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Nothing wrong with asking for help......

5/25/2020

Did we ever think we would be in a Pandemic? This has been the most challenging time for so many especially families that have a child or adult with a disability.

Think of how stressed we are that our daily routines have been completely changed from one day to the next, some of us have lost our jobs, if we have jobs, many are working from home. If you are an essential worker, childcare has to be planned for and the fear of bringing home this Virus is a real concern. Some have gotten sick or have had a family member effected by Covid 19. Our social outlets such as dinner with family or friends or just going to the gym has just stopped, everything is closed, travel plans have been cancelled, birthdays and graduations cannot be celebrated in traditional ways. Visiting with our parents or family members can be dangerous, and now our wardrobe has some additions such as a mask which also serves as a daily reminder of this pandemic fear. Think of how all this makes us feel? Our children have also had to make massive day to to day changes.... no school, no sports, no social gatherings..... just stuck at home.

Now think of a child with a Disability that is unable to truly comprehend what the heck just happened. Due to language deficits, they are not understanding why the bus is not arriving in the mornings, why they are now seeing their teachers, classmates and therapists on the computer, why they are home with their families and no one is visiting, why they are not going to therapy or their extra curricular activities. For many families, there was a focus on decreasing screen time and increasing inclusion and now we went back to increasing screen time (we have no choice) and stopping all social opportunities. We just abruptly stopped life! This is a very confusing time for them. Think of how we feel, now try to put that same perspective into the way they may see this.... does it make sense now why they have had such difficulty adjusting? We did, so why would it be different for them?

By now, a few months in we would think that they have settled and accepted the “new norm” but not all have. We have had to go back to some old tricks such as schedules, timers, things we had probably learned with the onset of the diagnosis is now be practiced again and hopefully it has helped. But for others that may not be the case, it’s like we are stuck in a bad dream. As things are now starting to open, parents are scared. They are just not ready to jump back in. This is now causing more stress and anxiety on parents and our children are feeling our fears. In my opinion it’s like round 2! Siblings are feeling the stressors as well so the entire family is struggling. It’s a constant tug of war right? Relationships are being tested and everyone is feeling uncertain about the future and what that may look like. Everyone has feelings and all individuals despite their ability levels can pick up on stress and anxiety.

We have to figure out how to best integrate again into this world. Some families now have fears that if all establishments require masks, their child will not be able to be a part of anything because their child will not wear masks and unfortunately that can impact the entire family. Some have fears that it’s too soon and they are too nervous to even consider taking their family out. Others are ready to drop the kids off at camp or school. I want to stress here that no one is right or wrong and NO ONE should judge. We cannot ever fully understand how all this can look in one’s home, there are too many factors to consider and we have to be respectful of that. Some children and adults have regressed tremendously and they need their routines to get back on the path they were on. Some parents have no choice and have to return to work. We have to be mindful of all this and be supportive to all. No parent should ever feel like they are making a bad decision, we are all doing the best we can. This is truly a balancing act and we need to do what we need to do for our families!

This time home I will say I have learned a lot about my children. Of course I know my children but to spend all this time with them, sitting together for dinner every night, listening to their conversations with their friends, watching TV with them, it’s honestly been really nice at times..... like a reset. As your children get older you loose sight of a lot of this. It’s normal, most 17 year olds don’t want to hang out much with their parents.

For my family, as challenging as it’s been for Chandler, our 20 year old son with ASD, it truly has put so much in perspective for us in planning for his future. Pre-Pandemic, we were so busy with life, the everyday hustle, running from appointment to appointment, multi-tasking to be able to get through the day, 2 minute conversations with family members, it’s like we were just living minute by minute. Our routines were so busy that we thought all was going great. Being home I am able to see more clearly Chandler’s strengths and weaknesses. We have had to set new long term goals of what we need to target for more independent living for our son, and help create our future plan along for him and us. Life has a way of throwing curve balls but plans are so important to ensure our children are going to be okay. It’s honestly been an eye opening experience, some positive and for sure some negatives but it is what it is! Our cards have been dealt and we need to now play the hand the best we can.

There are several moments in the day where I want to pull my hair out. All this is just so much to handle and unless you live it, you have NO idea what it’s like. I am running a business from home while caring for my adult son with Autism. My husband is an essential worker so many days I am solo as my 17 year old has to attend to his studies and rigor of his junior year. I have turned to my village for support, my family and friends. I have attended some Zoom support groups and actually hosted several and will say this has been very helpful. This is okay and “human” to feel overwhelmed. When I need a break, I have finally learned to take it. I will sit outside at times by myself and just zone out for 15min as an escape. I will put my sneakers on and run 4-5 miles to clear my brain. I will pour a glass of wine and watch a comedy or a silly reality show. Parents have to find their “place”, their escape and take it when needed.

Given the current story of a 9 year old child with Autism that passed away and his mother is being charged with his murder in Miami Florida, I have dug deep to think of how that family could have been helped to save this child. I have thought so much as this story has truly touched so many and has made me think of what our families need. Our families need support! Our families need a break! Our families truly need that village to help them cope with the day to day reality of raising a child with a disability. I love to see these support groups but parents are so exhausted and for many it’s hard to get on the computer while caring for their families at home. Parents need help, a mental break and there is NOTHING wrong with this.

Here are some suggestions, of course if you have safety concerns due to Covid 19, speak to your Doctors:

-Once you are comfortable with allowing people in your homes or dropping your children off to a family member or respite provider, I encourage to do so.

-Taking turns with family members is also helpful in getting some much needed breaks. My husband and I will take turns and I will ask my son (17 years old) to go swim with his brother or watch him so I can go take some “me time”. That can even mean sitting in my room and closing my eyes for 30min while listening to calming music. If you do not have others at home, time to ask the grandparents, aunts and uncles, nephews and nieces, etc..

-Asking your friends for help. I realize that not all may have a supportive family but this is when we need to ask our friends. We cannot feel bad or embarrassed to ask them. Our mental health has to be the top priority right now. Even if it’s only for an hour. Please ask!

-Asking other special needs parents. I have met some extraordinary parents in my journey and of course they understand our lives. Maybe setting up times to help one another, or even just to have coffee talk. We need to support one another

-Social Media. Take a break if you can. If it causes additional stress, choose another outlet. If others posts, opinions and advice can cause you to get upset or create unnecessary anxiety, just stay away from it. You need to recognize this and turn it off.

-Self care........ so important! I have tried new facial products, given myself manicures and pedicures, focus on you! Get dressed everyday, put on makeup if it makes you feel great! If I stay in PJ’s all day, I feel unproductive and lazy and I do not feel I handle the day the best I can. I feel the more put together I look, I can conquer the day more successfully. Not going to lie... I went and had my nails and hair done last week and it made me feel like a queen!

We really need to focus on us, our children will be fine and I realize it’s hard to see that but we will reflect back on these difficult days and ask ourselves, how did we get through that? We need to recognize when we need to ask for help and you need to take it. If you see community members offering to help, they want to hear from you. If the times that they offer support groups do not work for you, reach out to them and ask them to just talk to you. I personally will drop whatever I am doing to listen to you and I know everyone else will too. I am not a counselor but I am a good listener and will help you get through it as a friend.

I wish I can hug you all, we need those hugs but for now I leave you with this. I am so proud of each and everyone of you who are reading this. Some days are going to suck and others are going to be great! Have to keep that in mind. If you need a minute to regroup, take that minute while ensuring your child is safe. Phone a friend if needed and take up family, friends, and professionals offers to help. We are all in this together especially this community! We advocate and support one another and we are blessed to have that so take advantage of whatever you and your family need!

Stay healthy and know that I am a call, text, or email away!
Xoxoxo

Welcome 2019!

1/20/2019

So here we are, wow! Why does it seem that the years are flying by faster the older we get? Just wish it would slow down. For me, 2018 was an emotional rollercoaster. Moments of grief and depression along with amazing times and major milestones. As a parent, all I continue to hope for is health and happiness for my family.

Chandler is now an adult and I must admit, it’s a whole different ballgame. As I reflect back on his early years, it’s truly amazing to see how far society has come with understanding and acceptance but we still have a long way to go. I wish I would have known then what I know now. I wish I didn’t make every excuse under the sun to avoid my own anxieties. I am writing this blog to help encourage parents not to make the same mistakes I feel I made.

Let’s start with what I feel I did right!

Accepted the diagnosis and ran with it. It also set the path for my career. As I was managing therapy schedules and life, I decided to start to work as an Advocate as I wanted to help others. Perhaps I realized then that this was the therapy I needed. I tell parents all the time that you need to find “that thing” that is going to help you and balance your life. Could be a career, reading, exercise, a hobby, etc but we all need an outlet and an escape. Nothing wrong with this. DON’T FEEL GUILTY!

My relationship- we are a team and together we take it all on. Still do to this day and stronger then ever. Of course we had our times of differences as in every relationship but at the end of everyday we would work through it, remind each other we love each other, and move on. Don’t hold grudges and remember that life is hard, relationships require work along with compassion, compromises, and understanding. Don’t loose each other and be sure to make time for each other. You have to make each other feel wanted and needed. Humans need that feeling. This also sets a great example for your children.

My children- Raising 3 is never an easy task but I worked hard on making sure they each had their lives and that Autism did not completely consume them. Of course at the beginning when given the diagnosis, those first few years were REALLY difficult! We were exhausted, we had years of financial distress and it was really difficult to do “typical” family things as it was draining. We tried our best to make up for things that my kids lost out on. Perhaps that was not necessary but we did it no matter how exhausted we were.

What I wish I did differently? It’s simple. I wish I would have said YES to every vacation we could have afforded, every invite, every opportunity to take Chandler anywhere and everywhere. Why was I selective? Why did I worry? I am not sure besides the fact that I was trying to avoid a meltdown or his displeasure but those are life lessons. I feel now that I should have pushed him more and worked through it all. Every situation that I questioned I should have just dove into them. Don’t get me wrong, Chandler has had a great life and as a family we have done a lot together but it could have been more. I should have pushed him out of his comfort zone (or was it mine)?

My best advice to families dealing with a new diagnosis or reading this and saying wait.... is she talking about me? Yes I am! Share every possible life experience with your child and don’t use a diagnosis as an excuse. They are individuals and no different then others. Their diagnosis does not define them, it’s a part of them. I realize of course that there may be other limitations or concerns so of course prepare yourself for those possibilities. Whatever you do or wherever you go, your child can also have the most positive experience. It’s never too late to get started but not going to lie..... it’s hard and may require a lot of work but worth it at the end.

As much as I dislike social media, I LOVE when I see your children doing amazing things. It makes my day as I am sure it makes yours and your families. In this new year, let’s get out of our comfort zone and let’s encourage our children to be a part of everything possible. If you are a family member reading this or a friend, encourage and support. Be there for them and always offer words of encouragement while being understanding.

This year will be great, a new start! Let’s make the best of 2019 and enjoy all the positives while not dwelling on what could have been. As individuals we grow and learn every day as do our children. Let’s foster positive relationships with our teams so they give 100% to our children. So they support us when we embrace challenges for our children. Let’s set realistic goals so not only are they reached but we can add more. Let’s all get out of our comfort zone and most importantly..... make time for ourselves! Do what makes you happy and don’t feel guilty for the breaks you may need. We all need them.

Here is to a Healthy and Happy 2019🍾🥂!

It's going to be okay.... so they say.

8/15/2018

Here we are more then halfway though 2018 and what a half it’s been! I have been wanting to express so much but just seems that every time I start to write, a curve ball is thrown my way. Sound familiar? I know....preaching to the choir.

So let’s start out by saying that life has not been all that wonderful, just being honest! With great happiness also comes sorrow and the roller coaster continues for eternity. There have been highs and lows but honestly it’s just been exhausting. I use to be such a thrill seeker, wanting to sit in the front row for those insane rides but lately I’m choosing to sit out. Just wanting some emotional consistency, how can we as parents of differently-abled children make it work everyday while staying emotionally healthy?

Seizures suck, yup I said it and would have included other choice words but figured I need to keep this as PG as possible. As if Autism is not enough, now the boy has to suffer from seizures? Who do I have to thank for this? Who do I thank for the daily concern and worry if my son will have a seizure? If my son will sustain a life changing injury because of a seizure? That when my phone rings and I see home, the school or the caretakers name my heart sinks. I think the worst thing you can tell a parent who is going through this similar life is “all is going to be okay” “think positive” or better yet mention God. Unless you live this life, just listen if you want to be a good and supportive friend. Comparing your “temporary problem” to our life time of struggle is really insensitive. I can’t imagine it’s done purposely but have to admit that it hurts and actually makes it worse for us.

To the parents that are reading this and are feeling the same, its okay to take a break, it’s okay to be a little selfish, we need to worry about ourselves because no one else will and we have to be healthy for our children. Now of course this is complicated especially when you have other children and a significant other but need to find what will bring some peace to your life and your family. We have to also keep in mind what this does to the entire family, we need a balance of some sort. May be a day at the spa, a jog on the beach, a bottle... I mean glass of wine, or a night getaway but need to find it and follow through with it.

So my year... let’s talk about some of the good because we did have some happy times. My oldest got married to an amazing young lady that I am honored to call my Daughter in Law. The bad, Chandler had a massive seizure the day after the wedding. We knew it was coming so he missed the wedding. Bitter sweet right? Blessed to have some amazing pictures but everyday that I walk by the family wedding picture, I am reminded that Chandler was not there. Have I mentioned how much he has missed because of his Autism? I will leave that for another blog.

3 days later, my husband and I celebrated our 20 year anniversary. I absolutely love when people ask me how we celebrated. What did you get? Answer...... we celebrated in court trying to obtain Legal Guardianship for Chandler. Our present to each other was that the Judge granted Guardianship. Now I have come to terms that we will forever care for him, but every decision we will forever make has to include him and if it will work for him. It can be worse, I know but reality definitely sets in when they turn 18 and you realize just how much all the years of therapy and intervention have worked or not. Again..... SUCKS!!!!!!!!

I feel like Chandler turning 18 is similar to how I felt when the Neurologist told me my beautiful blue eyed baby boy had Autism. Oh and by the way, I was 4 months pregnant when I was told this. Good times right, just kept getting better and better. I will say that my youngest has been such a blessing and is amazing with his brothers. I actually feel that he was one of the best therapists for Chandler.

The biggest scare and the one event that took about 10 years of my life and gave me a ton of gray was in June. At camp, an amazing camp, Chandler had a Seizure in the pool. Thankfully he was saved by the lifeguard and quick thinking Camp Counselors. To hear that they had to perform CPR on your child is frightening. That call turned me into Danica Patrick and boy did I get there in record time. When I did, all I can do is cry because I realized that morning could have been the last morning I saw my son. I have yet to recover from this. My youngest was volunteering at camp that day and was with Chandler. Makes me sad to think what he has had to endure but I will say it has made him an incredible young man.

So what is the point in me sharing all this, a pity party? Not at all. It is to put in perspective what so many of us go through day after day. It’s to share my life to help better others and hopefully to teach a few lessons. I am blessed in so many ways, I know this but I would do anything for better health for Chandler. I’ve accepted that he will forever be dependent on adults, but now we need to make sure he is setup to have as much of a productive and safe life as possible. All we want for him is health and happiness. When he gets frustrated because he cannot speak, I can only imagine what is going on in his head. It breaks my heart! We have tried, we have done it all but his communication just didn’t develop the way it should. If you live a similar life, build a support team that understands your needs. It’s okay to weed out the ones that don’t. If you are a friend, support the individual going through this by just listening. Don’t compare or try to fix it, you can’t. (But of course we appreciate you for trying). Social media can be wonderful but can also be a depressing. Stay away if you need too. Take time for yourself and find what will keep you emotionally balanced. Don’t sweat the small stuff, smile as much as you can and cry when you need too. It’s okay. We are in this journey together!

Goodbye 2017, Hello 2018.

12/31/2017

Goodbye 2017, Hello 2018.......let’s make it a great year!

Wow it’s been a year! As another year comes to an end, I realize this is the perfect time to write a blog. It’s been a long time but life has me running in circles. With work and family schedules, there seems to not be enough hours in the day. I reflect back at this year and realize that I really need to enjoy the simple things in life. I have been blessed with amazing clients, work has been a huge success (I can’t even call it work), my husband has been home more after partially retiring, my youngest has had an absolute amazing 1st semester in high school and he has been having a great time with Lacrosse, Chandler has had a great year despite an increase in his seizures, and we are planning a wedding for our oldest in March! So much to be thankful for but also so much to stress over especially with Chandler. Chandler is not only on the Autism Spectrum but he is now medically diagnosed as Epileptic. As if the ASD is not enough, we worry daily if another seizure will occur. We have had to alter yet again our future plans to make sure one of us is always with him. But you know what? It’s okay...... we got this! We just have to be patient and roll with the punches. We have worked so hard to establish Team Chandler between home, school, and therapy. Our team is AMAZING and we all work together to keep him safe and happy. This is the ULTIMATE BLESSING!

So here are a few things, 18 actually that I want to share with you and that I (we) will be doing and continuing to advocate on. We have to remain healthy as our children, families and friends need us. We deal with so much on a day to day basis with raising our exceptional kiddos, we sometimes forget that we need to take care of us. Hope this helps and hope to be able to stick with it!! I won’t look at these as New Year Resolutions but rather look at it as lifestyle changes.

Family and Personal Lives:

We have to take time for ourselves. We have to enjoy whatever it is that keeps our stress levels down and keeps us feeling human. For me it’s running and spinning. I need to remain healthy.
Date nights! They say happy wife, happy life which is 100% true but so is keeping our spouses happy. We have to take time for our relationships and put forth the effort.
Friends...... we need them. They are support, they are the shoulders we cry on the ones we share so much with. Surround yourself with people that will support us and be understanding of our unique situations. It’s okay to weed out the ones that don’t get it. Life is to short!

Family......Geeze where do I start? Let’s keep this one simple. It’s okay to voice your concerns and be honest. Its okay to also take a break when needed. Your family is your family, can’t change them even if you question how you are possibly related to them but at the end of the day if you know they will always be there for you, then you are blessed. Not everyone has that.

Your children..... listen to them, stop working and play with them, love them, hug them, treat them when you can to their favorite foods or activities, just spend as much time as you can. Before you know it they become adults, time flies by us to quickly. Be silly with them and laugh with them.

Don’t sweat the small things. Don’t waste your time or heart on people or situations that are just going to create problems or negative feelings. This goes with social media too, if it’s stresses you then stay off of it! I will share that I take many breaks from social media and it makes me feel so liberated. I get tired of seeing so much BS and fake, fake, fake! I can only take so much.

Be grateful for your health, for what you have right in front of you. Don’t get caught up in what others have or what other get to do. Everyone is different and everyone has different circumstances. Live and enjoy every single day and be thankful that you have another day.

Can’t forget the siblings. It’s so hard, to me this has been the most challenging as I feel I have to be everywhere and have to always compensate. We do our best, that’s all we can do. We have to be honest with our children and families and simply do what we can. We do the best we can!

School, therapy and our exceptional children:

Create positive relationships with your schools. If it’s not working, work on fixing it but be realistic.

Learn how to be your child’s best advocate. Ask questions and be a part of the team, not just micromanage.

Don’t get caught up in the recommendations that private providers may make. First off remember that they are a business. Second, your child needs to be a child too. Have to find the balance that will work for you, your child, and your family!

Keep in mind that every parent has their personal experiences and expectations. We create relationships with people that have common interests. Take a look and make your own conclusions. You may miss out on an amazing opportunity for your child.

Understand your child’s IEP. Know what it all means and if your not sure, ask questions. Many school districts offer trainings as well as many organizations. Take advantage and learn what you can. It will make the process less stressful for you.

Share your child’s IEP with all that work with your child. You can also share your child’s private evaluations and goals with your school team. You want everyone working on similar goals.

Private providers can be a part of your meetings but they need to stick to the roles. It’s simply to share information and work together. I am finding that some private providers are becoming adversarial. There is no need. Of course any child will do better in a one to one setting. We need to work together to help your child generalize their amazing gains and skills.

If you have a problem, what should you do? Speak to your ESE Specialist. If it’s not resolved, go to administration. If it’s still not resolved, then go up the chain of command in the district. Start in house is my point. They are the ones that know your child and your family.

I know at times all this is extremely overwhelming. As I mentioned earlier, we do our best. There are many wonderful professionals that can help but make sure you hire or ask assistance of those that will help you and your family. Just keep in mind that you should be building a team, not playing in a super bowl.

Always keep the goals high and never give up. My son is almost 18 and he continues to learn every day. We all learn new things everyday so we have to keep that in mind. Decisions you may make or consider do not mean you are giving up on your child. As parents we want to be sure we are setting them up to be happy and functional adults. Don’t loose sight of that. We want that for all our children. Not all are college bound and I’m sure we know many that end up back at home as grown adults with a few failed careers. It’s not any different with our exceptional children.

I wish you an amazing and healthy 2018. I hope this year brings many successes and accomplishments for your children!
Looking forward to what the new year brings to all of us.

Wake up call........

1/22/2017

It's been awhile and not sure where to begin but perhaps what happened to me and my family last week is what I want to share most. Let me start off by saying that I am feeling great and I will get answers as I have a full life ahead of me.

As many of you know and can relate, raising children is stressful, raising a child with special needs is 10x's the stress. Why? Let's just say sleep deprivation, always worrying if they will have a good day, thinking about their social well-being, concerned about their future, making sure we are making financially sound decisions so they will be taken care of in the future, and I can go on and on. We add our everyday life of work and family and we are non-stop! But sometimes we need to take a step back and realize that we need to take care of ourselves. Without health and sanity, we cannot provide for our loved ones, especially those that need us most.

Last Wednesday, I woke up with some chest pains that was radiating to my back and down my arm. Although I felt fine, given my family history, I knew I needed to get checked out so I did. I was on my way to work and thought to myself, I'll go later but I started to think of my family and decided it should not wait. I drove myself to an ER that morning at 8:30 and explained my symptoms and family history. They immediately started running every test possible. As I sat there ALL DAY and actually feeling good, all the tests that they were conducting were coming back negative. I was feeling relieved and even made some work phone calls from the hospital bed. I wanted to leave but they were in the middle of a 3 step test that can take up to 24 hours. I called my husband and was acting like a big baby saying I need to leave, everything is fine- why do I need to stay, this place is going to cause me to have a heart attack!!!!!! After speaking to family members that are in the medical field, they advised me to stay so I did.

My husband, mother, and sister in law (who happens to be a nurse practitioner) all left because I was going home soon. Just needed one more blood draw to confirm that I did not have a heart attack, I felt confident it would come back negative and they would send me home. My youngest son, niece and nephew stayed with me and we were having a lovely conversation as they were just keeping me company. All the sudden, around 7pm and for no apparent reason, my heart-rate and blood pressure dropped drastically. The alarms all started sounding and my son, niece and nephew ran out to get help because I was passing out. Something came over my body, heat and sweat from head to toe and I become incoherent. Although I was unable to decipher what was going on, I heard codes being called and I heard "crash cart". I felt my Dad's spirit and saw my husband and kids flash in front of me. I said to myself, this is not my time!! Thankfully I was able to come too on my own. I was admitted into ICU for further testing and mostly close monitoring. Thursday night I was released with inconclusive results but on the positive, my heart and labs all look great!
This could very well be a one- time event (hoping so of course) but I don't know and either do any of the doctors. I am following up with my doctors for further testing and hopefully we can figure this out.

Was it stress? Was it anxiety? I honestly do not believe so but my friends (whom say I am stubborn, lol) may disagree. I have taken this weekend to reflect and to come up with a plan because after all this is what I do. I do think this is a wake up call from up above and somehow my Dad was a part of this. I am on overload and perhaps it's catching up to me. Us warrior moms really need to take it as easy as possible (much easier said then done) but at this point I may not have a choice so this is what 2017 will look like for me and perhaps you should all consider these changes as well!

Need everything written out for my husband and family members- God forbid anything happens to me, will my husband know what to do for my special needs child? As much as he is involved, I have always taken care of everything. It's really important that our significant others and close family members are aware of everything that needs to be in place for our children.
Taking more time for myself- doesn't mean spending money or elaborate vacations although that does sound wonderful and perhaps what the doctor may order, lol. I mean just putting the phone and computers away and watching silly reality shows or just going outside and playing more with my kids. Calling my mom or friends and saying let's go to lunch! Impromptu dates with my hubby sounds good too.
Slowing down- it's okay to get to things or to reply to emails the next day. It's okay to wait on cleaning the house or running errands. I need to work on my OCD and my need to please everyone 110% of the time. I need to realize that I am still doing a great job and I can wait a little to get to things. This is my hardest area to work on but made a promise to my creator that I would. At this point, I need too.
Drop everything and listen to my kids (and husband too)- I have actually been working on this as it was a promise I made to them this summer but making sure I don't stop is what I need to keep in mind
Learn to ask for help- what what?? I'm superwoman, I don't need anyone! Yes I do, we all do! Leaving my stubborn self and superhero powers behind me.

Life lesson learned. I got it and I hope you can relate to me and take my advice. I want to be around for my family, friends, and all my amazing clients that I get to work with everyday. Thank you for all the calls, thoughts and prayers. I'm a lucky one and I know that very well. I turned to my church yesterday and made a promise. I also prayed for all my friends and family that are sick or going through really difficult times. Life is not easy but we need to make the best of it while we have a chance at it. Looking forward to the new and less stressed me!
Xoxo

Planning for the future.

8/10/2016

As we get older, we are starting to "adjust" our future plans and dreams. As we were preparing to have a family, never did we expect to have a child with special needs. We had to make some major life changes and plans then but as they get older (and we get older) that seems to happen again. When raising a child with a disability, not only do you change but your future changes as well. When your children are young, many are not concerned with the future. Problem is, they become teenagers before you know it. As we continue to watch our children get older, we are quickly realizing that we need a plan in place for our entire family.

Why am I writing this? Perhaps it's because our son is 16 and it's time to make some retirement decisions. It's not just about my husband and I, it's about all our children especially our disabled child. As we see our friends retire and make some family decisions, every thought or idea we have has to be considered and well thought out to see how it will work for all. Sure this may be the same idea many families have, but most families do not have to provide for their child for the rest of their life.

We need to make sure that no siblings or family members are left with any of the financial burden. Sure they will all help and be there as a family unit but the financial piece is the one that is most concerning. The fact is that we can not just rely on what the government will provide. Everyone wants the "best" for their children so this is no different. We need to make sure that whatever decisions are made, that our children are also protected by having a Guardianship and Special Needs Trust in place. Wills should also be in place.

What about our children? We need to get them ready and trained to be able to live as independent as possible. We need to also make sure we give them good job skills so that they can be working members in society. No matter their ability, we need to reach into their strengths and create good work habits. If they are strong academically and cognitively able, then build on their interests but for many, this may not be the case. I see my son's generation coming through and it scares me to see that we are not focusing enough on their future and fostering independence. On a positive, I do see many more companies employing disabled individuals as well as being more aware of individual differences. I see small businesses being created for these individuals as well. This is certainly a start but we need more and we need to prepare our children for this so they can have a future in some type of employment.

What I want everyone to take from this is that it is NEVER to early to start planning. I understand things happen that may cause a shift in your families plans but we always have to be prepared because as parents, we never know when our last day on earth will be. We want to make sure our children are ready (or as ready as possible) to take on the world! As our son continues on the journey called life, we are focusing on his independent and employment skills. We are working closely with his therapists and school to ensure that we are all working on the same goals. As for us, retirement may look a little differently then we had planned for but this is part of our life. We take it day by day.....

These last few months………

2/22/2016

Well let’s just say it has not been easy. My brother having a heart attack that we totally did not expect was a crazy way to end 2015. Thankfully and God willing he is fine but of course it got me thinking. What if this happens to me? What if it happens to my husband? Do we have everything in order financially to support or kids, especially Chandler? We don’t typically think of these things until we have a close call or it’s too late. It is so IMPORTANT to have everything in place especially a Last Will & Testament and a Special Needs Trust. If anything happens to us, we need to make sure that our wishes for our special needs children are clearly documented. We just never know when our last day on this earth will be. We have to leave our plans and wishes in place for our kiddos. If you do not already have a Will or Trust in place, I highly recommend you speak to an Attorney to do so.

My January started out just fine until my son Chandler had his first Seizure. What did I just type? Yes, I typed Seizure. This was a day from HELL and by far the scariest moments of my life. 4 minutes felt like 4 hours and at one point I thought my son way dying. His breathing turned shallow and so slow that I thought he was just going to stop. The 911 operator was amazing although she thought I was a complete nut case. Chandler, who will be 16 soon (that will be another blog) had his first Grand Mal Seizure. I always hear of my clients and our friends going through this but I though we were in the clear. Well I was wrong!! Why? Why do we now have to worry about one more thing? One more medication! As if raising a child with special needs is not already enough! I have to add that he has a Seizure Disorder to his ASD. Poor kiddo, I watch him like a hawk. I am always checking on him and watching him closely as I am petrified of it happening again. I know I just need time but I don’t know how to get passed that day. I am thankful that it happened at home and that my husband was with me. I am also grateful that I broke his fall so it prevented a possible head injury but talk about a scary moment. Watching your children go through this is so difficult. I pray now not only for my son but also for all the families that have to worry about this on a daily basis with their loved ones.

I can finally write without tears, I can write without curse words, I can write in a calm state because I have come to the realization that I cannot control if it’s going to happen again. He is being treated by the best doctor and I have taken every precaution possible to ensure his safety should it happen again. Why am I sharing all this with you? Because from what I am learning, any and all children and adults with Neurological Disorders are at risk of Seizures. We should all be educated on what to do to keep our loved ones safe in case it happens because we never know. Thankfully my hero, my husband knew what to do. Thankfully he was home with me and just jumped in and took care of our boy while I was flipping out. This was a typical Sunday morning, we were just waking up.

Raising our kids is a difficult task, no doubt, but we all need to be as educated as possible and support one another. On a positive note, my son is doing beautifully. He is maturing and working hard everyday. I am much more at peace and doing what I do best which is advocating for all my kiddos (many of your children). I am beyond blessed with how this school year is going and how many families I have been able to help. We are currently all healthy and happy in our household. Busy as ever between therapy and sports but doing the best we can. Until the next time……………………..

Hoping for a great 2016.

12/30/2015

As 2015 comes to an end, I look at my kids with both happiness and sadness. Incredibly happy because of how proud I am of them. They have grown so much and continue to make the right choices. The fact that they are growing up so quickly makes me sad. Of course my #1 worry is Chandler. As he continues to get older, his Autism continues to impact him in so many ways. Sure he has made huge gains. He has handled a major transition into his new school and doing so well. He has managed the Holidays and all the festivities the best he ever has. He seems more "with us" then ever before. All this sounds amazing right? What we experienced getting to this point was anything but easy. We went through a pattern of NO sleep, moments of sadness, meltdowns due to frustration, and medicine changes. I always say it's a roller coaster raising a child with special needs. This year, I will say we rode the "SheiKra". If you have been to Busch Gardens in Tampa, you will understand what I'm talking about.

Sleep deprivation is no joke and can cause so many issues. Not just to your own health but it impacts decisions, relationships, and happiness. Poor kiddo was struggling while my husband and I would take turns on who would sleep all while managing our family and careers. When it was my turn to stay up, I would just stay up and think. I would think of how much longer I could do this. I would research medications and group homes that would take him. I honestly felt like I could not do this much longer. I know that if I get enough rest, I can handle it all but I was so afraid that I would not see that day again. I decided I needed to take it day by day and we needed to come up with a plan. We made some adjustments and we are in a better place today. I'm just hoping this lasts!!!!

I am constantly thinking about my son’s future and mine. My kids are at that age where it should be easier for us as a family but it's not. Why? Because of his Autism and his limitations. Autism is a part of the Heim Family and it will be forever. I am continuing to learn as he gets older but I must admit that it sucks sometimes. Raising children is beyond difficult and its forever! As parents, your worries never stop and your support is always needed. Our family will have to make sure that Chandler will be taken care of forever as he will never be able to take care of himself. This is real and this is what some families go through. All while making sure that no burdens are left on any one family member. It's not easy.

For 2016, I will continue to work towards his future. I will continue to help my clients and grow my advocacy work. I will continue to manage it all and handle any and all challenges that come my way. We are warrior parents and this is what we do! There is nothing in this world that a Special Needs Parent cannot handle. We need to find that support and surround ourselves with people that get it. Our family and friends should be there to support us, not to cause any unnecessary stress. The older Chandler gets, the wiser I get. The older I get, the more I realize what is really important in life. For the New Year, we should all reach out and support those that need it most.

Wishing you all a Happy and Healthy 2016!

What's up with Mike?

11/2/2015

Mike is an 8 year old boy that appears such as any other 8 year old boy until he gets an idea stuck in his head. He tends to obsess over things that you and I would never even think about. These things become constant thoughts in his head and are a huge deal to him. They interfere with his everyday life at home and school. They prevent him from developing friendships as children at times become afraid of Mike for they have witnessed episodes of extreme frustration and irritability. Mike has struggled with this for years and his parents have tried all they can to help their son. This can be one of the many challenges of Autism. Mike is an extremely bright and verbal child but just has such a difficult time dealing with everyday life. Why am I writing about Mike?

Mike represents so many children and this is extremely difficult for families to handle. Insurance doesn't want to pay for the help and schools are stretched so thin that it's near impossible to follow a plan consistently and with fidelity day in and day out. How about when we have better days but then that is followed with terrible days. How about if they start to demonstrate an entirely new behavior that we are not prepared for? All children and staff are affected so what is the right answer?

Many parents have struggles and although it appears as they can handle this, I must admit it's terribly difficult. Mike is like my own son in many ways and we have good and bad days. Balancing it all out is by far the most difficult challenge I have ever had. Being sleep deprived impacts so much including relationships. Our friends and families do not understand what we go through unless they live it too. Our communities do not get the challanges that we have. Also keep in mind, it's life-long! This does not go away, there is no cure!

I ask that you practice not only awareness but offer support to so many families that are raising children with a disability. Teach your children about caring and being compassionate to others. Patience and understanding is much appreciated by parents like us. We did not choose this, we did not plan for this. We are doing the best we can to give our children a fair chance in this world.

Making it all work....

10/12/2015

How do you do it all? This is a question I am asked daily. My answer is, "it's my therapy". I think everyone needs to find that one thing that serves as therapy. We all need therapy especially parents raising special needs children. We also all need a strong support system. If you don't have a lot of family, connect with a support group or meet other parents that "walk in your shoes". I started a monthly support group and out first gathering was just awesome! It was not only great for all that attended but for me, it was wonderful! To be able to connect and speak to parents that get it is priceless. I am helping them and they are helping me.

I am all about keeping it positive and real. I think that is what is most respected about me. Some do not agree and that's fine but for many, it's what makes it all work. I have been at this for several years now and I would rather work out issues then become combative. What good does that do? This is also the healthier route for us as parents. We have enough stress and if I went around adding more stress to my plate, I may not be around. We have to live with one another, work with one another, respect one another, and be there to support one another. This goes with work, friendships, family, and all that work with our kids. That's right, ALL that work with our kids!

You can of course agree to disagree but the approach is what is going to make it right or wrong for you. Of course there are times that you have to become a bit assertive (at times aggressive) in order to express your concerns or make people listen but even during those times, the approach is what most counts and defines you. That goes with everything in life. I am choosing a calm yet productive life where I will work hard to not only help my son, family, and all my clients but to also make a difference in this world. I am successful because of my approach, my relationships are strong because of my approach and my kids are happy because of my approach.

Enjoy the people around you, enjoy life, live life and pay it forward. Even if you are limited due to circumstances at home, there is always a way to make it positive. Don't get caught up in evil and negativity, that helps no one! Stay strong, keep your head up, and love your life even if it is not the way you planned your life to be.

You get one shot at this, life is to short. Let's all work on making this a more beautiful place not only for us but for our children. I challenge you all to do this and share with me what you are going to do or how you are going to make a difference. Nothing is to small, no gesture should go unnoticed. If you have already done something, share it. You will see how therapeutic this is for you. Sure it may seem like you don't have time to do but trust me, it always works out.

Can't wait to hear and see what evolves from this.
Make it a great week!

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