Update on Kaleo's legs

Kaleo has been a toe walker since pretty much he started walking at 1. For the next 3 years he persistently toe walked which caused many callouses on his feet. He had been seeing an orthopaedic doctor since we moved to NYC. He didn't do much for him other than to give him orthotics. He wore those for two years with no improvement. He continued to toe walk sometimes with the braces on. As he became more verbal he started complaining about pain in his legs. He would fall all the time. I kept telling the doctor about this but he just kept chalking it all up to his autism. It was as if he wouldn't take us seriously because of his autism.
A year ago I decided to take him to Shriners Hospital in Philadelphia. From the first visit, they listened to all our concerns. At that first visit the doctor decided to try casting for 5 weeks. Kaleo got to choose his cast color. He choose green for his favorite superhero Hulk.

So for 5 weeks he wore his casts and did pretty well with them. He was able to participate in all his school activities and walked pretty good with them.

after the 5 week we took him back to Shriners and they removed the casts. We were worried about how he would do with the sound of the saw. He laid down with his ipad and his headphones. He surprised us all by doing an amazing job. 

Although after having the casts on for 5 weeks in the warm spring weather...the smell once those casts came off was pretty bad! 

It's been about a year since the cast removal and I can not say that his toe walking has completely disappeared. However, he walks normally about 60% of the time and the rest he toe walks. That's a huge improvement from where he was. 

His leg pain and weakness continues, in fact its getting worse. The doctor's at Shriners felt it was muscular dystrophy. They feel its safe to rule that out based on his blood work. They do however feel it is a muscle disease. They have seen how his muscles are getting weaker. If he is sitting on the floor he is unable to stand up without holding on to something or having someone help him up. They feel his muscles will continue to weaken. We are scheduled for a wheelchair evaluation this week. So this pending diagnosis might be another to add to his list.

It's been an extremely long time since I have updated this blog.

Many changes have occurred.

Kaleo will be 6 next month. He has been in a mainstream classroom with all his support services and 1:1 para since September. He has his moments but overall he's adjusted pretty well to being in a classroom of 21 kids. He was in a 12:1:1 before. I will post how our journey with autism has gone over several new posts.

Autism awareness items I have created

Parent Teacher Conference

Today was Kaleo's parent teacher meeting. I was nervous and anxious a bit. Kaleo had a rough time last year. Im sure it was a combination of moving to a new place (getting used to that), missing all the people he knew back home and getting accustomed to being in school. So last year consisted of MANY meltdowns, very defiant at times, a little aggression and A LOT of crying on both our parts. With this school year I was fully expecting a repetition of all these, however, Im so happy to say that we have not experienced any of these this year (so far). He gets on his school bus very nicely. He actually runs towards the bus when last year it was the complete opposite and there were many many times where I would have to physically pick him up and try to wrestle him into his seat on the bus. Now when the doors to the bus open he says "good morning" to the driver and bus matron, walks up the steps of the bus turns and says "bye mama i love you". He's even gone as far as to wave to me happily from his seat!!!!!!!!

However, after speaking to his OT, PT, Speech therapist and teachers I am simply gleaming with pride. I got the same comment from each and every one of them "He is the highlight of my day. I look forward to meeting with him" Each and every one of them said that to me!!!! It was such an amazing thing to hear!! They all mentioned how funny, smart and hard working he is. My little man!...the same little boy who just a couple of years ago would cry and meltdown in his therapies. The same little boy who would roll on the floor screaming and who at times I was at a total and complete loss as to how to help him.

Today was a good day. It was a day that made me see that although I might sometimes feel as if I'm not doing enough for him I've been doing something right.

Super powers? Me?

I don't have super powers because my child has autism... In fact I'm just a parent trying my best to care for both my kids. Somedays  great.... Somedays I falter but through out it all I keep trying. I don't always know the best way to handle it when my tween daughter gives me attitude or when my ASD son decides he wants to hit me. In those moments I question if I'm doing the right things for them, in what aspects have I failed. 

When he does hit me ( which isn't often..he's actually only hit me twice) I find myself at a loss. I sternly tell him " don't hit me" .....does it fall on deaf ears? Is he getting what I'm saying? Is it registering ? I don't always know. I tell him " I don't hit you, don't hit me" followed by a time out. He usually talks the whole time he's on time out....sometimes even saying he's not my friend and that he's not going to talk to me anymore. 

As always it doesn't take long for him to come and try to hug me or kiss me. Always followed by "I'm sorry mama" it's especially hard to deal with these moments alone.  I don't have anyone that I can say hey just watch them for a bit I need to just lock myself in the bathroom and cry. 

So no, I do not have super powers....I'm not one of the chosen ppl God has decided deserves a special needs child..I'm just a parent....a mom. ....trying my best. 

United States of Autism

Yesterday I watched this documentary on NetFlix, called "United States of Autism". 

It was an 1hour and 25 min of crying, smiling, feeling heart broken to optimistic. It is the story of Richard Everts cross country 40 day trek to speak to different families about their experience with autism. Richard himself has a son who has autism. The families range from very high functioning to severe autism, he even interviews some adults who also have autism. Overall, I thought it was a great film. However, during the course of the film the concept of autism being linked to vaccinations is brought up several times. I've said this repeatedly but here goes .......I, for one, DO NOT care what caused my child's autism. I don't know if vaccines were involved (that theory has been debunked by the medical community) with that being said is there a slight fear when he gets new vaccinations ....Absolutely! I do not know if he has autism because of a genetic connection, I do not know if something in the environment caused it.....hell maybe I held him a little too tightly as a newborn...maybe I gave him a little too much banana baby food or peach or strawberries or whatever. All I know is that my child has autism now. That I need to deal with the now and beyond not the was. If something did cause his autism...well unfortunately I don't own a time machine ala Bill and Ted's ( like my random 80s reference?) and cannot go back in time and change anything.  So why should I invest my energy in that? When my energy is needed for so much more. It's a film I believe every parent who has a child with autism should see. Sometimes or many times as an autism parent we feel alone, just a solitary woman or man fighting against autism. This film shows how diverse and how many families are affected by it. It's also a film I think people who don't have kids with autism or don't know someone with autism should definitely watch...probably more so than those who do. It will raise awareness and you will gain knowledge to something that is becoming an all too real issue in the world. Autism rates are growing exponentially,  it's not going away .... It's time for people to educate themselves with knowledge and compassion. 

Just last week I went to see a specialist for myself. It was my first time seeing her. During the initial getting to know you process of the appointment she asked me what I did for a living. I explained to her that I'm a stay at home mom, who has a 12 yr old daughter and a 4 yr old special needs son. She then asked me what did my son have.  I explained to her he has autism, epilepsy and an arachnoid cyst. Her response was "oh, I'm sorry ". I found myself at a loss for words at that moment. I had never had anyone say that to me when talking about Kaleo. Was that an appropriate reaction from her?  Should I have been thankful for it ? Or should I have been insulted?  Is that a correct reaction and response I should expect from people? More importantly what's wrong with me for not even being sure how I should feel about it lol. 

                                 My Star shine ☀️☀️☀️

Under the waves....

It's been a really long time since I have written anything. I've just been so busy with the kids, myself and just daily running around.

Leilani finished school and is officially on summer break. She started swimming class this week and is really enjoying it.  Kaleo has year round school, so he won't be done until mid-August...then he gets a two week break. Hoping to be able to surprise the kids with a little vacation during that time...but that's still up in the air. 

Kaleo's medical appointments are still as plentiful as ever. His seizure meds were increased a couple of weeks ago. Hoping to get to the correct dosage to control his seizures. Another 24 hr EEG will be repeated in August. They are trying to figure out if his Arachnoid brain cyst is in anyway related to his seizures. 

The white area at the rear of the skull is the cyst

 Another view..it's the black area at the base of the skull. 

We did not know about this cyst up until a year ago. It's something Kaleo was born with and the doctors feel that it was caused by a stroke that he must've had in utero. It's just another thing added to his ever growing list of medical issues. 

On Monday he went to see his orthopedic doc. He decided on three more months of using the AFOs and then surgery. Luckily, wearing his leg braces as not been an issue at all..he actually really enjoys wearing his "superhero legs" as he calls them. He says they give him super powers. He says the same about his medical alert bracelet. Although sometimes he gets overwhelmed and at those times he will say to take off his superpowers because they're too strong.

As always we continue to take one day at a time and enjoy all the beautiful unpredictable moments.