Why I Talk About Her Diagnosis

Autism Awareness Month is less than a month away and talks of Autism will be filling the air. My social news feed is already blowing up with reminders to either start a walk, raise money, and light it up blue, all in the name of Autism Awareness.

Granted, it's imperative to talk about Autism and do these things throughout the month of April, but what about now or after the blue lights fade? You see, I am one of those parents who constantly talks about her daughter's autism diagnosis to anyone willing to listen. I do this on a daily. Why? Why in the world would I share something so personal with strangers who could potentially use my words against me? 

Well I'll tell you why, but first, get it. I understand why some families are very selective as to who they share their child's diagnosis with mainly due to preconceived labels and judgements and what a shame this is to feel such a way.

For instance, if someone wants to keep my daughter or family in a label bubble or decides to not associate themselves with us after learning Autumn is autistic, guess what, that's their problem, that's on them. Also, what kind of friend would that be? Honestly, would anyone want to be friends with people who are afraid of autism or anything else that may not fit into that perfect box image? I didn't think so. Plus, I truly don't care what people think of me and my family. If they want to judge us or not associate with us because we're a special needs family, oh well. Their loss. Our gain. 

In addition, how are we supposed to support a world full of inclusion, awareness, and acceptance if we don't talk about the diagnosis? If we are so afraid to let that cat out of the bag that it holds not just our families back at being able to try new things, but it hurts the child and/or individual we are advocating for? 

We as parents and caregivers are responsible for creating a world where our children should have every opportunity to excel despite autism or any other disability. By talking about the diagnosis and then educating others about autism (or any disability for that matter), we encourage more sensitivity and understanding. We break down barriers and remove stigmas one step at a time. We open the eyes and minds of others who may now go throughout their days being less judgmental towards that parent with the screaming child in the store or down the street. We open the pathways for love and acceptance as well as kindness by sharing our journeys. 

This is how we change the world. It's a 365 day a year ideal, not just only promoting this belief throughout one month. 

Lastly, I talk about my daughter's diagnosis because I'm proud of her and all that she is. Autism is a huge part of her life and our everyday struggles as well as triumphs, but it isn't our entire worlds. I want people to see that autistics are more than autism. They can love, enjoy being around others, communicate their needs, have hobbies, and live fulfilling lives with/without support. That Autism isn't a one-size fits all glove like so many people assume. Like a beautiful snowflake, autism is just as unique. 

So the next time a stranger starts asking you questions about your child, don't be afraid and share with them their diagnosis. You might even make a new friend that day or at least you did your part in promoting awareness, acceptance, and love all for the greater good at making this world a more sensitive and caring place. 

Xoxo,

Trish 

Having It All: When Love is Simply Enough

Becoming a mom was something that I desperately wanted to experience. I knew before having Autumn that my life would forever change, that I would face challenges, but at the same time, triumphs. I knew that I would forever embark on an insanely-beautiful journey filled with hope and tears, but in the end, it would all be worth it.

When Autumn was born, I could see my life flash into her eyes. I was unknowingly hers: to serve, to protect, to help prosper, and to eventually let go so that she too could relish in all that life has to offer. I knew that loving Autumn would be simply enough no matter what obstacles we would face together.

So here I am, almost five years later, and I feel a bit wiser, but I also feel lost at times due to not having all of the answers and trying to find a balance within to keep my zen in check.

Over the course of her young life, I’ve learned some harsh truths regarding motherhood and the unpredictability that often resides within this place. The unfortunate loneliness and pain that all mothers endure. This battle within to find a balance, to be able to “have it all”, that often leaves moms feeling overwhelmed, bitter, resentful, and depressed. Thus, can mothers truly “have it all”? I don’t know. It’s that personal question that we, as moms, have to each define within our own journeys.

I knew that I thought I could “have it all”. I truly did. I thought that I could work as a counselor, manage my own private practice, and still be done in time to pick up Autumn from school and to make a delicious homemade Pinterest meal for my amazing husband to enjoy. I thought I could manage being both the backbone of our family as well as a wingwoman, standing alongside my husband, working together, so that he didn’t have to carry that heavy financial burden onto his shoulders alone. I thought that Autumn would be able to attend a childcare program, relish within piano lessons, ballet, and a Montessori curriculum, all before the age of 5. I thought that I would be one of those moms that my friends would admire for keeping a clean home and managing playdates filled with imaginary play and wholesome snacks for the kids, for whom I would inspire, that as a woman and now a wife and mother, I can truly do it all and have whatever I wanted without having to make major sacrifices elsewhere.

Boy was I wrong! As John Lennon stated, “Life is what happens to you while you’re busy making other plans” couldn’t be truer than words. This, my friends, has been my life to-date and probably most of yours.

What changed for me was when I knew something wasn’t “right” with Autumn around the time she was 18 months old. Since she wasn’t meeting her developmental milestones, I got early intervention involved because of my concerns. When she was diagnosed with Autism right after her second birthday, I knew then that my life would forever change even far greater than I had originally imagined when I became her mother on the day she was born.

I decided to put my counseling career on hold and focus solely on my daughter and her overall wellbeing. I knew right then, she needed me the most over anything else within my life and that I would have to make personal as well as professional sacrifices in order to put her needs first. I knew that I couldn’t dedicate myself entirely within the counseling profession when Autumn required so much personal time and care. Almost three years later and I’ve somewhat changed career paths and continue to work around Autumn and her school schedule, and guess what? No regrets because my love for Autumn became far greater than any monetary gain or professional title could provide.

I was the one from the start to raise my daughter, to see her walk, to hear her first words, and to see her excel within her therapies. It’s definitely not the life I had originally envisioned for both Autumn and myself, but its been so much better. I made my choices and have learned to accept them wholeheartedly and now without regret.

When I became a mom, I willingly signed up for this life and all that it would entail. I have learned throughout my own personal grief, guilt, and depression, that it’s okay to struggle, to feel the pain of frustration, isolation and loneliness, but to not stay in this place for long, because I’m never truly alone and that help is right around the corner. That it’s okay to have imagined a different life for my child and myself and to feel jaded at times that things have turned out uniquely, but to not stay in this place for long because I’m strong and worth so much more than to allow my negative thoughts and emotions get the best of me. Plus, my life is pretty darn good.

I’ve also learned that becoming a mother doesn’t mean living for me is over. That I need to take care of myself and find the time to do so, even if that means dust on my tables, dirt on the floors, takeout for dinner, and laundry piling up in the baskets and hiring a babysitter for just a few hours of solace, and guess what: No Regrets. What’s that saying, “a clean house is a sign of a wasted life”? I don’t know about that (insert my own OCD here), but when Autumn wants to go outside and play or build legos together, to me, that’s more of a priority as I know these moments wont last for long and someday she will ask for me less.

I have learned that life is too short to waste away time obsessing over longing for “the perfect life” and “having it all”, because I have so much more to be grateful for that can’t be measured by societal terms and expectations, including letting go of my own grandiose ideals of what “motherhood” should resemble because I’m worth so much more. I’ve learned to stop being so hard on myself and that I still have room for growth. If I mess up today, I take responsibly and move on from my mistakes a little wiser as tomorrow is yet another day and another blessing. I still don’t have the balance thing down, but that’s okay. Life is a process and I am not a finished product.

Thus, to all of the moms out there, please promise me one thing: stop being so hard on yourself and start seeing your own worth. You are the most perfect being. You are authentically human. You are full of a wealth of knowledge, love, and hope. The choices you’ve made up to this point may not be what you had originally desired, but own them. This IS the only life you get, so live it and by God, please put down the vacuum cleaner for now, don’t respond to that work email just yet, go have another cup of coffee, eat that piece of cake, snuggle with your babies in your pjs all day, and enjoy this moment because tomorrow will be gone before your know it.

Bottom line: you DO have it all. Your love is simply enough.

Xoxo,

Trish

(My #fbf pic of Autumn and me on the beach)

2015 Year In Review

Another year in the books...and what a pretty good year it's been for my little family. 

The positives

Autumn became officially potty trained and has maintained being potty trained in all areas as long as she goes before bedtime. That was one of the biggest hurdles, but as with everything Autumn, once she was ready, she was ready. 

Autumn also started preschool full-day this year. It's been quite the adjustment, but so far she's doing pretty well. She enjoys the routine and structure that school provides and she loves her classmates who have already become life-long friends. 

In addition to the above, Autumn also learned how to swim. She attended swimming lessons from March to November as well as swam in our pool over summer. She LOVES the water. Watching her during her swimming practices became a favorite past-time of mine that even though we put her swimming lessons on hold for winter, a huge part of me wants her to attend them again because she loves swimming so much. 

There were also other little moments throughout the year that brightened this mother's day: 

Reading to her class on her birthday and Autumn being extremely excited and welcoming to my visit. Hearing her tell her daddy that she loves him for the first time and meaning it. Seeing her embrace her grandparents and other relatives without it being forced. The joy and laughter on her face while playing with her cousins. Trick or treating on Halloween. The most special moment for me: her little smiling face looking out the window on her bus ride home, waving and saying "mama". 

2015 wasn't a year filled with any major anniversary milestones, big birthdays or festive celebrations, and vacations. It also had some rough moments as well. 

Autumn having a few ear infections and administering her meds became commonplace. She also probably had the croup as her momma also ended up with laryngitis, which is the adult form of it! A month later, and my voice is finally getting back to normal. 

Aside from the sickness that circulated our household throughout the fall months, we also started to see a different side of Autumn. Her rigidness and need for routines and structure has become worse to the point that she will go into a full-fledge meltdown if things aren't precisely where she wants them to be. Her scripting and perseverating has also increased. Her aggression as well. Then there's the bus situation that has all of our heads spinning as Autumn loved riding the bus until one day that changed and we don't know why. 

Even though Autumn's overall communication has become better with time, her OCD-like behaviors, including her sensory issues and screaming meltdowns, have become worse. Of course I wonder if I should take her back to her private OT too in order to help break some of these new sensory concerns she's been experiencing (even implementing the appropriate sensory tools at home for this seeker isn't always enough). 

However, her weighted blanket has been a godsend for nighttime and bedtime routines. A follower on my blogpage suggested laminating pictures and providing a picture book for the bus ride to/from school to help with the bus when she returns next week so that's what I've been working on (I even bought a laminator machine to help). I've even come to the conclusion that I may have to take her to school daily again if that helps some with breaking up her bus ride. Whatever it takes to get her over this hump, I'll be willing to try! 

Overall, 2015 was a good year for me personally. The goals I set forth in regards to implementing a healthier lifestyle were achieved. I was able to loose approximately 25 pounds and maintain my weight loss. In addition to, I was able to jog/run several 5k without stopping, but realized along the way that running is hard on my knees so I prefer to jog and do interval trainings instead. I also reconnected with my love for swimming and enjoyed much time swimming over summer alone and with Autumn. 

I've been able to maintain working part-time as a therapist for early intervention while also being a SAHM/housewife when I'm not seeing my families. Finding a balance in all of the above has been the biggest challenge to date. It's exhausting some days, but I'm managing! 

Thus, for 2016, I plan on focusing more time on bettering myself in order to continue being the best mom Autumn needs. I hope to spend more time off-line and with my family and friends. I also want to get back into working within the mental health profession, even if it's just one day a week, because I miss being a counselor and want my professional license someday too! Still, despite some of my feelings I've been having regarding EI and trying to be more separate, I know that my families need me and appreciate my journey. They learn from me and I learn from them. It's a team effort for sure. Therefore, in 2016, I will learn to put the "autism mom" cloak aside at times when necessary and to also step out of my shell, even if the outcomes may be downright frightening. I need to do this for Autumn. I am learning that despite her autism and some of the troubling behaviors she's been experiencing, I can't continue to segregate ourselves from the rest of the world. 

Thus, we will be going out more, do more family fun things, going on a few vacations- one, which will be to visit family out in IL for Easter and despite this being the most scariest thing we've (my husband and me) done with Autumn, we have to do this for her. 

I'm sure in 2016 I'll have my moments, my ups and downs in regards to life, but I have a feeling this will be another good year for the most part and like everything else in life, I'll be taking things one day at a time while cherishing the present. 

So here's to another year filled with good health, hope and happiness, less drama and sadness, minimal anger, but more love, strength, courage and faith. May we all find a bit more solace in 2016. 

XOXO,

Trish 

(Our only good family picture taken in 2015 by our lovely neighbors-Me thinking 2016 a family photoshoot is in store!)

 

My Favorite Things: Top Educational and Therapeutic Tools For Early Childhood Development

As an early intervention therapist/behavioral specialist who primarily works with young children and as a mother to a young autistic daughter, I am always looking for the best learning tools to utilize during my therapy sessions as well as at home. 

The below is a very detailed list of my all-time favorite things (with pics and my personal descriptions) that I use during my therapy sessions and at home with Autumn. Lots of overlapping between developmental, PT, OT and Speech here. 30 items to be exact with some honorable mentions. Just too much to narrow down to a smaller number. 

As always, supervision is highly suggested and required for pretty much all of the items mentioned below (use common sense as well). 

In addition, please feel free to share this information with your family relatives and friends this holiday season who may be asking you what to get for your little butterfly. Most of the items mentioned are for younger children, but I'm sure older kids can use them as well! 

 Lastly, the tools/toys/items mentioned below are my personal favorites, this doesn't mean that you or your little will enjoy them or that you have to go out and buy and use them how I do. My descriptions and opinions of each item listed are derived from my personal opinions and from my experiences. Thus, just because it worked for my child or some of my work kids, doesn't mean it will work for yours. Parents, remember you are the expert on your child and know what he/she will like. 

Any questions or concerns regarding any of the below "favorites" should be followed up with your child's teachers/therapist team for recommendations/second opinions as well (weighted blanket, chewy tubes for example). I am not an expert on these items mentioned nor am I claiming to be one either. 

 

In no particular order, here's the list of My Favorite Things:

1. Puzzles (Melissa and Doug): I'm a huge "puzzle person" and all of my families know me as being the puzzle queen. Not only are learning puzzles fun, they can increase overall cognition, communication, and fine motor skills. Melissa and Doug puzzles are my favorite!! 

2. Dot paint- funny thing is, I haven't used this with my families, but Autumn loves them!! They're good for providing  input as well as being creative. Plus it's fun and easy cleanup. Most are washable as well. 

3. Chewy tubes- For our little seekers who enjoy biting down onto straws and who may bite in general...this one is a MUST have, but as always, it should be used under direct supervision. Autumn has her chews readily accessible and they've helped with providing sensory input as well. 

4. Parachute- Remember how much fun the large parachutes were in gym class?? Now imagine a smaller one that can be used at home. Most kids LOVE this one, but for some, it can be a bit overwhelming and may take time to warm up to. A favorite activity is having the child lay inside the parachute and with two adults, we lift them, rock and sing to them nursery rhymes leaving off the ends of the words. Helps with vestibular input as well. 

5. Bubbles- Kids LOVE bubbles!! They are so much fun and help work on isolating the index/pointing finger to get them to pop as well as the mouth muscles to help them blow. My favorite kind are the ones from Gymboree (pictured below). 

6. Books! Specifically board books for the littles- flip and see ones (Karen Katz), Eric Carle and Pete the Cat series are some of my favorites. Again, as a therapist I am known for my puzzles and my books because a.- it requires them to sit and listen, b.-children love to look at the pictures and there's so much interaction involved. c.- both expressive and receptive language can evolve from reading...my list goes on. 

7. Sensory balls- so much fun to explore these. They can also be used as figits depending on the size of the ball. 

8. Small trampoline with handles/trampoline- talk about getting the energy out and providing vestibular input! Always one of my favorites. Autumn loves hers!

9. Hot Wheels and Trains- Not only are they so much fun to play with, they help with establishing those first syllables and sounds! Add a track to this, even better. I use cars often as reinforcers with my kiddos. They love them! Autumn loves them too!

10. Weighted blanket/vest/body sock- This is one thing that I haven't invested in just yet with Autumn, but plan on doing so soon in order to help calm her as she's my little seeker who loves deep pressure. She already wears the weighted vest at school and she's used the body sock plenty of times during OT. For parents interested in these items, please make sure you work closely with your OT in making the right decision for your child. There's so many different weights and variations. OT direction/recommendations highly suggested before purchasing!

11. Play dough- Imaginary Play, sensory input, fine motor skills, cognition...you name it, play dough can provide. This one item can be hit or miss. Autumn never liked play dough when she was younger, but now enjoys it. Also, always monitor play dough usage because some kids like to eat it while exploring, plus it can be messy. 

 

12. Play tent- This is one of my personal favorites. It helps with a child's body awareness and can be a very calming, safe play for a child to play/go into. I love reading to Autumn in her play tents.

13. Legos- What kid doesn't like Legos?! They are the perfect toy to keep kids preoccupied for hours, using their imagination, fine motor skills and cognition building works of art. However, Autumn tends to be a bit possessive of her Legos, thus, they become a "no touch zone". Also, some Lego pieces can be choking hazards. Monitor usage while playing. 

14. Play food, specifically food to cut- This is another personal favorite of mine. I use the play food often during imaginative play in order to build social skills while pretending to "cook" and "share" the food we "make" together. The cutting foods help with fine/gross motor skills and of course with communication and cognition. My favorite is the Melissa and Doug set pictured below.

15. Animal figurines (little people sets for the younger ones).- One of Autumn's favorite things is taking out her animals and play pretending with them (or lining them up). I often use animals during my sessions in order to support speech by making those animal sounds and singing songs (Old McDonald come to mind?). 

16. Child easel- It only took us 10 months to finally build Autumn's but she LOVES it! She uses the chalk side more in order to practice writing her name as it's easier for her to do so while standing up. Hence, fine motor skills are at work, along with cognition and imagination. If using the side to paint/color, make sure an adult is around to supervise. I'm sure the last thing anyone wants is paint on the walls. 

17. Tea set/picnic set- Similar to the imaginative foods to cut, this is one of my other favorites! Turn-taking, sharing, manners, socialization, imagination, communication, self-help/adaptive play...the list goes on. If tea sets come with small parts, please monitor usage. We finally have allowed Autumn to use the spoons that were included in one of her sets because they were a choking hazard for children under 3.

18. Tunnel- Similar to the play tent, the tunnel can also be a safe haven for children to explore. I use it with some of my kids while setting up an obstacle course that works on following directions, joint attention and focus, as well as providing sensory input. 

19. Kinetic sand- Sensory play at its finest and it doesn't make a huge mess everywhere (easy to clean). 

20. Flash cards- large picture flash cards preferrably. I use flash cards with my kids to assess their receptive (pointing to the card) as well as expressive language. Autumn loves her cards. Not only did they assist with her association with objects/people/things/actions, her expressive/receptive language and volcabulary started to expand. Plus, she started to learn how to read words by using them as well. 

21. Play house toys (vacuum, broom, kitchen set, etc.)- One of the key elements in helping to build a child's social/emotional as well as self-help/adaptive skills, is for them to be given some responsibility and independence at a young age. Whether that's providing choices and having them do simple chores, kids LOVE to help and feel included. Play household items such as toy vacuums and brooms and kitchen sets are great for allowing a child to model the adult/parent during chores and teaches them so many wonderful things about helping others. These activities also expand on imaginary play. Pictured below are just a few examples of wide-array of play house toys.

22. Blocks/stacking cups/shape sorters- As a Developmental Therapist, one of my key areas that I work on with my littles is cognition. These simple toys are the stepping stones to cognitive development and what will be a requirement for kindergarten: knowing their colors, how to count to 10, big to small/small to big, shapes, in/out and up/down prepositions, hide and seek activities, hand coordination, focus, etc., the list goes on...Here are some of my favorites pictured below.

23. Mr. Potato Head- Yes, this one toy gets his own number! Using a simple Mr. potato head works on so many different areas of development with young children: body part identification, fine motor skills, proprioceptive input (pushing and pulling the parts in/out of Mr. Potato Head), imaginary play, etc. It's also one of my favorite tools to use when working on body part identification with my kiddos and with Autumn when she was younger. 

24. Signing time- If there's one educational tool that I firmly believe increases overall communication, it's this! I may be a bit bias here, but I know Autumn's speech improved dramatically because of watching Signing Time frequently. It's fun, interactive, educational, and "Miss Rachel" (that's what she's known as in our household) singing and signing makes it easy for anyone to learn how to use sign language. Plus, Autumn not only can say these words, she signs and signs appropriately. She will most likely stick to learning sign language as she grows older. For those reluctant to buy, see if your local library has any of the first season of Signing Time there. Disc 2-12 are my favorites, specifically 2,3,4,5,6. Also, check out on YouTube as well. 

25. Water table (outside play for the warmer months)- This is for the warmer months and for outside play. Playing with water is always fun. Kids will learn how to "fill up" and "empty" the water from the cups. Plus, this is a simple activity that may help some kids afraid of being splashed become desensitized to water. As always, Adult supervision required during play.

26. Bean bag chair/bean bags- This is something I'm personally looking to add to our list for Autumn this year. She is a sensory seeker who is always looking for input. I imagine that being able to jump an sit in a bean bag chair will help soothe her a bit as well as having bean bags to play obstacle games at home that will provide her with input. 

27. Push and pull apart toys- Another sensory area that works on providing proprioceptive input with joints/muscles that also involves joint attention. I don't have these yet, but they've always been a toy that I want to buy for my work families. Another one on my list this year. 

28. Pretend sew and string beads kit- Here's one of my favorite tools that work on fine motor skills and cognition. It's not as simple as it seems and may take lots of time and patience for the littles to learn how to do the activities, but once they do, they love this. I'll be honest, these activities were probably one of Autumn's least favorites to try when she was younger because she would become easily agitated and upset whenever she didn't get the string in right, but once she got the hang of it, she learned to love it!

29. Baby Dolls- Along the lines of "household pretend play", baby dolls also tap into a child's area of social/emotional development. Plus, for other children who may have younger siblings in the future, playing with baby dolls can teach them how to be "gentle", among other things, to help prepare for a sibling arrival. The list goes on.

30. Triangle-shaped washable crayons/jumbo crayons for the little ones- These are my two all-time favorite coloring tools that help with that pencil grasp! They are fabulous and can be found pretty much anywhere. Make sure they are washable!!

So that's my list of my favorite things as not only a therapist, but as a mommy to a special-needs child. 

However, I will add some honorably mentions that I didn't include in my list:

Sidewalk chalk

iPad/tablet

Bounce Balls 

(These are probably already owned in many households and their benefits are known for all children, which is why I didn't want to focus on these too much). 

I hope that my list gives some ideas and suggestions for many this holiday season. Happy Shopping!

Xoxo,

Trish