Autism Spectrum Disorder – Mastering Motherhood

My Fear of Raising Black Autistic Kids Today

Posted on June 8, 2020June 9, 2020 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.

autism, motherhood, parenting

Child Progress Reports

Posted on April 29, 2020April 29, 2020 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!

autism, parenting, Uncategorized

…I think my child might have autism.

Posted on April 13, 2020 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

autism, family, parenting

The Cost of Autism

Posted on February 27, 2020 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

autism, parenting, speech therapy

Unintentional Learning Tools

Posted on November 4, 2019November 4, 2019 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

family, momlife, motherhood, parenting, Uncategorized

Dead Ends.

Posted on July 14, 2019 by Mom Boss

So I’ve discussed my struggles with my daughter Camille. One issue that has been confusing, is for a while is her inability to climb. It took her a while to climb anything (onto furniture, up the stairs, etc) even after she figured how to get up she could not get down. Even small things like a 12” tall toddler bed, or stepping off a 4” tall treadmill platform. Whenever she is at the top of something (bed, top of stairs, couch, etc) she would throw something off and watch it fall. Which to me, looked like she was dropping them off to see how long it took them to reach the floor. Until she got used to them, she was hesitant crossing different floor types. She wouldn’t walk from our kitchen to our living room because she wouldn’t step across the different floor types. She used to stand and cry in one room until someone picked her up and set her down in the next room. We were standing in our school gym once and she wouldn’t walk across the basketball lines. One day we were in a garage and she wanted to walk outside and there was maybe a two inch lip from the inside to the outside. She had to get on her hands and knees and crawl out; when she very easily could have walked out. Her team of therapists (and me) thought she had some sort of vision issues, specifically maybe depth perception. It made a lot of sense.

So i scheduled her an eye appt with a pediatric ophthalmologist. I was dreading the appt, but also excited at the same time. I was nervous because how in the hell were these people going to get her to sit for an eye appt?? she’s clearly not going to look into the lenses and say which number looks better. Is it better at 1…or better at 2? 2 or 3? Not to mention the whole eye blowing machine that makes even my buttcrack sweat waiting for it.

Nonetheless, the day came and we walked into the office of the unknown. The staff was incredible!!! We got our own waiting room with a movie and toys! I strategically got some breakfast on our way so she could occupy her mind and stomach while we waited. The first thing up was dilating her eyes. We went into a room with a tech and I had to lay her down on my lap, face up. I basically had to pin her down while the tech opened her eyes and put a drop in each. As you can imagine there was a lot of wriggling and screaming but this process lasted about a min and we were sent back to the waiting room while her eyes dilated all the way. A little fun fact, children’s eyes take longer to dilate than adults. Additionally, brown eyes also take longer to dilate than other eye colors. So since Camille has both of those characteristics it took about 20-25 minute for her eyes to dilate completely. When she was finished we went in the room with the doctor.

This was probably the easiest eye appt I’ve ever seen. I sat in the chair with her on my lap. The doctor held up a spinny/light-up toy in front of Camille to keep her eyes focused. He looked in each eye with a handheld lens. He then took a flashlight and shined it in her eyes while also distracted. And That was that!

Despite the surprisingly easy appointment, the results were lackluster. The good news is, there is nothing wrong with her eyes. The back news is, we still don’t know why she’s doing her goofy little things! The ophthalmologist said her optic nerve is intact and her far vision looked perfect. I mentioned she was being observed for autism and he said it definitely could just be a little quirk of hers that could be related to autism. He basically told me to ignore it and it will go away. It’s always reassuring to know that your kids are healthy. But why do I feel disappointed? I think my mind set was on there being something wrong with her eyes. We’ll get her glasses and she will start blossoming! Maybe she’ll start playing with baby toys, walking better, signing better, climbing better. Now that the glasses are out of the picture, I’m back to square one trying to get her to reach new milestones.

All I can do is help her the best I can and wait. Only time will tell. Next month Camille has her two year doctor appt and her official medical autism evaluation! So despite hitting a dead end on this, we have many more paths to take with my sweet sweet girl!!!

family, momlife, motherhood, parenting, Uncategorized

When to seek early intervention

Posted on June 17, 2019 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

family, motherhood, parenting, Uncategorized

Round 2

Posted on April 30, 2019April 30, 2019 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!

family, parenting, Uncategorized

His Friendships Make Me Nervous

Posted on April 20, 2018 by Mom Boss

Eli has come so far in his social skills. His vocabulary is amazing and he is so smart. He’s more comfortable interacting with others at school and in our neighborhood. Although he’s had such amazing growth I am still very nervous about him making friends. Mainly because kids can be assholes.

Eli is still so very sensitive. The littlest things make him upset. Currently, our biggest issues with him is his crying. At school when he’s told to change tasks he often times gets upset and cries. If the toy he wanted to play with isn’t there, he cries. If I’m not standing on the sidewalk when he gets through the gate, he cries.

At home, if he’s not granted the snack he wants, he cries. If he’s told he has to turn off his iPad and go to bed, he cries. When we can’t go out and do the things he wants to do, he cries.

Most significantly, he cries a lot during interactions with his friends. Whenever there is the smallest disturbance with his friends, he usually ends up crying and running inside. No kidding, as I type this the boys were outside playing tag and Eli just came in crying because he was it (which he’s usually it) and he couldn’t tag the other boys and was getting frustrated so he started crying. Lately when he’s upset he tells his friend he doesn’t love him anymore, and they look at him a little funny. I’ve explained that love is for family and like is for friends. I get very nervous for him because he’s 5 now and kids that age start to judge.

One thing I would LOVE to fix Is the interactions with friends that make him upset. Sometimes Eli is justified for being upset with his friends. Often times when they play tag he is always it, he will finally tag someone and they immediately tag him back. The other kids are a little older and a lot more fast than him, it’s almost an impossible game. Sometimes, though, Eli’s fits are unjustified. One time some of the kids were getting ready to play four square. Eli didn’t want to play and continued playing with his cars. His friend told him to move over so he didn’t get hit- Eli took that as go away we don’t want you here.

So how exactly do you get your child to stop crying for non-crying situations? You can’t just tell someone to stop crying. He feels these emotions and runs with them. I love the fact that he’s so passionate; he generally enjoys life. The problem is that even though his highs are high, his lows get extremely low. The only good thing about his behavior is the blow outs never last long. When he’s upset about a situation he is usually over it within a couple minutes. For the time being, his friends seem to forget about it almost instantly, too. As soon as he’s calmed down and wants to go back outside, they welcome him.

Another issue my husband and I are noticing is that Eli isn’t standing up for himself. He is new to socialization so he just kind of rolls with whatever the other kids too. When his friend comes over here he runs the show. They do whatever he wants to do. Which is usually play with Elis Ipad or Wii. Which are both one player so Eli either watches or plays something else. All we can do for that is regulate or tell them to do something together.

Really I think my nerves are normal and to be expected. Any parent probably feels like this sometimes (right?). All I can do is guide him, give him advice, and let him learn on his own. Friendships can be hard, especially new ones. But there’s not a doubt in my mind that Eli will find some great friends that are a perfect match for him and he will be just fine.

family, parenting, Uncategorized

How to survive Spring Break

Posted on March 29, 2018 by Mom Boss

Spring break season is upon us. On the last day of school when Eli’s teacher said “See you in a week Eli!” I went into a mini panic mode. The realization hit me that I was going to be stuck in the house all day with two kids for 9 days straight. I immediately went into planning all the fun things we’d do to pass the time: go to the zoo, automotive museum, picnic at the park, splash pad. It’s now Thursday of spring break and guess how many of those we have done? ONE! The picnic at the park is the only thing we’ve accomplished so far; and I’m really not sure if eating Panda Express at a playground is necessarily considered a picnic.

Obviously I am in no position to give advice about what to do for spring break. But….who cares? I’m going to make a list of good ways to pass the time during your Childs spring break that I actually did do.

Continue with education- Just because they’re on a break from real school doesn’t mean their learning should take a break too! As a parent YOU are your child’s biggest teacher!

2. Find them new friends- what better way to pass the days than to make new friends, right? They will spend the day getting to know each other and having fun!

3. Household chores- Oh, you’re bored? Well I’m doing 5 loads of laundry, vacuuming 4 rooms, doing the dishes, and cleaning the bathrooms. TAKE YOUR PICK!

4. Wear them out- personally this is the most important one. If you want your little shits to pass out at the end of the day then you need to get them outside and active. Nothing knocks a kid out better than long exposure to fresh air. 60% of the time, it works every time!

5. When they’ve done chores, played with friends, and ran around aimlessly for hours outside, it’s time for some more inside diversions. Popcorn movie party is the go to in our house. Here’s your apple juice, bowl of popcorn, and the remote; I’m going to go hide in my room until you come find me asking for a second bowl of popcorn.

6. When you’ve done all these and your kids finally pass out. It’s time to reward yourself. Whatever your vice is, indulge; you’ve earned it. For me, the answer is obviously wine.

Hopefully after doing all these steps your child should look like this and spring break should pass quickly. Before you know it your monster will be back in school.