I want to focus on the good and not the bad...but sometimes it is just impossible.
I really wish that if people did not understand me or my boys that they would either take the time to research epilepsy in children or fetal alcohol syndrome, or pick up the phone and ask questions...but to simply jump to your own conclusions truly can have intense effects.
I realized this weekend that the parenting part is not the hard part of my life, it is the "other stuff" that comes with parenting. For example, I have no problem being with the kids all day, but being with the kids all day and THEN having to do the toy clean up is hard. The other thing that is hard is not having that person who you can check reality with. You know if you have a partner in life, that if something upsets you, you can chat with them about it and either they make you feel better, tell you to get over it, or take action with you.
As a single mom with so much daily shit, there is no one at night who's job it is to share the stress or the worry. there is no one who I can say, "your turn" I am not calling doctors tomorrow, you do it. Or, hey hun we have a CSE meeting and it is going to be intense, when you see me getting upset,will you please jump in and form rational thoughts so that they will listen to you.....
So here is my list of things I wish everyone knew....
1. My boys are MY BOYS. They found my family for a purpose and I would never, ever for a minute wish anything differently. Even when life has been the hardest, my boys are mine and I am thankful. And even if it is not what you hear, I am truly, truly blessed...but people don't walk around saying how blessed they are...wouldnt it be cool if that was the NORM? Rather, you are likely to hear when something is hard or stressful....but in all honesty, I cherish my life, I cherish the little moments, and I laugh often, that is a good life!
2. Brain damage is an intense thing to live with. Life doesnt make sense for children with brain damage, and they can look like they understand, and completely and totally DO NOT understand. And they can look out of control, and truly be doing well, or vice versa they can look like they are fabulous and only be 10 seconds away from a true nightmare.
3. Doctors do not know much about brain issues. Every person with a brain disorder is a unique individual, and the parts of their brain affected are different. Brain issues for my boys change daily, minute by minute. So, if you think you have a new strategy, I likely have already tried it. If you think I am doing something wrong, talk to me about it, you might be surprised at my answer. On the other hand, I AM OPEN TO SUGGESTION and reminders! But be kind, be gentle and approach me privately, away from my boys.
4. It is not possible for 1 person to police any child with special needs all the time. It is REALLY NOT POSSIBLE for any 1 person to police 2 children with special needs and a toddler at one time. But I am doing my best. If you have a suggestion for how to better do something, please let me know. But if I suggest that the an unsafe item go away, it is probably because there is a really good reason. I have to have a safe environment surrounding my child becuase it is like having 3 18 month olds at times, I am responsible for creating a safe world because the boys are not always able to make their own world as safe as other children their own age. Their interest and desires outweight their ability to follow rules.
5. Just because you can't see their disability doesn't mean it doesnt exist. For M and D their disabilties are hidden but impact all of their lives in every aspect. If they looked more disabled, it would be easier. If they looked more disabled we would all have a constant reminder of their needs. Instead, I am the constant reminder, I live life constantly reminded of their limitations. Please don't fight with me over my rules, they are an important part of our life!
6. I need as many people in my corner as I can get. I treasure the times that friends have taken one of my boys for some alone time...what a treat for M, D or J to have 1:1 time with an adult. I treasure the people in our world who love us for who we are! If you get to know us, we are bound to impact your world....definitely we make an impact, my hope is that it is a positive impact!
Thanks for listening!
- I am a single mom of three amazing boys! All three of my sons entered my family through adoption. All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!