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.