Everyday I do my best as a mom to a perfectly imperfect beyond amazing little girl who stole my heart and soul the day she came into this world. And by perfectly imperfect, I mean she is human… we are all perfect in ways and imperfect in others, this is a reality we all face. She is the light of my life, she really has shown me grace in ways I never knew I could understand.
Advocating for her is hard sometimes. Not only do I have to be her voice, but I have to be the “voice” of her disabilities and abilities . Sometimes I have to talk about her in a way that for me is really hard. As a special needs parent you really try to uplift your child, you try to make them feel important and having an optimistic approach is generally the best option. If you think negative all the time because you can’t get over the fact that there are things that will always be different, good luck you wont make it in this mom life.
Have I ever told you how much I love to research things… It’s one of my many talents, or crazy ways as my husband would say. He thinks I’m a little nutty with all of my planning, details, knowing what is on the menu somewhere before we go there… I call it thinking ahead, being prepared. Obviously nothing ever came to mind prior to the end of my pregnancy with knowing what this life would be like, but I embrace it. I wake up each day and tackle whatever I need to. Right now that involves working full time, being a mom and also keeping my stuff together… if I lose it who will help her, who will help me?…
So in this world of my magical research, I have learned some very valuable things living in Oregon as a special needs mom. Yes, I’m still learning everyday but for now here are some things I want to share with you other moms out there…
#1) DO NOT BE IN DENIAL! Do not lose your sh#t early on and go into a panic of WHY WHY WHY? causing you to maybe stress eat or stay home everyday in your stupid pajamas and think what do I do now? My child will never make it? Why me? Will we make it? just STOP… understand that this is life and you need to embrace it and own it not only for you but for whoever you love and your child. Kids need their parents, don’t put yourself down it will only ruin the chances for them later on… you can make a difference by not being in denial.
#2) DO NOT TRY TO “Fix” YOUR CHILD! If you are a parent who believes that vaccines caused this, or that you can fix your kid or even cure your child… Or that you are being “punished” in some way and now have to deal with a medical journey with your child get over yourself, wake up!. This falls in line with what I just said in #1… Be aware of life, get in touch with reality… stop pointing fingers and blaming, be a loving, caring and realistic parent. You will need to be aware more than ever right now, you are a parent to a child who will teach you things you never knew existed, get on the right bandwagon please.
#3) TAKE CARE OF YOU! Without you being sane, having enough energy, being healthy.. being happy… without you your child will not have the best chance possible, you need to be strong now and be the mom you have always wanted.. maybe your mom is a rockstar, be like her… maybe she isn’t, so be the mom you always wanted. But take care of you, you matter too and your little one will need you to be there and be ok and alive.
#4) EARLY INTERVENTION- I can not say enough good things here. Yes get this started right away, once your child starts to miss those milestones ask for this if your childs PCP hasn’t already mentioned it to you. The services that you will receive are great, they are in home usually in the beginning and then travel into the Early Intervention preschool… Most of the people you will meet who work there by the way are special needs moms themselves, get to know them. They want to see your child succeed in life, they are the gateway to starting your little one out in the world of services, ask them questions they know more than you think. And there will be times when you think man is this worth it, YES IT IS.
#5) FIND A DOCTOR WHO IS GOOD WITH REFERRALS!! You are going to need a really good pediatrician. If you just moved, get on google and learn all you can. Ask around to people in your community, take a census do not settle. This is one of the most IMPORTANT things you can chose for your child as a parent no matter what. A good doctor is going to help and a bad doctor is going to “help”… you always want the best right, make it happen and build a good relationship. If there is anyway possible to find a place that has a cocoon nurse on staff you have hit the jackpot! A cocoon nurse specializes in helping families get what they need, they generally help special needs families.
#6) ASK FOR CARE COORDINATION WITH INSURANCE! If you have private insurance get a care coordinator assigned to you, you can ask for this.. I did. Make sure that you have a log on to the insurance website too so you can stay on top of all things. In general a patient care coordinator is this: Patient care coordinators are liaisons between patients and the healthcare system. As a patient care coordinator, you would ensure that patients receive the care they need and that they understand their medical condition, medications, and other instructions…. YOU ARE BASICALLY THIS FOR YOUR CHILD… but you will need this in the world of insurance as well, so ask. You will usually get a direct contact as well, this helps when you have lots of things going through insurance.
#7) USE AND ABUSE GOOGLE- Own that web browser, make it your new best friend. Seriously… I google all things and even people. Maybe I should google myself??? lol. You are going to find things everyday that you have questions on.. maybe a medical term, maybe a coupon for something for your child, maybe a medicine name, maybe the best place to take kids in this town to eat. Use google. Right now the best thing I have recently used google for is HCPC/CPT codes to help my doctors office get the proper codes to try to purchase a special backpack for my little sunshine. This is something I will dive into more on the next post and you are going to love it… but in order to receive wheelchairs, afos, sensory devices, language tools… a lot can go through the insurance system and be approved or denied but them need a code to process the referral.. most offices can figure this out but being a parent who knows this can help too.. Not every dump code works for general things that there are no specific codes for… so remember google your life needs, help your child.
#8) GET INVOLVED WITH OTHERS LIKE YOU- BOOM! Mic drop… yes people you are not alone. There are other parents out there just like you, wanting to feel like they can connect. We are all different and alike in many ways, we are human and we need to have others around for support. Find it and reach out if you can… once again use google or ask around in your community. Do not sit at home and pout each day because you have it hard and no one understands and your friends who have always been there are just not anymore… go make new friends who live the same life you do. I recently watched A-Typical on Netflix and the mom goes to a support group, OK i do not like the mom she was not my fav character but find something like that to support you and yours. I found some really great people here where I live…
#9) COUNTY SERVICES- DD SERVICES- Make sure that you have this. You have a child that needs every single bit of help and support and dd services has a lot of great things to offer. They also help pay for things that Insurance will not, like weighted blankets and sensory items. A great thing to have in your childs life.. just make sure that you know the system, be smart and advocate. Do not let your assigned agent from the county tell you what is available to you and yours.. find out and know. They have a job to do this I know but they are also human and miss things and we in our mom life world need to delegate and learn all that we can including the world of DD services.
#10) PLAN AHEAD FOR IFSP/IEP/ASSESSMENT DD SERVICES MEETINGS- Make sure you have all of your ducks in a row before you walk into any meeting geared towards your child. You are the best voice behind the needs of your child, do it right be prepared. I like to make a list for myself, I also type things up and sign them and have them attached to the IEP/IFSP/DD SERVICES ASSESSMENT.. this allows me to know that I did all that I can. I list every diagnosis (yes they should know but we have to be sure).. I list the medications and details, I list those who are allowed to pick up and contacts and info for them, I list Doctors… I list her likes, dislikes, food likes, food dislikes… what calms her, what sets her off… I get strong on listing how to keep her safe and I set goals for her.. I would like for her to wave, say hi, say bye… be able to understand basics… I set my expectations prior and planning this all out has really helped me and those involved but it helps my daughter the most. When it comes to the DD services assessment for the K-PLAN… well that is the same and different, you have to get a little rough with this one. You will have to advocate in a way that might seem hard for you, it was for me. You have to talk about you child and at their worst… meaning you have to tell someone your thoughts on what is hard on her worst days… you have to do this and you have to ask for help and understand that if you don’t and you talk like I usually do… like she can and she will do this…. you may be setting her benefits up for less in the long run only when it comes to this assessment. You have to get real and get real on the worst day of your childs medical issues.
#11) SHARE- Talk to others who you have met and share ideas on services, plans, accessibility to items… ANYTHING… sharing is caring. Having others who may know more on one thing than the other and being able to share ideas will really help. Make a list of places or organizations that you have dealt with or others have mentioned so you can access them again if needed. Find out all that you can and share it.
#12) DO NOT GIVE UP- If you ever do this you fail at life. For reals you are not going to make it. You can not give up on your tribe, you have to be great and good and full of life… you have to… you are mom.
#13) PLAN AHEAD FOR THE FUTURE- Okay here is where shit gets real. Yes I said that… you have to plan each day for your child, maybe it’s making the best food the night before the way they like it since they do not like certain textures and will only eat things differently and you want the person caring for them to do it right in feeding them…. but you also have to plan ahead for the future for when you can not be there… are your heart strings pulled now??? I cry about this a lot if it makes you feel a little better. I do, I freaking cry like a monster it gets ugly!
-ABLE ACCOUNT– I have one, yes I do. You can have this and it is wonderful! People can donate to it as well and it’s wonderful. YES there are FEES to this please read about it all before you just dive in… but understand it is still a good thing!
- What is an ABLE account? ABLE Accounts, which are tax-advantaged savings accounts for individuals with disabilities and their families
-SPECIAL NEEDS TRUST– NO I do not have this yet, yes I have the book and wish to set this up… The cost to do so is expensive due to a lawyer needing to do this. I have bought the book to do so myself I just need to find the time …Special needs trusts pay for comforts and luxuries — “special needs” — that could not be paid for by public assistance funds. This means that if money from the trust isused for food or shelter costs on a regular basis or distributed directly to the beneficiary, such payments will count as income to the beneficiary.
Make sure that you have a WILL in place if you do not have anything else… seriously you need this. I went to my local legal document center and paid $40 for a basic Living Will Kit… If you have kids you should have one, this will make it easier on your family too.
Write things down for the future of your childs life, you can set goals, you can also write plans for meals and just like you would for the IEP meeting… make sure you have a plan in place in case something happens…. you want others to know how to care for your child the way you would. Not the way they would but the way YOU would… being a mom is a hard job and being a special needs mom is harder but we got this… we live it everyday and if someone else had to step in they need to know what mama bear does right?
It is so hard to always be on top of things with your kids no matter what… life is crazy and some days I don’t even want to adult or be me but this is life and I deal with it…
I know life is tough but you are too, be strong and carry on and do your best.
One thing that I have done besides starting this blog is I bought a few blank journals and I started to write in them… letters to myself, letters to McKinley, to Savy, to Chad to my sister … man to all I love… just stuff that I think about and even stories like silly things about princesses and love and the big bad wolf. Things that if I’m gone tomorrow they will have… For some reason this had helped me stay a little more sane, and this is hard to do lol…
Here are some more tips on how to organize the life you are now living.
The method to my madness is simple, I never give up.
My husband thinks it’s torture to deal with me at times when I’m head strong about something. I call it being passionate, he calls it crazy. Well for my little one who can not talk she would say that her mom is a strong advocate. She would of course say Thank you Mommy… if she could.
For now she can not speak…for now we tackle the therapy appointments and currently her schedule for life is heavy. She is my hero. I think back on when I was little and was trying to find my own voice and wonder what that was like, this is her everyday.
Most of the time I don’t let the fact that she can’t speak hurt my own heart. But there are days that I feel for her as a parent. I can see her frustration rise when she can not tell others her wants and needs. When she is sick or unwell that is when it hits me hard, I want to help her after all I’m her mom. It’s hard to help when you don’t where to begin… every time she is sick the guessing game begins.
Her weekly schedule includes the following:
ABA 5-6 days a week for around 3 hours a session.
Early Intervention Preschool 2 days a week 75 mins each time
OT every week for 2 hrs one day a week.
SLP every week for 1 1/2 hrs one day a week.
On Mondays after school prior to ABA if the weather is good we have outdoor time. If the weather is not the best we have Music and Reading time.
As you can see her life is busy. But without this form of busy action she would not make any progress. As humans we all want some form of progression in life, for her I want that and more. I would love for her to conquer life moments and be able to stand against this world on her own some day. It will take time this I know and I will be patient and count my blessings each day but you can only sing ABC for so long until your voice gives out right?!.. It’s a tough job being a special needs mom, there are plenty of moments where you envision yourself giving up on the battle field with the white flag held high….. Don’t give up, instead give in to the life you have and make it work.
I will share with you some of my personal tricks on how to accomplish some simple things in the world of special needs parenting.
from ABC to ASD life this is how I live each day and you may too… be strong please it’s not easy and I know.. I get it.
The first piece of advice I can give any special needs parent or guardian is to relax. This is the hardest piece of advice and daily I remind myself to relax still. This wont be easy since everything around you is magnified while you walk on the eggshells of life, forgetting to breath constantly. But if you don’t relax and learn how to make it through the hardest days you will fail or make yourself sick… you need to be there in life for your child. It’s easier said than done… if you can accomplish this I promise it will get easier.
The second thing I could tell any parent would be to seek social support. You may be a lot like me and at first want to hide and stay inside. You make plans with your friends who have kids that have no medical needs but then you cancel plans in fear of judgment or worse losing friends. Please find people like you, like your own child. Make friends with those who understand the differences in life and find the beauty of inclusion. There are plenty of support groups, I will actually post about this soon so stay tuned. Google is the best tool for this, don’t call 211 it doesn’t always work. Don’t be the mom who is too afraid of others opinions to take your child to the park or a play date, own that moment and make memories. And remember who gives a stink about someone else’s opinion, you are your own judge. Don’t push away your friends though… if they set you aside that is on them, don’t push them away in fear of “what will they think” just be and see how it goes… remember once you find that group who gets it truly, you’re going to find so much peace in solidarity ❤️
The third offering on words of wisdom would be to make a binder/file folder on your child. Yes go to the school isle pick up a binder or two or three and put together the life of your child. The way I have mine is like this:
In the File Folder I keep all of her medical records. I section them off by type of appointment note. My child has complex needs so I have a section for heart records. A section for Neurology notes. Therapy team notes including SLP, ABA and OT. School notes for her ISP. Autism notes from her doctors. Primary care notes.. I also have her genetic testing section. She really has a lot. I have bought each file folder on amazon.
I keep them in a secure and easy to get to location, meaning if there is a fire I can grab that fast but my child can’t get it and take everything out.
I have 2 binders at home for my child. One is a large zip up binder that I can carry and toss around more or less where things wont just fall out. This binder has all of my advocating resources in it. I keep copies of flyers from local organizations that offer inclusion and other items in there that I feel are helpful. I also keep a section in the front on my little one and all of her ICD diagnosis codes along with CPT codes that we have had to use over time. I keep copies of letters from doctors to obtain goods from DD services and all important documents of that nature. This binder goes with me to meetings that I may attend with other parents or professionals like me to gain knowledge. It is my own guidebook and if I can use it to help others I do my best.
The second binder I have always at home. This is a simple 3 ring binder that I have easy for anyone to access. In it is a list of all of her Doctors and their info along with why she sees them. There is a section on her likes and dislikes. There is a section on how her daily routine should look in case someone else needs to check and make sure they are taking care of her properly. There is a risk protocol section on what to do if… she has bloody noses and sometimes refuses liquids all the how to’s are in there. There is even a print off not only on my fridge but in the binder on how to save a child from choking just in case. I also keep a section on her insurance and all of her other info in case she needs to go to the doctor. I keep a list of her diagnosis codes in here as well and a list of foods and how to prepare them for her.
I know it seems like a lot of work but if you don’t prepare yourself or others for when you are not there you are only going to fail your child in those moments. Life throws lots of curve balls so be prepared that was you can resort back to #1-Relaxing.
Which leads me to my last bit of advice, always have a way to release your inner pain. You may be strong but you are human and you do have feelings. There will be days where you feel overwhelmed and scared. You might be angry and sad, or just mentally drained and unable to understand it all. You can easily get your mind stuck in a state of “Why me?” or “This isn’t fair”. I get it, I was there once too and I have days where I think like that still but I find ways to come back to now and remember the importance in life. I have a few ways that I myself find time to get shit out so to speak.
#1- I work out and this benefits me and my brain and of course my child, who knows maybe I will live longer. I enjoy this a lot, but yes it is hard to find time. I can not take my child to a gym and put her in the daycare people. I can run with her in her stroller (while she still fits) on good weather days. Most days we take turns my husband and I watching her and working out or I put her in her stroller and give her the tablet and strap her into it while in the garage and we are both in there together while I hit the treadmill.
#2- I get crafty. Yes I like to do this, if you don’t please don’t try it you will actually get more frustrated. I paint rocks and I hide them around town or put them in my yard. I also just try my best to do things off Pinterest and those things include crafty in ways of home decor and food. You can get crafty with food folks that is fun too. This for me is fun and relaxing and generally I involve my friend Vino and we have a blast. Also real friends and family can help with this too.
#3- I go outside. I get out of my freaking house and get some fresh air. I go hiking or I go outside in the yard and let my little one play while I just breathe or I read. By reading I mean I listen to audio books since my hands are busy most days. Being inside a lot can do significant damage to your psyche no joke, get fresh air.
#4- I watch a movie and relax. Yes you can be lazy at times and this is your time. Own that moment and binge watch netflix while your little is sleeping or if they are busy with something take control of the TV. If you brain has a hard time being quiet then listen to something that you can get lost in.
Basically life is crazy for anyone and it’s up to you to make it your own kind of crazy. You need to own the chaos that you are living and find out what works for you.
Advocate Like A Mother