Ten Tips for Becoming an Advocate for Your Child With Special Needs

When you are the parent of a child with special needs, there are many things to learn about- the diagnosis, medical equipment (if needed) or adaptive equipment, diets, etc. One of the best things you can learn is how to become an advocate for your child. I can’t stress the importance of this enough.

It can be super scary to speak up sometimes, but your child needs you to say what they sometimes can not- there are many factors that can keep a child from speaking up from their needs- speech and/or language delays, slow processing speed, anxiety, and so on. Being an advocate for your child can make you a stronger parent.

Parent and child

Julian’s Path to Awesomeness

Julian had a 504 plan almost immediately after starting kindergarten. His diagnosis came a couple of months later- severe ADHD, combined and autism.

It was a LOT. There is a post dedicated to finding out about the diagnosis, Looking at the Bright Side

The 504 plan worked- it took until 4th grade to get him an IEP. Why? Somehow, Julian’s issues didn’t really affect his work, but it did socially.

The IEP finally got put into place when he started 5th grade. His 4th-grade teacher (who has since become a friend and neighbor) submitted a ton of data to help the process.

Julian is in 8th grade and working on the transition to high school. According to Kentucky guidelines, he can attend meetings when he’s 14, which will be in July, or in 8th grade. My heart broke a little during the transition part of the meeting.

He makes good grades but still struggles with anxiety- you couldn’t pay him to present in front of a class. At the meeting earlier this year, I asked for accommodations for this. I don’t want that to affect his grades.

Meeting

Ten Tips for Helping

My number one tip for advocating?

I can’t say this enough but know your kid. Knowing what Julian does and doesn’t need has helped so much.

The other tips are:

2. Keep and organize paperwork. I have a binder full of Julian’s paperwork- report cards, the 504 plans, IEPs, everything he’s ever gotten from school. It helps when asking for a new plan if you’re forgetful (like me) or just so you can stay up to date.

3. Create relationships with teachers and staff.

My kids went to a great elementary school. The counselors were super helpful, and almost all of his teachers were great with him. My personal favorite was the teacher mentioned earlier. We love Allison. She’s a wonderful teacher and as an added bonus, she was a special education teacher for some time.

4. Ask ALL the questions.

If you don’t know what something means, ask. That’s what the staff is there for. When you’re starting out, there’s plenty of questions to ask, even the ones you think maybe stupid.

5. Know your child’s rights.

Each state has a different way of doing things in this area. Research the IDEA. The reading can get a bit hard but it’s well worth it.

6. Talk to your child. This is the best way to know if the IEP accommodations are actually being used- for example, Julian gets extra time on testing and this is super important during state testing. Teachers have to go by a student’s IEP/504 Plan.

Your child can learn to self-advocate as they advance through school.

7. Communicate with teachers. Try to stay as pleasant as possible. If things don’t go well, speak to an assistant principal. Remember that the main goal is to get the best plan possible for your child.

8. Remember that you are not alone. Millions of other parents are going down the same road.

9. Research, research, and research.

There’s new information coming out all the time about learning disabilities, assorted medical issues and so on. Knowing the newest information can help you feel more confident when advocating for your child.

10. Plan for the future. I try to plan for one school year at a time, but once Julian hit middle school, it hit me that he will be in high school then an adult soon.

Yikes.

I started looking at high school programs last year and we picked a program to apply for. The next meeting to finish his transition plan is later this year.

Getting kids through school is a challenge in itself. Why make it harder?

Information courtesy of

Very Well Family

Five Ways to Avoid Holiday Meltdowns

Meltdowns are not a fun event, no matter what day of the year it is. Most of the time, they can be avoided, but sometimes, it’s entirely out of our control. To learn more about meltdowns, you can read The Truth About Shutdowns and Meltdowns

Give thanks

Bringing Down The Stress

The holiday season can be a stressful time- starting with Halloween and ending at New Year’s Eve. This can depend on which holidays your family celebrates- some families don’t celebrate anything at all, some celebrate everything.

Isn’t that neat? My family celebrates Thanksgiving, Christmas, and Chanukah. My mother is Jewish, so we go to her house every year to have some fun over the eight nights. It’s fun but can get a bit tiring, so we go at our own speed.

Things can be a bit more stressful if you run into family members that don’t understand your child’s special needs- especially if they don’t want to. There is a difference between not knowing and not wanting to know. This topic is a bit more detailed in Helping Your Family Understand Your Child’s Special Needs

Overall, there are ways to help your family get through the holiday season in a way that everyone can remember fondly.

Upset child

Five Golden Rings…I Mean, Tips

  1. Avoid places with crowds, loud noises, etc. Many kids with special needs do not like the line to see Santa. It’s loud, bright, and if you’re Julian, there are germs everywhere. Some kids do not do well in crowds, because it’s too cramped, things move too fast, and sensory issues can be caused by very small things that we are not aware of. Some places are becoming more aware of this and are offering sensory-friendly gatherings, so look around in your area.
  2. Be flexible. This is most likely the most important tip. Flexibility is a requirement in parenting, but in this case, there’s more of a need. Things can change in a second with our special needs kids, and this is okay. Things can become just too much for them, and they need the ability to find a quiet spot to calm down in or leave entirely. Bring two adults to events so that one can stay with the other children, bring adaptive equipment, etc.
  3. Watch out for wandering. This can occur when a child needs to escape quickly from a situation they do not want to be in- a loud party, for example. Keep an extra-close eye on your child near doors and other routes away from your location.
  4. Keep up your routine. Most kids are on a break for a week before and after Christmas. It’s important to keep up a daily routine- eating and sleeping as close to usual times as you can. Kids do better when they know what is going on. It keeps their anxiety low and they are less likely to get off-track with behaviors.
  5. Take a break if you need it. If things get to be too much for you and/or your child, it may be time for a break. Don’t go to the next party. Don’t worry about the next celebration. Stay home, watch a movie and snuggle up with your family. This can be more fun than going out and potentially creating more stress.

Christmas gifts

The holiday season is upon us, the weather is getting colder. Let’s make great memories with our families.

What tips do you have to prevent meltdowns with your kids?

Photos courtesy of Unsplash

Information from CBS

Twin Mummy and Daddy

A Guide to the Holidays: Staying Emotionally Healthy

The holidays can be a difficult time for many people. Many deal with stress and/or depression, grief, or other issues like toxic family members. Some even go through the holidays alone. This can be especially hard. It’s important to know how to stay emotionally healthy during this time so that you can enjoy the holidays and possibly be able to help someone you know.

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If You Are Alone

This situation is caused by different factors- distance, family issues, financial issues, and so on. There are ways that you can make this a positive time of the year:

  • Reach out. Many people will offer to extend an invitation to someone they know may be alone for the holidays. Let them know if you are available, offer to bring something. If you have friends who wouldn’t mind an extra person, ask if you can join them for a celebration.
  • Create alternative traditions. “Friendsgiving” potlucks have become popular in the last few years among those who aren’t able to see their families. I’ve gone to a couple, and it’s a lot of fun. Everyone brings a dish, decide on a fun activity, and let the fun begin.
  • Pamper yourself. Do something you enjoy- a day at the spa, nails, a new book, shirt, etc.
  • Help others. This can take many different directions- volunteering at a homeless shelter, animal shelter, etc. This can help remind you of how fortunate you are and it’s a good experience.
  • Travel. If you can afford it, go out of town for a couple of days. If you can’t, try a “staycation” and go places in your city that you haven’t been to.
  • Self- care. Check in with yourself daily- feelings, hygiene, etc. You don’t have to be cheerful 24/7 during this season, alone or not. If you realize you are having a hard time, reach out. Please see my Resources page for more information.

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For Those That Are Grieving

Grief is a hard process any day of the year. The holidays can be harder on someone that is grieving than most people realize. If you are grieving or will be celebrating the holidays with someone that is, these tips may be helpful.

  • Take care of yourself. Grief can affect people differently. Depression can cause a person to not care for themselves as they did before the loss. Self-care is important, even the tiniest steps like brushing your teeth, taking a shower, etc.
  • Don’t rush the process. It may take years for a family to feel like holiday gatherings are “normal” again after a loss. Do not rush through your grieving process for others. Everyone grieves differently and this should be respected.
  • Plan ahead. Do you really want to host Thanksgiving this year? Can someone else do it? Think about where you are in the grieving process and how comfortable you feel hosting holiday events. It might not be for you this year, but in a year or so, it might be okay again.
  • Share stories. This might be hard, depending on the situation, but it can also be helpful. Sharing stories can be good, however, when they focus on the good times with the person, acknowledging that they are missed.

If you are going to a gathering with a family who has had a recent loss:

  • Offer help. Maybe the family needs help with shopping, cleaning, decorating, etc. This can be a huge relief to them. It’s one less worry in an already tough time.
  • Ask how everyone is doing before attending the gathering. It may be a somber or joyous gathering, but you will not know unless you ask beforehand.
  • Respect the right for everyone to grieve. This is very important.

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Holiday Cheer or Holiday Stress?

There’s a lot of pressure to spend lots of money on presents, spend time with family that we may or may not get along with, get our kids everything they want and so on. How do we remain, or even get, cheerful about the holidays? How do we deal with the stress?

  • Tune out the noise. The holiday specials, songs, and movies can be a bit too much. If it becomes too much, turn it off. I can’t stand the radio stations that play nothing but Christmas music- starting before Thanksgiving.

Can we get through Thanksgiving first? It’s a bit much for me to hear this music for over a month, so I don’t even turn it on. I am stuck with it when Matthew and I are in the car together because he loves it- there’s a thing called compromise.

  • Set limits for presents. This can be a number of presents, price, or even both. We have four birthdays within 2 weeks after Christmas, so we really try to watch how much we spend. (Those birthdays are mine, Matthew, my father in law, and Cameron.) Plus, there’s the battle of making sure each kid has the same number of presents. Kids need to know that money doesn’t come easily and that they may not be able to always get what they want.
  • Toxic people need to be shown the door. Not everyone in your life is meant to be there, and that includes family. Your time is valuable- why spend it with people who don’t value you? Be realistic about what you can handle.
  • Be grateful. The main message behind the holidays is counting our blessings and being grateful for what we have. It may be a good idea to make a list of the things you are grateful for, no matter how small they are. This can be a bit of a lift, especially on the harder days.
  • Have fun in moderation. You will feel a lot better if you don’t overeat, drink too much or overdo other activities. Everyone has their limits- don’t go past them or you may disappoint yourself.
  • Take care of yourself. This can be a very hectic time of the year, and self- care can slide to the bottom of your to-do list.

Example: If you’re a perfectionist, it’s okay to let things go a bit. You can find the perfect gift for everyone, but if you’re so stressed out finding it, you’ve lost the fun part. It becomes a drag. Try loosening up a bit- don’t spend hours online looking. If you need to, take a break after an hour and come back to it the next day. Start shopping earlier to relieve some of the stress.

  • Say no. This is okay. It’s possible to become overburdened with parties, work, and other activities. Saying no lessens that burden. It’s important to remember your needs.
  • Nourish yourself- physically and emotionally. Don’t entirely skip the good foods, because there are plenty out there. Try a smaller portion. Treat yourself. Try taking a bit of “quiet time” each day to read, write, draw, anything that helps you rest your mind a bit. You will feel much less smothered by the demands of the season.

Do you have any tips for a stress-free holiday season?

All pics are from Unsplash

Information from Psychology Today

We Have to Stick Together

Parenting

I’ve read a lot about parenting.

I’ve been a mom for fourteen years- Cameron was born in January 2005. (Yikes.)

There’s a lot of moms out there that try their hardest to demonstrate that parenting is easy.

I don’t know what planet they live on, but this is not easy.

Unless you are lucky enough to have nannies or other in-home help, you’re not sleeping much for a while after you have a baby. They aren’t the greatest sleepers. Some babies gracefully sleep all night at an early age and at that point, you may want to build a shrine to the parenting gods.

I almost did when Lily slept through the night before I went to work after her birth. Her brothers wouldn’t have thought about this.

The toddler and preschool years?

You love your kid, but are also ready to list them for sale on Etsy about three minutes after they terrify the cat.

This is the time where they learn so much and repeat things they probably shouldn’t. Break out the phones for those moments.

When kindergarten hits, be ready for tears.

Elementary school is full of fun and adventure… Just wait for the middle school. I’m currently there and, wow, is it full of things I never saw.

Pets, Stinky Feet and Sancti-Mommies

We’ve had a few pets along the way. Tiger was with us for a few months and sadly, we had to say goodbye after a tumor ruptured on his leg.

It was bad enough to make that decision, but it was worse to have to tell the kids. I couldn’t fix Tiger’s leg and keep him with us.

Tails and Miss Purr, along with the turtles, Biggie Smalls and Lightning, complete our house. We love them- they are family members.

Tails

Stinky feet are everywhere at my house. These kids are gross. They shower all the time.

The preteen and teenage stage…

Double yikes.

There’s so many things to explain- drugs, alcohol, mean girls and boys, sex, and the list goes on. As Ferris Bueller once said, “Life moves pretty fast.

He wasn’t kidding.

Then, there’s the moms that think their way is the best and that they are better than everyone else.

Whew….

They have tons to learn.

First of all, should they have a child with any kind of special needs, they are entirely screwed. Your mindset changes and throwing shade at other moms isn’t going to give you the support you are going to need.

Once these moms become known for their less-than-polite ways, who really wants to be within a mile of that?

I don’t.

As Ariana Grande says, thank you, next.

I’m all for research and opinions, but there are ways to express these respectfully. It’s possible to be nice and say what you think.

Parenting is the roughest job that many of us will ever have, unless you’re a first responder, logger, or something equally tough.

We need to stick together and remember all of us are doing the best we can. This goes for moms of newborns, elementary school-aged kids, even adults. It’s tough out there.

If you know a mom (or dad) who is struggling, try to help them out. It might be the best thing anyone does for them in a while.

Until next week, hang in there and try to laugh off your kid’s latest adventure.

Pics courtesy of pixels and pinterest

Teens and Sleep: How Much Do They Need?

As adults, many of us love to sleep. I’m one of those adults. I need my sleep. I must get as much sleep as possible so that I don’t run into issues with migraines, an RA flare or both. One of my migraine triggers is lack of sleep- if I don’t sleep well for 2-3 days, I’ll likely have a migraine the next day.

I’ll pass.

Sleep is also important if I’m in a flare. It’s usually all I want to do and even if I am awake, it’s not like I feel as if I have fully awakened. While we are asleep, certain brain activity and bodily functions occur.

Teens are in a constant state of growth. They eat and sleep a lot. I refer to Cameron as a sloth quite often- he spent most of summer break sleeping and likes to take a nap every day after school.

Sloth

How Much Sleep Do They Need?

Teens aren’t babies anymore, so they need a bit less than 16 or so hours, but yet need more than the 7-9 hours that adults require. They don’t like early bedtimes, so that’s always a debate. According to The Sleep Foundation, sleep patterns change during these years. It’s entirely possible for teens to not naturally be ready to go to sleep until 11 PM, sometimes later, depending on the teen.

Most teens need somewhere between 8-10 hours of sleep a night but aren’t getting it. Some are only getting about 8.5 hours of sleep a night. That’s 1.5 hours of lost sleep. Many teens sleep in on weekends, which can affect their internal clocks during the week. Others may suffer from unknown sleep disorders like restless leg syndrome, sleep apnea, insomnia, and even narcolepsy.

A note for parents of teens with special needs: It can be difficult for your child to sleep even 8 hours a night, as autism, ADHD and other diagnoses can cause sleep issues. It may help to discuss any sleeping issues with your child’s pediatrician and/or other specialists to find what may be helpful. What works for one teen may not work for another.

Medication may be needed to help your child sleep and this is an option that many parents use, myself included. Please follow all directions of the medications and the prescribing doctor.

Sleeping

What Happens if Your Teen Doesn’t Get Enough Sleep?

Much like younger children, teens can be a bit crabby if they don’t get enough sleep. They can have issues with concentrating in class, at work, or other activities. This can get really dangerous if they can drive. Driving while tired can lead to crashes and/or other behaviors.

Some teens can become more aggressive, and in teens with behavioral/emotional issues, this can be one of the first things looked at when behaviors become more intense. Has the teen been sleeping well? Less aggressive behaviors include impatience with and yelling at others. I’ve seen kids that didn’t sleep well act out because they didn’t have the energy to better regulate their issues.

Skin and eating issues are common in teens that don’t get enough sleep. Breakouts are more frequent and much like adults, teens may be more likely to eat more sweet and fried foods and drink more caffeinated drinks.

Solutions for Sleep

Sleep is important- if your teen needs a new routine to make sure they get enough sleep, you may be able to start with these tips.

  • Naps. Naps can be beneficial, but naps that are too close to bedtime or too long can create a negative effect. 15-30 minutes can be helpful.
  • Create a sleepy environment. Some people love eyeshades or dark curtains. Cool temperatures can help your teen sleep better.
  • Work towards a consistent bedtime. A consistent sleep schedule will help your teen feel less tired because their body will get in sync with natural patterns. On the weekends, try to stick to the times as close as possible.
  • Turn off electronics at least an hour before bedtime. Most teens will not like this idea, but it will help their brains shut down.

Teens are going through a lot as it is- acne, dating, parents, school and so much more. Sleep is one thing we can definitely help them with.

Another note for special needs parents: Your teen may need a specific routine to help soothe them into sleep- calming music, lights, sensory items, etc. Knowing what your child needs is important in this aspect. Please consult your child’s pediatrician if you need more guidance.

Pictures courtesy of Unsplash