camille came around, I watched, listened, and observed everything she did. A rule of thumb of parenting is never compare your children to other kids (yeah, right.) It is a very important rule to follow though. Every child develops at their own pace. Just because little Timmy is walking at 9 months does NOT mean your child is behind because she is not doing it yet. If your nephew is speaking three word sentences at 12 months it does NOT mean your own son is behind because he can only say 5 words total. Our children hit their milestones at their own pace. They will deal with peer pressure in grade school so let’s not instill self-esteem issues yet!

All that being said, when DO you start to worry about where your child is developmentally? I don’t believe there is a real answer for that. I think, as a mother, you just know. 

Today’s world makes it so easy for parents to get their children evaluated for FREE through the state. Each state has their own fully funded programs. In Michigan, we have the EarlyOn program. When we arrived to Michigan I didn’t waste any time getting Camille evaluated.

So what was it about Camille that made me get her evaluated?

-Her gross motor milestones were always met, but a little behind
-Babbling was very delayed. She didn’t start actively babbling until around 18mo.
-She doesn’t play with toys as expected- she prefers to just hold items and walk around with them. She chooses to play with household items (shoes, dusters, etc.) vs baby toys. For a while between 12-18mo, she would only open and close doors and cabinets for entertainment.
-She walks very cautiously. She does not walk on uneven ground (grass, sand), she is uncertain when stepping across different floor types or over lips/lines.
-Does not climb on/off furniture. She does not attempt to climb stairs. She cannot get down from very low furniture (example- her 12′ toddler bed.) She will drop an object to the floor to judge how high up she is.
since becoming diagnosed she has attempted the stairs and crawling on . some furniture.
-She does not like a lot of touches- face wipes, washing hair, diaper changes, etc.
-She does not respond to her name or react when spoken to.
-She does not recognize or interact with other children/adults. She will allow other to be in her general proximity but other than that she does not pay them any attention.
-Little eye contact
-No mimicking. She does not copy other’s actions, repeat sounds. She will not point to objects.
-She likes thin items on her lips and around her mouth. Hair, hair ties, shoe laces, strings, etc. I would like to clarify that she doesn’t eat or even chew these things. She just likes the feeling of them on her lips.


To someone who has no experience with any of this, the evaluation process can be very, very overwhelming. There are so many people involved, multiple evaluations, and lots of paperwork. With my first born, Eli, I remember feeling overwhelmed, scared, sad, so many emotions. I felt unorganized. With Camille when the people involved started over-explaining the process to help me understand I politely said “Listen, this isn’t my first rodeo. I’m good. Do ya thang girl.” Honestly the best advice I can give to someone going through this the first time- relax and take the backseat. The professionals with these programs know what they’re doing. They help you every step of the way. The best thing a parent can do is get out of your own way. Let them help you with everything. 

After Camille’s evaluation process, she was placed in the moderate-severe autism range. Because she was evaluated through the School system/ EarlyOn program, this is what’s called an educational diagnosis. In another blog I will get into the difference between an educational diasgnosis of autism vs a medical diagnosis. The important thing to know for now is an educational diagnosis determines if a child meets the qualifications needed to receive special education services through the school system and is not a “firm diagnosis”. A medical diagnosis is a true diagnosis and opens the door for insurance supported therapy services.

So now what? We start by making a list of goals to work towards. For example, one goal is to get her to make independent choices for meals by using picture cards (PECS). Another is to get Camille to play more with age appropriate toys vs household items. We focus on the areas that are most important to improve. Keep your expectations low! Sometimes they take a while, AND THAT’S FINE!

Additionally, Camille is receiving in-home speech therapy. We will also soon begin occupational therapy, and perhaps Applied Behavior Analysis (ABA) therapy. 

Getting an autism diagnosis for your child is a very overwhelming, scary thing. This, however, is one that I was waiting for. I knew the odds and I was prepared. If anyone can embrace this challenge for a second time, it’s me. I am ready for this next chapter in my parenting world. I look forward to sharing this journey with others and hope that by telling our story, we can help other parents out there who may be going through something similar!