January 2020 Doman Program Kleefstra Syndrome Journey.....

The new Year for us Started a bit different than other families It sure seems my life can’t be the slightest Normal or laid back. I don’t know why I can’t lose weight seems like Liam was diagnosed and my metabolism told me it had Kleefstra too and took a nap ... a permanent nap that is.

I never realize how alone parents of special needs kids are. I mean having friends people to come over and hang out or that just understand the melt downs, the program and just the new day to day life. Even volunteering to maybe come Hang out and help a little guess it’s scary and they don’t understand so easier to stay away than to learn. And having a caregiver is more for people in countries that care to help people . America well not so much no help just tons of red tape and lots of reasons why you don’t qualify even though Liam is diagnosed with a disability that could affect him forever .

Praying I can beat those odds and I know I can I just have to continue to have Faith.

As far as the new program... The coordination has improved so that’s great but didn’t keep him from falling down the back steps Friday morning on the way to school, I think I cried more than him. His pain tolerance is so high. I came in checked him from head to toe his poor neck caught the edge of the stair I was so worried !!! Got in touch with our doctor and we are fortunate it all looks external and he would probably just be bruised .... I hate those stairs they go straight out the back door no flat place to step on and of course now with how small it is getting thru that room and then outside I just feel sick bc he got hurt. Literally sick and now yes I can see his little neck hurts but how do I know what else bc he feels little pain and he can’t tell me what is wrong . It’s getting better. You might say it’s good he doesn’t hurt but it’s not bc you don’t know when they hurt . But one thing that I do notice is he was pointing to his neck and anywhere that hurt when before he would tap his head only so if he was hurt we never knew what hurt. I see loads of little things changing I’m hopeful for him. Hope people don’t think it’s wishful thinking and there is little change I just know where he is now and where he was.

Our mornings are hectic for the most part we wake up to potty time. And we mask , I make him breakfast which is supposed to be weighed measured and logged for and mask again. When potty time is over we go to breakfast and mask again. We then take our vitamins in our breakfast . We read our homemade books and do our words . Log rolls are still a challenge . He laughs but is kind of not into them still trying tho. He walks a lot we are trying to meet our running victory which is 100 yards and we mask more .

I just feel totally alone trying to do a program that seriously needs more than one person. It’s super intense , super demanding and it takes every second away from anything you’ve ever done before. I miss taken showers longer than 5 min so if I get a quality shower or bath it’s in the middle of the night or getting up earlier. And when I’m sick we’ll no time for that either have to push thru. I felt so bad one day this month I did let him play with his game and gave him a day off. I felt terrible about it.
Started back immediately the next day good thing is he loves his books and masking he loves routine . Liam definitly loves ROUTINE

Still waiting for Chris to finish the table so I can hopefully get a few people who’ve agreed to help me to help get him into patterning this hopefully will help him with his coordination more so we won’t have another stair episode . 3 is enough. I’ve even fallen down them before .

Crazy Liam got hurt but not scared of them at all it’s like ok I got hurt but I’m ok so back at it. Kids rebound so much faster than us. I mean geez I fell in the shower will be a year in April and still have a bad hematoma spot.

Life gets frustrating when I’m sick I can’t go to the doctor bc I don’t want to expose Liam to anything to cause him to be sick and I can’t go to dentist bc I don’t have a way to take a 4 year old to my appointment . I miss getting my teeth cleaned it’s been a big thing for me to always go I mean I pay for insurance and it doesn’t cost but it’s the life of having nobody to help with your sweet boy that you can trust . He doesn’t speak and people are busy. Appointments never work out the dentist was calling me for cancellations think they gave up when I never could come.
Need eye appointment finally broke down and did one of the new ones online because I have to see!!! I am not saying any of this for people to feel sorry but for people to understand the true aloneness of working and trying to help your child with a special need. As easy as someone might make it look it’s never easy! I’m blessed he is happy, Healthy and does keep me laughing pretty much most of the day. I just wish I had a real person to talk to sometimes. It’s lonely when you drive 1800 miles with no conversation other than what you say. Or talking and the most you get back is pointing but the hugs and kisses are definitely a big big plus I do get loads of those!!! They make it worth it all.

He makes it worth it all watching him jump around , dance, be silly, FaceTime everyone and hang up on them, and giggle and play with his toys. I love seeing everything he learns everyday. Love seeing him learn how to play and not just make a mess. He’s learning. He’s smart, he’s happy. I am blessed! But being blessed doesn’t mean I don’t feel alone in this journey most of the time. Emotions are definitly something that are on my shoulder a lot lately! I feel i am going to totally fail this program. I just couldn't live with myself if I fail him. I just can't! And that is what keeps me getting up when I hit snooze a million times and what makes me realize this time with him isn't promised I am grateful for everyday ....

Michelle www.runwithliam.org