Revisiting self-feeding

Andy will be three years old in two and a half months. I would love to see him put any kind of food into his mouth. He won't even lick his fingers with yogurt or whipped cream on them, nothing. Lately, we've been seeing him put toys in his mouth, so I thought I should revisit self-feeding.

Every now and then, I try and see if Andy will hold a fork or spoon with my help. I put his hand on it first, but then he usually protests right away and pushes my hand away forcefully. He would also immediately drop the spoon, and not let me bring his hand anywhere near his mouth. Every month I revisit it, and its always the same.


Today, he is grabbing the spoon when I present it to him with food on it. Oatmeal and yogurt have been what we're working with today. He is maintaining the grasp, and letting me put my hand over his hand without resistance. He is also letting me lead the spoon up to his mouth, then opening his mouth and eating the bite. This is HUGE. He always pushes the spoon away in anger, and refuses to eat it.

I told him how proud I am of him for eating with a spoon. He seemed to like the praise. I had him eat almost his whole bowl of oatmeal this way, and later for lunch his yogurt. Constant repetition is what the therapists always say. So, I've got to start doing this more and more. I always see regression with him too, so I am awaiting that resistance again.

He also picked up a large cracker off his tray and brought it to his mouth, which was SO awesome to see. I have been waiting so long for this. I finally feel like, wow, maybe he will actually start to grow out of this infant phase! Thank God, I can't wait.

Thinking of quitting speech therapy for my 2 1/2 year old

Andy has had to miss the last few speech therapy appointments due to being sick, or having terrible temper tantrums, to where I don't see the point in driving him 30 minutes to speech therapy. He's been in speech therapy for 3 or 4 months now, and is really going NOWHERE. Sadly. I was so excited that it would help him, and it just isn't. He will say "mmm" to the therapist to continue play, and that is IT. It's just so maddening, I don't even want to do it anymore. I just want to take a break from it, and maybe return in the summer. It feels like such a waste of our time. A 20 year experienced speech therapist once told me that she wouldn't even bother doing any speech therapy until Andy was three, and his language base was bigger.

He currently says, mama, dada, and up. He will use the sign "eat" and claps for more. He will also say "mmm", if you ask him to say that to get more food, or a toy. That's about it.

Just feeling upset today

Just feeling upset today about Andy not having all the opportunities that other children get to have at this age of almost three. He can roll around, but cannot get into a sitting or crawling position on his own. It makes me so angry sometimes, I just have to let it go, so that I don't go crazy. It's also very hard to be around people, especially family members with normal kids, when all they want to do is complain about their kids.

I don't know what the future holds for Andy, so I can't get too upset for what I don't know of yet. I just try to have joy with the things he loves right now.

Like listening to music.

And going to school.

This is just such a difficult path, I feel that I have to think differently than other parents, in order to keep my sanity. And just have faith that everything will be okay.

I saw a psychic for my child with special needs

The psychic seemed to wow another mommy friend of mine, she said she was spot on with descriptions of all her children, so I wanted to see her about Andy. I've been wanting to see a psychic for a while for reassurance about Andy's future, and I could see her in person or over the phone, we're in Michigan. I booked the appointment online and she only had my first name. I went to her home, because I thought it would be better in person, but she says either way she can get a good vibe. She told me I had two kids, and asked if he was the younger one. I said "yes". She said, "can I ask you a few questions about him? Did he have trouble walking? Like really slow to walk, or it was really hard for him to learn to walk?" I said, "he doesn't walk yet". She said "he feels like an infant, is he still a little guy"? I said, "no he's older" she asked, "is he three", I replied "yes".  She went on to say that he's really bright, and understands more than he lets on. She reassured me that he is going to be fine, that she can see him holding a job, even possibly getting married and that he'll be fine. She said "he is going to be slow to get there, but he WILL get there and he will be a normal individual."She also told me to "stop beating myself up over this, that it's not my fault. He chose you as his parent and chose to come in this way, he chose his path before he came here". I left feeling no more guilt,  and that my son would someday be fine. She told me my path would be difficult, and that I've been dealt a stressful hand, and that he is making a better person out of me.

Hope this helps someone. You can visit her site at wovenwoman.com

Crawling on the horizon at 31 months??

Andy was rolling around a lot on his bedroom floor today, and pushed his butt up then moved forward on his elbows. It was so exciting to see. I hope that he will continue this, and believe me there will be plenty of tummy time tomorrow. I'm hoping it isn't something that we aren't going to see again for a while, that has happened way to many times. It would be so great to finally see my son exploring the house.

Stepping up the Omega-3 supplements for Developmental Delays

Andy started out taking the Lil Critter Omega-3 gummy vitamins, and I am still giving them to his sister because we bought such a huge bottle, but the dosage of fish oil is a little low (200mg or so). He's taken them for around 4 weeks now, and I have noticed minor improvements more so than his usual snails pace improvements. So, now we're ready to move up to something more packed with omega-3 (2000 mg). I take a squeeze pack, and put it directly in my mouth, but the taste is a little too "citrusy" for Andy. He doesn't care for orange juice, so I needed to find a food item. I didn't want to mess with his morning oatmeal, because I didn't want him to start disliking it, but it mixed okay in the peach flavored oatmeal. So instead, I've been mixing the oil in a bowl for him with an orange creamsicle. It tastes great, I just smash it all up together, and he eats a whole squeeze pack now, once a day. I started out with a pea size on my finger, and would put it on the roof of his mouth, but he showed me by crying that he didn't like that.

I am seeing a nice developmental progression in Andy, and I am so happy! He will now hold his toothbrush with both hands and actually brush his teeth himself. Lately I will only brush his teeth using a hand over hand method, where his hands MUST be on the toothbrush every time we brush twice a day. I've tried this a few times before, and have given up, but this time maybe with the help of the fish oil, he will hold the brush and help. I can even let go, and he will do it himself. I have to have him sitting on the floor, I think it helps him concentrate the best.

Next, he loves hearing pat-a-cake, and has recently started clapping, but has never clapped along with the song. Now, he claps for me, while I sing. This is just so awesome. And I tell him, "come on you've got to clap while I sing", and he starts clapping. He will also say "yay" and clap at the end.

I really think the fish oil is helping, because I take it daily as well, and it seems to help my memory and cognition.

I've stopped the l-carnitine, just for the time being, because he is still SO immobile. The problem is that it gives him energy, so when he doesn't move around at all, he isn't burning up the energy he already has. So, it backfired on me, and he wouldn't nap for me, he wasn't tired enough. He was also starting to really protest going to bed at night, so I've cut it out for now. However, I will give it to him if I start to see him crawl. He will be able to use the extra energy boost then, but right now he doesn't burn off enough of the energy he already has. I've read about people with CP taking it, and they feel it greatly helps them with their walking and endurance to walk or even jog. So, I'll keep it around for when needed.

We are trying supplements for developmental delays

The last few months, I've been lost again. Down about Andy, and feeling hopeless. He is now 30 months old, and no sitting up yet, or crawling, or pulling to stand. He does roll around. After a lot of prayer, not only for Andy, but for myself, I feel compelled to try supplements for Andy. I've been asking for strength to keep leading Andy in the right direction, and find him the help he needs. PT, OT, I've lost faith. After a year and some change, we've really seen no results. We just have the school therapists visiting right now, I don't feel the "extra" therapy visits done in a private office are benefiting us at all. Just more of the same.

Now on to the supplements. We, as a family, have all started taking fish oil/ omega 3 gummy vitamins. The kids are taking lil' critters omega 3 vitamins. They contain DHA, which the brain loves, so I love it. I also got adult ones for myself and husband. After visiting the Vitamin Shoppe, I am now trying an orange flavored fish oil "squeeze pack", which has 2000mg of fish oil in it. Nearly 300% of what you need. The kids are getting a small amount on top of their gummy vitamins, which only contain around 200mg of fish oil. The squeeze pack can go right into your mouth, or into a small cup of juice, smoothie, or in food.

I am seeing a difference after 2-3 weeks in myself, and in Andy. My memory is very sharp. I've always had a good memory, but now it's real good. No more mom brain, the haze has lifted. With Andy, I'm seeing him progress slightly faster than usual. His usual progression is pretty non-existent. He's been at a 9 month level for a year and a half. Now he's clapping his hands, pointing more, trying to push up on his hands, and just seems more awakened. He gets his omega 3 vitamins every morning after breakfast, they are right on the kitchen counter so that they are easily accessible. He can chew them up on his own, which is a blessing for Andy. They taste like a fruit snack.

I have also pursued L-carnitine supplements. I spoke to Andy's Physical and Rehabilitative doctor about it first. She says it is a common part of the treatment regimen for kids with Mitochondrial disease. But since Andy hasn't officially been diagnosed with anything, besides brain underdevelopment and hypotonia, she didn't suggest it for him. I have discovered that it is also used for kids with autism and ADHD, and has gotten results of a better attention span, increased focus, and reduced hyperactivity. Fragile X kids also get the benefit of reduced aggressive behavior from it. So, what can it hurt to try?

The main reason I want to give it to him is to increase his endurance. Kids with low muscle tone tend to fatigue quickly. I want him to be able to work with me for longer periods of time before getting tired and cranky at home doing PT stuff. I read that too much L-carnitine can cause stomach upset, so I am proceeding with caution and starting out with a low dose.


The L-carnitine is a liquid, also from the Vitamin Shoppe. It is raspberry flavored and tastes really good, like a raspberry freeze pop. I draw up one teaspoon into a medicine dispensing plunger from the drug store and squirt it right into his mouth. The treatment regimen for someone with autism or ADHD is 500 to 1000 mg a day. I am giving Andy 1 teaspoon after lunch, and 1 teaspoon after dinner, or breakfast and dinner. This amounts to about 700 mg a day. The first day, I only gave 350 mg (about one tsp), and watched for stomach upset, but didn't see any. A much higher dose l-carnitine can be purchased, but I started out with the lowest dose one.

I like what I'm seeing with just a few days of L-carnitine. Much more movement, he has more energy to pursue movement. He is more rambunctious, and I can push him further in his gait trainer, and in four point. He is trying harder to sit up from the floor. I think he simply has more energy and endurance. I've been amazed at what I'm seeing with first, three weeks of the omega-3, then introducing the L-carnitine just over the past week. I researched the internet for answers about developmental disabilities and supplements, and found scholarly articles showing positive results from both supplements. It was good enough for me. I am still waiting to see if this supplement will have a negative effect on his naps. If so, I'll have to cut it back, or cut it out.

If this works, it could be the beginning of Andrew catching up to his age. I'm thinking if he can catch up a few days every week, maybe he can make up a few months soon. The DHA bath his brain is getting, has to be good for catching him up to speed. I am doing it for myself as well. I figure I am not actively trying to learn anything right now, so I thought maybe I'd try to start learning a language or studying something to see how well I can pick it up. We learn what we need in college, then stop pursuing learning when we're done. Maybe, if I pursue learning something new, I can start to pick up some new skills just like I'd like Andy to.

I'm excited for both of us to give these supplements a good trial, for at least 6 months. So, I'll see where we are both at by Andy's third birthday in May.

Andy can push up on his hands at 28 and a half months

Today at Andy's school, he was laying on an incline on a giant wedge, and pushed up on his hands. It was wonderful to see. He had some beads in front of him on the wedge, enticing him. There was also another baby on a wedge in front of him, and the baby was inclined towards Andy. It was as though they were both trying to get to the top of the mountain. The other baby was able to army crawl, and Andy seemed to be interested in him. He kept pushing up on his hands and holding it for a minute or so. It was very exciting to see, after nothing for SO long now.

I then propped his butt up, and got him on his knees and held his hips. He then started to rock, which was also surprising and exciting. So awesome to see this, and he was having a lot of fun at school as well.

I am really hoping he won't lose this skill, as many of his new abilities seem to go away for months after I first see them. I can't wait to see him get his butt up in the air on his own as well.

We went to Disney World

Andy with his (kid sized) headphones from Best Buy

Andy is 28 months old and still non-mobile, and pretty much non-verbal.  However, we bit the bullet and scheduled a flight to Orlando, Florida in mid-September to visit Disneyworld. It is supposed to be the least busy time of year. Initially, we wanted to wait until Andy could walk, but we really don't know when that will be. My 4 year old daughter Gabby is very into princesses right now, and if we wait too long, she may be out of the princess phase by then. So, we scheduled at 4 day, 5 night, Sunday through Thursday trip.

Andy was a dream on the flight there. He didn't make a peep. We kept him entertained with a headphone set and our iphones. He watched Blues Clues and listened to the Black-Eyed Peas. He just got over an ear infection, so we were hoping his ears wouldn't bother him, and I don't think they did. The bus ride there was also great, he was very good.

The weather was supposed to be in the 80s, but every day was sunny and 92 degrees, so this really irritated the hubby and Andy. The heat caused a lot of irritation, and by the third day, Andy was blowing his top. On the plane ride home, he was completely inconsolable, and cried the whole 2 and a half hour flight. I felt bad for taking him, but he did enjoy about 70% of it, I'd say.

Seeing just a hint of verbal understanding from Andy

Today, I told Andy, "lets go say night-night to daddy", and he held his hand way out and said, "da da" then open and closed his hand. While nearing the end of his bowl of food, Andy said "ahh done food", and  didn't open his mouth anymore for food when I tried to feed him. So...I am hoping that these little tidbits will lead to more talking. I think he is finally trying to communicate with me verbally! Thank God! I'm worried sick over him, it is so nice to finally see some results from the speech therapy. He has been going for two months now. First once a week for a month, then twice a week for a month. We are now going to return to once a week for a while. With school starting, he is going to have a ton of weekly appointments, plus private ones. We'll see how much we can handle piling on, in terms of extra speech appointments.