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… Until next time -K-