Where Do I Begin

A sunset by my daughter.

Where do I begin? Unless you have been under a rock, I think you all know that we are dealing with school closings do to the Covid-19 outbreak. The pandemic has clearly changed OUR lives. In-between trying to keep everyone healthy and safe, we are also trying to keep our sanity while educating our kids.

When it comes to my children’s education, I like to think of myself of as an involved parent. I do the homework, we read the books and we are forced to over-explain things, often. Then came the Coronavirus and homeschooling. It’s not that it is hard work because my kids are still young so it’s your basic school stuff right now. What is hard, is getting three kids, two with special needs, to focus long enough to get the list of items requested done. This is where my new found appreciation comes in for teachers. They have a class, sometimes up to 26 kids and they find a way to get it all done. My hats off to them.

My biggest challenges are while working with E and keeping them all engaged. Before all of these shut downs, E was spending three quarters of his day in General Education and seemingly getting the work done while getting along. His support was strong and about to get stronger. So this has absolutely put a spoke in our wheels making any successes gained come to a crashing halt. Add to that the new stress of the abrupt schedule change, the emotional and behavioral issues present with E and being told to sit down to work at home has been difficult for all. 

What missing. 

Socialization:

The kids are missing their teachers and classmate interactions. Zoom conference meetings just stress E out more, or over excite N. They leave E frustrated,  as he doesn’t understand the rules. N thinks its like an online show, a time to be a clown. Cleary not the same as in a school setting. E can raise his hand but the teacher may not notice him in the sea of screen faces. This is why we have chosen to no longer do Zoom meetings daily with his General Education teacher. She is awesome and means well but it’s asking a lot for a boy like E. Hands on play with peers helps him a great deal with understanding the rules of the world. He can in real time learn as he goes with teacher or Instructional Assistant there to guide when needed. Where as on an online platform,  it makes it harder to notice or meet his needs.

Structure:

Then their missing the structure of the day.  Kids like E and N, thrive off of knowing what is coming next. Even your typical child takes something away from having structure in their lives. That’s one of the reasons why my oldest likes to read the last chapter of a book first, to reduce the anxiety of the unknown. 

At home, I have always tried to keep some structure but it was easy. I only had them for a few hours during the week before our bedtime routine begins. My kids normally are carted off to bed by 6:30, asleep by 7:30 latest. Most days. Now, I have all these hours to fill and we are all left struggling to either fill the time or find a pattern that works best for us all. I now try to use school language like “It’s PE time” or “Time to do some related arts.”to help ease transitions in the home. Yet with access to technology it has made it hard to keep them on task. YouTube assignments very quickly turn into Ryans Toy Review or Hobby Kids if you aren’t watching with them. So it’s eyes on all, as much as possible.

Support:

E is absolutely missing the trained support that he needs to help get him through a structured day. With less structure, come opportunities for building bad habits. He has an amazing team at school. From his Special Education teacher, General Education teacher, Instructional Assistant and the Districts Special Education Consultants but now he doesn’t have his teacher the way he did before. The IA isn’t there to give him the one on one instruction he needs, it’s all me. They have one way of handling him that works and I feel as though I am messing that all up. The Special Education teacher has done an amazing job of making sure his education tools are there for him. However, he is still lacking some therapy support. With his behavior issues, I find myself struggling some days to get things right.  E is missing out on Occupational Therapy and ABA. I have now become both of those things. Thankfully, he is currently receiving private speech at home online.   When I will get the boys back to private OT during this era is unknown. 

As we complete our second homeschooling packet, now what? We push forward the best we can. Getting a bit more organized each time and reach out more when help is needed but knowing it won’t be the same. It is a flawed system for kids who need support along with their education like mine. They just won’t be receiving those services.  How could they? It’s a brave new world and it seems those who were to supposed to NOT be left behind, are without the right support.

You become great at juggling, doing the best I can from kid to kid, hoping I am doing it right. So I do what I can to make the learning experience as fun us possible, developing my own creative ways to teach them, in addition to the packets they are expecting us to complete. 

Gardening teaches life cycle of plants

Online education built around games (Thanks to teachers!)

Observing things in nature and then learning about them.

As well as life skills. I am teaching how to do the laundry, wash dishes, weed the lawn (E is already an expert at this), scramble eggs and microwave popcorn safely. Small but age appropriate things that can benefit them in the future. Working hard with them to teach the constant need to clean hands.

For now, we push forward trying to find best solutions for all. Managing each child individually, trying to meet those specific needs while working on the school districts General Education requests. It’s not optimal, but it’s something. I remain in contact with all their teachers and make sure to build some special memories for them as well. I realize it can’t be all work, all the time. 

I would love to have my kids go back to school but not until we can get a handle on this virus. For now, I am glad they are home safe with us. If homeschooling is the best way to keep them healthy, then I will do it for as longs as it’s needed. 

My prayers are with the world right now. That you are fairing well throughout this new era. Thank your teachers and the people placing themselves at risk to help others. Be thankful for the life you have been given and grateful for each new day. This is a moment in time that will hopefully change the world for the better.

Would love to hear some thoughts from other parents or suggestions from teachers or therapist to help guide us through this.

We are blessed for sure!

With love and dedication anything is possible!

Check out day

  

It was our last day and we planned to make the best of it. The night before we told the kids the plan. As soon as we woke up we were to get in our beach where and head out to the beach for one hour followed by the pool for another hour. This would give us enough time to go back to room, wash up and clear out. Plan ago. We were up early, as usual, so we headed out to the beach as planned with the kids and sand buckets. 

Things were going well. The beach was fairly empty still and the kids were having great fun. E had seemed to learn to stay closer to the shore line after a wave toppled him over yesterday. He mostly played with the sand trying to build a mote. N was flopping around in the water still looking for shells, lava rocks and bits or coral. My daughter was in her glory playing with two little babies digging in the sand. Everything was calm and all appeared to be happy.

Then, without warning E took off down the beach. I called for him to turn back but he didn’t listen. He just kept running following the shore line, so at this point I now had to become an Olympic sprinter and start after him. Gosh, it is terribly difficult running in sand and my feet are torn up from all the broken seashells I stepped on during the chase. Finally, I grab him. Thankfully, he gets to close to the water and a wave hits him and slows him down. After I catch my breath, while still holding him, I ask him “Why did you run away?” He just looked at me and laughed “I was going on an adventure.” I began to tell him about the dangers of running into the ocean alone. That he doesn’t know how to swim and if something happened maybe we wouldn’t be able to help him. I asked him “what happens if you go in the water and you can’t swim? He replied “I would drown.”  So he gets it but why he doesn’t follow the rules is beyond me. My husband says he is fearless and it’s true but he is also wreck-less. Then again, he is only 6. We left the beach after this. I was done.

As I played in the pool with the kids, I thought about what could have set him off on his run. He doesn’t like the sand feeling, the birds were flying over, the crowd was starting to grow and there were more voices near by, the crashing of the waves, the wind was blowing and his sister was screeching.  That couldn’t of been it because he said he was “going on an adventure.” He may possibly have an ear infection again, those often make him unsettled. Or maybe he just felt like running. Though he is improving, E’s explications are never solid, so I may never know.

I see parents lounging back on beach chairs and their kids playing nice on the beach. Staying close or

Sprinting position

constantly checking in while their parents read or close their eyes. Their is a trust their and a level of comfort we do not have with our kids. I was able to do it with N and EM more this trip but E just kept me up on guard. Seeing this often makes me question the type of parent I am. Maybe I’m not as good as those parents. That I’m not doing something right. Then I brush away those negative thoughts and move on. I watched as he played in the sand. He was content but always looked like he was prepared to sprint off at any given moment. Which he did end up doing. It must be nice to sit back like that, enjoy the sounds of the beach and just be in a relaxed state. Those parents don’t realize how lucky they are to have those moments come easy. I long for that day. I believe it will come but with a great deal of hard work on our end. Well worth it if we can get him their.

There were a few outbursts in the car and likely from being locked down for so long. Despite some of the stresses of the trip, overall, we had a great trip. The kids were happy and we were happy to give them this experience. The more we expose them to things, the better their chances are of having a full and happy life that prepares them for the real world because the real world is rough.

We are blessed for sure.

With love and dedication anything is possible!

Enter the World of Meds

Not to long ago, we succumb to the idea that our son may need a little more help when it came to self control and impulsivity. We had done so much with Behavioral Therapy in hopes that it would help curve some of his maladaptive behaviors but then Early Autism Project just dropped him. The same therapy that is meant to work with and improve those behaviors, used his behavior as their excuse. It was repulsive really but while we were in search of a new ABA provider, we knew something needed to be done to keep him and others safe. Enter the world of Meds.

We met with his Behavior Pediatrician and discussed our  medication options. You may recall me discussing this in one of my other posts. I had genuine concerns about how the medication/s would affect him. My worry is that he could get worse, that the medications could mess around with his young developing mind or that it could be lethal. All reasonable thoughts and concerns. These medications are all stimulants and he is only five years old my feelings were legitimate.

The key for us is that he has a wonderful Behavioral Pediatrician who heard my concerns and understood E’s situation. She knew he was a very bright boy with a vivid imagination who often had sensory and major impulsivity issues that presented poor choice making and sometimes extreme aggression. I wanted to help my son before he hurt himself or someone else. He is super strong and I knew it was only a matter of time. So we agreed to try a drug that was a Non-stimulant first, Guinifance (Tenex). There were some risks involved as it had never been tested on a boy his age but they outweighed the other stimulant side effects so we started him on it right away. To start the dose would be very small, that would increase slowly but not exceed 5mls a day.

We slowly worked him up to 3.5 mls in the am which lasted 12 hours and a second dose of 2 mls once at home. He was showing signs that the medications were working. He was listening to instruction better and was taking naps right after school. However, problems started to present themselves in different ways. He now was falling asleep in class despite having a good nights rest and his blood pressure was a bit low at times. After meeting with doctor again, she decided it would be best to lower his meds. We then went from 3.5 mls in am and then no medication upon arrival home. Then a few weeks went by and he was still showing the same issues but then things managed to get way worse. The school nurse called me stating that he was cold outside but it was 90 degrees out. When they brought him in, he fell asleep and when she took his BP it was dangerously low. The school RN hydrated him, called the doctor and sent him home. The doctor immediately called me and told us to stop the medication all together. At this point, I had already decided this as well. I rather be dealing with the impulsivity and hyperactivity then risking his health or worse his life.

Now he is taking nothing prescribed but is doing a few things differently suggested by the Behavioral Pediatrician. He drinks a small bit of coffee with milk as it has a reverse affect on his hyperactivity. I am sure plenty of parents would be against this idea but I was fine with it. Culturally,  I grew up with a grandmother that gave us coffee and milk as small children so I see no harm in it.  The only issue is that I can’t give him that at school. So I will cross that bridge when we come to it.

We also tried Chamomile drops but it gave him a severe rash. Strangely, he doesn’t have the same reaction when he drinks the brewed tea. He took Genius Drops for focus and attention but that ironically made him more hyper. I have also started giving him vitamins with Omega’s to boost his neurological development. Normally, he refuses all vitamins especially the gummy type ones but he takes this liquid just fine. It is strawberry banana flavored and he and his siblings love it too. The entire family loves Barlean’s Omega-3, and it is highly recommended by our family. For everything else, the search goes on.


We are blessed for sure.

With love and dedication anything is possible!

Losing my help

It has always been so hard for me to let strangers into my home to provide therapies to my son. Obviously I had to be okay with it, he needed the help.  Bedtime became a juggling routine with the three kids all demanding my time. Shower time was easy, I took away baths and put in place a shower routine. Bath times are now special and mostly on weekends.  The running room from to room trying to read and tuck them into bed was still an issue. When I was at my highest point of stress, I surrendered to the idea that I needed an Aide to help us along, especially at bedtime.

Many came and went. One lady actually yelled at my son, in front of me, the first day she started. I was like “Hey NO! GOODBYE!” She was gone before she even really started. We just couldn’t find the right fit until a young girl by the name Holly came to us. She had the right energy and the best attitude to deal with him. She was a Godsend to us. She worked with us until very recently and became a part of the family. She lasted nearly a year before the commute and lack of pay became to much. She told me that she couldn’t continue and I understood though I was devastated. My son loves her, how could I not be. The argument she laid before me made sense. She already had a day job and the night job was just intended to be extra money that was now burning up her funds. It no longer made sense for her. So we said our good-byes for now and try to move on.

We brought in another aide and E really liked her. She was older and a mom with boys so she was able to keep up with the chaos my house can sometime run under. Only 4 days in and she tells me she will not be returning. I asked her did Ethan do something to upset you, was there something she felt she couldn’t deal with? The aide simply told me that this was a secondary job for her and that it was costing her more in gas then she was bringing in. So that was that, we once again were without an aide based on salary & expense. I’m really surprised how these agencies don’t reimburse at least some of the gas expense. If they had done that, it would have made all the difference for us.

We have been through a great deal of aides either because of personal chemistry between my son and them or salary/travel expenses. Now the summer is here and I have no one to assist Us. I’ve gone back to being unable to cook dinner and the crazy of bedtime routine is reaching melting point. I often feel guilty if I don’t get a chance to read to each of them. I have tried to read one book to all three at a time but since they are all at different reading levels, it presents its challenges. Also, its the time of day that I like to catch up on the kids day. Discuss privately any issues they may be having or just give that little extra time one on one. Often, I feel like a horrible mom when someone falls asleep before I am even able to give a kiss goodnight.  It’s clear to me I need a better system. It’s a challenge, I have always loved a good challenge so I have confidence I will figure it out...eventually. In the meantime, the hunt for the “Right” health aide to assist us is on.

Wish us luck.


We are blessed for sure.

With love and dedication anything is possible!

Seeing the changes

Some of my readers know, I have been struggling with my youngest son, E and his school. We felt as though he was not receiving the proper education he deserved or that he was being treated improperly. Not abuse, but lack of skill, knowledge and passion still made it traumatic. Socially and academically he was not thriving in his school. He hated going. Being constantly shoved in a "Quiet Room" did NOT exactly help build a strong bond with the teacher and the room assistants, as well as the school administration.

We were constantly getting calls from the school about his behaviors but we assumed he was getting some work done. To the point that when the phone rang, my husband and I would immediately stress out. The teacher never communicated enough with us about how we can advance him academically or even with the specifics to what they were dealing with unless it was related to negative behaviors. I was always the one asking for homework or for insight on his day. Communications were only about his behavior through app messaging (requested by me) or mandatory paperwork. The avoidance got to be so much in the classroom that my son wasn't learning at all. However, I didn't know this until the 3rd quarter progress report came in. We just assumed he was getting some of the work done. Six months had past and he was losing all that he had gained.

Very quickly, I made an appointment to speak with the school principal to discuss my concerns and she seemed shocked that I was complaining about the teacher and that my child with said teacher was not thriving. Believe it or not, she then told me, I wasn't the only parent with this concern and she isn't exactly aware of what is going on in that classroom. She said she was "in the dark." THE PRINCIPAL. She said she would get back to me. Could you imagine? It felt as though she was blowing me off. I left that meeting with such frustration and anger about the lack of passion she showed that I put a call into the school district.

Finally, the staff in special services at the district office came through for us, removed him from the school and transferred him to another. We were so happy about this. I believe my son suffered some level of trauma while in their care, which built distrust with those from that school. They weren't going to get anything accomplished with him. The move gave us hope that with a new slate, E could finally begin to learn and to love learning. Only a few weeks in and we can already see some positive changes. The teacher communicates regularly with us. Shares not just the failures of the day but also his successes. E shares with us small details of his day in a positive light.

The other night E was using a small learn and play computer, he said he was doing "Homework". He was getting the answers right and asking for help when he was not sure. I was so proud of him. Then to my surprise, he asked for a desk so that he could do more homework. I mentioned to him that in order to do that, I would have to get rid of his Rocket tent and asked if he was really okay with that. E loves this tent. There are nights he prefers to sleep in the tent versus his own comfy bed. So when he said "yes" I cried because that was his way of letting me know, he is enjoying learning.

Don't get me wrong,I know the E still has a long way to go. We are still dealing with behaviors but he is working through them. He is capable. For him to be in the care of others who believe in his potential, who have the training and passion to help him achieve all that he is capable of, well that is just like bringing sight to a blind man. We can't wait to see what is to come.

We are blessed for sure.

With love and dedication anything is possible!

Divine Intervention

This afternoon I was feeling really low, after I was told my son would not be able to stay in his current Occupational Therapy sessions unless I signed a Safety Agreement. The agreement is to protect the staff and patients from him. Ultimately it says, they would kick him out if he showed any aggressive behavior and or possibly call the police, if warranted.

You hear it and you get it, they have to protect themselves and the other patients. I even went in thinking they were going to ask him to leave. Instead, I get a generic boiler plate. The wording enraged me. He’s 5, he’s Autistic and he is impulsive, with current aggressive outbursts emanating from behavior extinctions. A well trained staff would know how to deal with this. Working with an Autistic child that has aggressive tendencies can be challenging but you expect the professionals to be prepared to deal with such issues prior to taking them on as clients/patients.  Trust me, if I could change that about him, I would. I know no one ever wants to be hit by someone else. Believe me you, we have tried to help him and continue to try each and every day. 

This place has been working with him for nearly two years now. He has a major meltdown and they just sit me down next visit and give me a letter. I sat there for as long as I could, then just got up as they talked, told them I would look it over, maintained politeness and just walked away. I was scared for him while he received therapy that hour. I was not going to sign this letter. I wasn't going to give anyone the right to threaten me or my son with arrest for behavioral issues. With all they said and with what the agreement said, I just felt as though I was failing him. I felt awful and frustrated. 

Along comes a staff member, who recently started working with my son and tells me that she loves working with my child. She said “I really give it to you, after last week, I realized it can’t be easy and you’re such a great mom with them. I just love your kids. They are such good kids. You are doing such a great job. I don’t think I could do the same.”

She may not realize how much I needed to hear that at that moment. All I could tell her was that I appreciated her saying so. She provided the boost I needed to shake it off and do what I needed to do for my son. As he was receiving therapy, I decided it would be his last there. As he was working, I got to work too. I found a place that was properly trained to deal with a child like mine.

These things are often hard to hear though you understand the rationale behind it. You just hear your child is not achieving the required goals. Your child isn’t behaving like the other kids. Your child is not accepted. It’s crushing. And yes, I know they may have never actually said that to me but that’s what it comes down to in the end. He just doesn’t follow along. So they refuse to work with him, they discard him.

I can't be alone. Can I? Has this ever happened to any of you parents out there with a young child with Autism?

We clearly have our challenging days but we get through them and move on. Sometimes with a little push of support from someone or maybe, just some divine intervention.  

We are blessed for sure.

With love and dedication, anything is possible!

Autism Island

I absolutely understand where dad, Shane, is coming from when he spoke out on Facebook about his sons forced isolation.  Isn't this just another form of bullying? Maybe, maybe not. Every kid certainly has the right to invite who they want to their own party. But...

My now almost 7 year old son was invited to only one party last year and before that none, other then family functions. No invites for him this year either. Does he think about it? Not really, until he hears the kids talking about a party coming up or one he missed. Then it's an hour long conversation about how there is nothing wrong with him, some kids just don't realize how special he is or that not everyone is meant to get along.  I have seen kids be treated badly because they are  "different". We can't put the blame on children alone, I know that the parents have a lot to do with this. I have seen parents give me looks or directly make comments about my youngest son and MY parenting skills. One woman told me not to bring my son to play dates anymore with his sister. She just felt it was "too much to deal with" for her and that it would be "calmer if he wasn't there". Needless to say, I deleted her number from my phone but only after telling her a few choice words.

Instead of passing judgment, parents should take these opportunities to teach their kids about something outside their own personal box. Different isn't a bad thing. Trust me, I know it is impossible to live in a world where we all get along. Personally, I know I am may not get along with all my neighbors but I am not going to treat them badly because we may see things differently. I will continue to be courteous.  I certainly would never exclude a neighbors child from one of our parties simply because I don't like the parent(s).  I'm not asking that parents force their child to be best friends with mine or have them over all the time. I'm not conducting a social experiment with my kid. It's just a small moment in their lives to show acceptance and understanding amongst their peers rather then being out casted to Autism Island.

Both my boys have the sweetest hearts and our unbelievably loyal, they just happen to have Autism. People that make the choice to exclude them are missing out on a teachable moment for their kids. For themselves as well. Yes, they have difficulty sitting still, they talk too much, too loud, or do not speak at all. Yes, they may not acknowledge you when you address them right away or at all but there are ways to help them participate. Leave it up to us the parents to navigate them through that social experience. They just need to be given the opportunity. You the parents of the "Typical" kids could teach your child kindness, patience and understanding.

Shakespeare wrote "If we’re like you in everything else, we’ll resemble you in that respect." It is simply paraphrasing the Golden Rule but in the story, The Merchant of Venice,  it speaks of the negative aspect of treating others badly and its chain reaction. So I have found that connecting with other like minded parents works best for us. We may not all be best friends either, not all of them have kids with Autism but what they do have are kind and open hearts and their kids share those qualities with mine. Acceptance is a hard thing to find in this world but that falls on us.

In the end, isn't that what we want for all of our kids, to be kind and accepting of others, so that others may be kind and accepting of them, no matter how different they are?


We are blessed for sure.

With love and dedication, anything is possible!



To learn more about The Life of Reilly click the link.

Kudos to Reilly's mom, Christine and especially dad, Shane, for saying what so many of us often feel needs to be said. Keep up the great work in teaching us all.  And to Reilly, who unknowingly is teaching the world with out saying a word.

A question about Autism

My daughter came up to me today and asked me a question. I was kind of taken off guard when she asked me this question and honestly at the moment, I didn't know how to respond to her. I didn't imagine that at four years old she would be asking me this already. I thought maybe I had at least two years before we dove into this. She asked me "Mama, why does Ethan always have to have the autism?"

We have had her watch Sesame Street's introduction of the new character Julia,  that has Autism. So she does know that E and N have Autism. She seemed to understand it, asked some questions and she seemed content with my answers. So it seems now, she has more.  I took a deep breath, took a moment to think about my answer and came up with this.

"Well, you see Pudding Bear (nickname), that's just the way God made him. It's not a bad thing, it's just the way he is."

She then told me "but I want him to be just like me." Hearing this kind of made me sad. Sure things would be easier if E didn't have Autism but I wouldn't trade him for anything. To me, he is perfect.

Then I told her this, "Just because someone isn't like you, doesn't make it a bad thing. Being different is what makes us all special in our own ways. Why don't we treat E like he doesn't have Autism. Treat him like you would want any one else to treat you. When you see he's having a tough day and a hard time, show him kindness, care, patience and love. That's all anyone really needs baby." I watched her as she thought about my answer.

She sat there quietly for about a minute, which is a lot for her, shrugged her shoulders and said "okay mama."

Then she walked over to her brother, patted him gently on the head and asked him if he would like her to put a movie on for him. She gave him a kiss on the head, walked away to get the remote and called me over to put his show on. It was a precious moment.

I can't say I handled this expertly and maybe some of my answer didn't compute with her but I am happy with the results. She showed care and compassion to her brother. They don't always get along, most siblings have their days where they just don't get along and parents become referees. With E's temperament, it happens more often then not.  Which is why I think my daughter posed her question, out of exasperation. That said, they have really good days too. Where they tackle one another in hugs and cuddles. Those moments much like how this discussion with my daughter ended are awesome.

We are blessed for sure.

With Love and dedication, anything is possible!

When the spinning gets out of control

I like to think I'm a good mom, at least I try. This week however,  I would have to say I am mediocre at best. The boys can get bored of the Sensory Diets in place so every now and then it needs tweaking. The boys have just been spinning out of control. Some days, they are literally spinning out of control, like spin tops, circling and bouncing off of walls and furniture until they fall.  I know this meant they were in need of some new sensory play but honestly, I've been so tired.  I get run down trying to keep up with it so I know I can't blame them. So what do I do for my reality check?

Most importantly, I ground myself. Just like my kids, sometimes I can feel like things are spinning out of control. Kids screaming, jumping, climbing or fighting will do that to you.  Unlike them, my spinning is only in the figurative sense. The best way I ground myself is to breathe. Allow myself to listen and feel each breath. That is honestly the best thing I can do. Once that is completed, I take a good luck at the boys and remind myself the kind of mom they need. Key word, NEED. Parenthood is a stressful job, put a child with special needs into that equation and it's doubly hard. Reminding myself that they need me helps me mentally realign.

Once I am in check, I start making the calls to the Occupational Therapists to get feedback and ideas for the kids. Now I know they haven't been getting enough sensory play but I also know they get bored of doing the same things so I am always looking or asking for new suggestions.  I could beat myself up on how I fail them by not always bringing my A game but what would be the point. They don't need a mom who wallows. They need a mom who gets it done.

Here are the latest suggestions for the boys sensory diets to help calm them down a bit and allow them to feel more grounded.Couldn't we all just be more grounded?

Proprioceptive Activities

When they receive enough sensory play, they are great listeners, attentive and super calm. Getting new suggestions benefits us all as a family.  I do whatever it takes to ensure that all three of my children grow up in a home that is loving and attentive to their needs but sometimes you just need a minute for yourself. It's a struggle and I may take a mental hiatus sometimes of what I need to do but it doesn't last. It can't, my kids need me to much.

Thanks for following and have a blessed day.

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Vacation was a learning experience

Vacation Travels 

My husband and I use to love to travel. With our first son we continued to travel though most trips were kept within the states. Yet, since the twins birth, we as a family have not taken any trips. The past three years have been strictly focused on adjusting to life with multiples and my singleton. We decided it was time to take a vacation.

We headed to Pennsylvania to visit my friends, then to New York and New Jeresy to visit more family and friends. 

The road trip wasn't as bad as I imagined. We stopped five times so we could allow the kids some play time. Making sure the boys got in some sensory time. We went to one park near Madison University that my kids absolutely loved. It was completely made of wood and it was like a jig-saw puzzle and maze in one. Great fun.

Pennsylvania went great. My friends house is pretty big and full of stuff for kids, so my kids were entertained. E seemed to love the staircase. We all must have gone up those stairs at lest 10-15 times. I was so proud of E because despite it being a new place with sort of new faces he adjusted fairly well. He even gave out some hugs and hand holding. If you knew him a year ago,  you would know that this is a huge deal. 

Then came Jersey and seeing grandparents. He loves them and so I know he would be excited to see them. But we didn't give him much time to adjust to new space or place. We dragged him in hotel room, then dragged him back out to take him to a park. I went on the insistence of others but was weary of how he would do. He didn't like the change of car,room,car, stroller. He fought us on that but once we let him play he was happy. He was running from one end to another because it was a great deal of stimuli for him. He was happy and enjoying himself so I let him have his fun. 

The next day was when things went bad for a moment. I thought that we were going to the zoo. I planned mostly quiet and serene activities for kids.  What I wasn't prepared for was the amusement park next to the zoo. It's nothing big just a few rides for kids and a few games. But for E, it must have been a nightmare. Kids screaming, bells going off, the rides making their own specific noises and then the voices, so many. He went on one ride ok, the train. E really liked it but I think it was so exciting for him that it spun him out. We tried the carousel but he wanted no part of it. He wanted to go on a car but he couldn't decide which one he wanted and then refused to be buckled in. "I want red car." I took him to red car but the inside was yellow, "No, I want red car!" Now I was questioning his knowledge of colors. Switching from car to car, finally I got him buckled in, he freaked. I asked them to stop ride. He was wailing and kicking. Scratching at my face and glasses. Even ripped some hair out. That's when I experienced it. I started to see people as if they were talking about us, starring, pointing, perhaps even criticizing. One woman was even bold enough to say "Wow,  looks like you have wild one there. Is he always like that?" Not sure why people feel the need to comment or shame you. She was lucky I was with my kids.  Then E ripped and tore at me again as we tried to leave park. His dad then took over. I broke down in tears. This place, a place most kids would love, was obviously painful, perhaps even tortuous for E. We had to get him out of there. 

I sucked up my tears and jumped back into super mom mode. His dad tried a ride with him but that didn't go well either. I grabbed him and took him out of amusement park. Found a quiet spot and calmed him. He was wound up bad. So I let him walk a bit but he was running and tossing himself on ground. I took him and sat him in the stroller. Hydrated him but he tossed the bottle around instead. I let him. Even made it into a bit of a silly game. We started to move. Things got quieter and calmer. He was finally silent. We looked at animals and eventually he fell asleep. It was all to much for him, exhausted by his outburst he slept. Kind of like how a computer has to reboot after a system crash. 

After that,  the remainder of the trip went fairly easy. E had a few small outburst but nothing like the one he had at the Flushing Park. My new mantra "Face, Space and Place." Give my son E enough time to adjust to people even if he already knows them. Don't allow people to come at him fast, loud or touch him. And be sure to find a quiet place were ever we go. 

I recently watched this video from The National Autistic Society and I found it to be very insightful. It gives the Autistic perspective of the world around them. Whether you know or don't think you know anyone with Autism you should watch this. I watched it in a dark room with headphones and held the smart phone close to my eyes to really try to give myself the feel of the video. Try it, see if you can make it to the end comfortably. It changed the way I see everything now. Click HERE for video

NOTE OF THANKS:

I want to thank the staff at the Fantasy Forest Flushing Meadow Carousel and Amusement Park. They gave me a red band to wear that noted to staff that we had a special needs child that would require more time to adjust to rides, require a gentle approach and made them alert incase of wondering/dangers. They were super with E. Even when he was screaming and fighting,  they remained calm and supportive of us. Though it was a nightmare for E, my other two kids loved it. I appreciated the care they showed us. 

Now all I need is a vacation from my vacation. We arrived home and happy but emotionally and physically drained. It will be awhile before we go on any vacations again. 

Food Aversions or a.k.a. Picky Eaters

Toe so good

Moms always complain about how their kids are picky eaters, it can be so frustrating and concerning.  You want your child to eat and eat healthy choices but picky eaters have a different plan. A picky eater with Sensory Processing Disorder (SPD) and or Autism (ASD) can be even more troubling.

My son is probably the pickiest eater I have ever dealt with. Honestly, most days I think he would sooner eat his own toes then eat meatballs or mac and cheese. Seriously, I have seen him eat a crayon no problem but roasted chicken, no can do. In order for E to eat something, especially a new food, he has to allow all his senses to approve the food item before he eats it. Its a process that he takes time with.

Here are the steps E goes takes before eating something.

Step 1: Looks at food
He stares at it from a few different angles. At this point, if he doesn't like the way it looks, it's on the floor or he starts screaming. He use to freak out over diced carrots.

Step 2: Touches food
If we manage to get to step two, he gages feel, temperature and texture. E tends to like food that are either really hot or cold and in the white or beige family of foods to touch. It will end up on floor or it passes to next step.

Step 3: Smell
So this is where E simply smells the food. Disapproves floor, approves next step.

Step 4: Taste
This is where my son will decide if he will bite the food. E takes a lick or simply touches his lip or tongue to the food. If it passes the test he will take a small bite. I mean small, bird size. Often the food ends up on the floor because he took so long to get to step 4 that the temperature is no longer how he wants it or he doesn't like the texture of the food item when chewed.

Right now E lives on Greek Yogurt (Banana only), bananas, smoothies with veggies snuck in, Keifer shakes (Strawberry only), almond milk, bread untoasted with Honey, bread with Nutella and Chocolate chip granola bars. Just recently he has stopped eating pizza, has tried chicken nuggets but they must be hot and banana with Nutella. He seems to like his things on the sweeter side. It's fairly healthy but I still feel like I could get him to eat more veggies and solid proteins. Perhaps that is every moms plight.

I long for the day that I can make a pot of Mac and Cheese, place it in front of my son and he eats it. Maybe not even all of it but a bite or two. In the meantime, we test out foods and hope for the best.

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Bells and Alarms

Paired sleeping for comfort

Bedtime in our house is a familiar routine to any other household with kids. You know, that mad frenzy to get the kids fed, washed and clothed for bed. You pray you can get it all done before 9 pm so you can tend to some house chores and maybe get a chance to shower before you crash into bed. It was a night just like so many others of wrestling to get kids down when I found myself thinking back on simpler times that I recalled something about E.

When E was just an infant, he always seemed to prefer to be swaddled for bed. He slept best that way. He seemed to love to be held close or snuggle with his twin sister in the crib. If you put him down alone and unswaddled, he would cry. We thought it was because he was colic. But as he approached the 1 year marker, he liked me to keep my hand on his back while he fell asleep in his crib. Many nights I stood at his crib side, my hand on his back. If I removed my hand he would cry or wake. So back my hand went on his back. I became a pro at alternating hands with out him feeling my switching of hands. It was exhausting. And God forbid his sister would wake, then I just had a cry fest on my hands.

Many times I thought of filling a dish glove with rice to lay on top of him to try and give myself a break. My concern was that some how that could hurt him, so I never did try it. Little did I know that weighted blankets would be in our near future.

Nightly headstands

After the year marker, he liked me to hold his hand or rub his feet. Eventually, he just wanted me in the room with him. He would stand on his head or ram his body against crib. So every night, I lay on the floor with the twins as they fall asleep.  Stopping E from potentially hurting himself. Some nights are more of a struggle then others but it is improving. No more body ramming or headstands since we give him plenty of sensory before bed. Melatonin helps him settle down a lot quicker, as well as a drop of essential oil on his pillow and woobi (security blanket) to help him focus on his breathing.

In any case, I thought back on this time and realized that he was seeking sensory stimulation even way back then. I also made the comparison in my mind in regards to my eldest son. Another sensory seeker from early on as well all though we are just now learning that this is what he too has. E, still loves a good tight hug so long as it's on his terms, loves joint compression, a good pillow squash and is slowly starting to enjoy the brushing. Both my boys do.

Bells and alarms.

I wonder why I didn't put it all together sooner. Was it lack of experience as a mom or denial? Perhaps both. My first son, N, met all his markers on time if not earlier then most kids. And E, my second, did not, so it was easier to notice some potential problems for him. So how did I miss N's sensory issues. Early on I though maybe there was something going on so I had the school evaluate him for potential behavioral problems at two but they thought he was just high energy. But there were signs, the late speech development, the covering of ears, the constant jumping and moving, the slamming his body into yours for hugs, the unexplained outbursts/fits, jumping from high heights, banging his toys down hard. Honestly, his hugs feel like a Mack truck is trying to run you down to the ground. Kisses that squash your face. Anxiety. I mean I should have known something earlier but I just figured because he is so bright that he was quirky. I LOVE quirky. And the professionals were telling me he was okay. My boys are healthy and happy, it's all a mom ever really wants to hear. But I kept pushing for answers.

So now at 5, N has been formally diagnosed with Sensory Processing Disorder and is now receiving Sensory Integration Therapy through Occupational Therapy. An answer and a solution.

Having these diagnosis' for my kids doesn't make life any less challenging but it gives us a great deal of explanation and motivation to get them the help they need to be successful in life. Do I still long for simpler times? Sometimes. But truthfully, they were never REALLY simple. Nothing ever is.

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Signs that Early Intervention is Working

Nearly a year ago my son lost all speech. He never said mama,  stopped saying daddy and rarely babbled. It's the reason we had him evaluated and sought out help for him even when others were saying "he's just a bit behind." Even our pediatrician didn't think anything was wrong but my gut new better. 

I would have given anything to be wrong but taking the time to prove it to myself turned out to be a good thing. I trusted my instinct, I wasn't wrong and though that was disappointing, we got him the early intervention and today something awesome happened. 

E's ABA therapist was over working with him on requests. 

ABA: Would you like a show E?

(He often gives signs or brief 1 or 2 word answers.)

E: No, I wan Wall-e and Eba. (No, I want Wall-e and Eva.)

I heard it clear as day. Had I not been in the room,  I wouldn't of believed it and more importantly, I wouldn't have heard it. I cried. My son had spoken his first true sentence and it was a spontaneous response. It was so awesome. 

Then E topped that. He knew what he had accomplished, I seen it in his face. I was so overwhelmed with emotion I had to walk away briefly. When I came back into his sight, he walked up to me and said "mama" and dipped his head. A sign that he wants affection. I kissed him and he raised his head and arms, now he was asking for a hug. As if he knew I needed it more then he wanted it. Either way, I happily obliged. It was a great moment. 

He went back down and back to his ABA to watch  Wall-e. We were beaming with pride. I still am.

He has since reverted back to his normal two to three word phrases but I know it's in there. His mind just needs more time to learn how to get it all out more consistently. 

All I can say is trust your instinct, fight for your kids, be their advocate and get them the help you think they need. In E's case, Early Intervention, Speech and ABA helped him get to this moment. I am thankful for his team every day. 

Just a note of thanks:

Mrs.Sallie you've helped me as a mother, a friend and family advocate. My son may not have received this help early on if it were not for you telling me to trust my thoughts. "A mother knows..." Thank you for supporting me and centering me as a mom. I know you will say it is your job to help but I know you go far beyond that. You are truly an angel on earth.❤️

Ms. Jill, I can't say enough about all you do to help and encourage E to speak. You are so great with him. You have become a very special part of our family and we are so grateful to have you as E's Speech Pathologist. We know E loves you just as much as we do. You helped make this happen. You Rock! 

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Building a Strong Team

For the past year, my son was already receiving Early Intervention and we built a team around him that is strong. Here's why I think having a strong team is so important not just for the child but for the entire family. 

Let me first explain Early Intervention. Early intervention includes but is not limited to the following services:

- Provides families with a plan
- Supports services and resources for children that enhance daily opportunities for learning
- Provides visits in settings where a child would be if he/she did not have developmental delay/disabilities "Natural Environment"
- Special instruction/family training/support
- Organizing nursing services, social work services, nutrition services (food therapy)
- Assistive technology devices and services
- Physical therapy (PT)
- Occupational therapy (OT)
- Speech Language Pathology (SLP).

In a nutshell, the Early Interventionist (EI) assists in meeting the needs of the child as well as the needs of the family.

Back in July of 2014, I had my son first evaluated to see if he qualified for Early Intervention through BabyNet (a government organization that helps with special needs children). When I was told that he did qualify for further evaluation. They sent us to another place where I had to fill out some paperwork on him and sit and answer questions regarding his behavior. They sat us in a room, asked him to tend to a few tasks while also doing things around him like blowing bubbles or making noise. Thirty minutes later, we had a starting point. It came back that he might be autistic so we very quickly started the process to get him the help he needed. 

First I lined up his Early Interventionist (E.I.) to assist and support me in getting all the therapies he would need. We chose Carolina Behavior and Beyond because they came with great referrals and the founder has a very personal understanding and relationship with special needs. Through their evaluation, we new he needed Speech Therapy (S.T.), Occupational Therapy (O.T.). Through the BabyNet evaluation we knew he would need ABA Therapy (Applied Behavior Analysis is the application of the principles of learning and motivation from Behavior Analysis.) 

We were fortunate to get his Speech Therapy through Columbia Speaks Speech Therapy in just a few weeks. His ABA through Early Autism Project which took about two months and Occupational Therapy took about three months. Occupational therapy was the hardest to find. One because the surrounding area doesn't have enough Occupational Therapist and two, not enough of the OT's are trained well in Sensory Processing Integration.  His OT started out at Palmetto Health Orthopedic Therapy and all though they tried to help him there, I just didn't feel as though it was working out. He wasn't getting much accomplished. So when the wait list opened up at a new location, I jumped on it and he now deals with SPROUT Pediatrics for Occupational Therapy. Here I feel they are more knowledgable on the subject as they already deal with kids with Autism and or Sensory Processing Disorder on a regular basis as well as having a personal connection. Though I would like to have him receive Food Therapy for his food aversions, I am more focused on getting him talking, attending to his tasks and connecting so I try my best at home on my own but it will come in time.

It was important to me as a mother to know that the team I surrounded my son with are people who truly care about him first. I couldn't be happier now. It isn't perfect (what is?), we have had some bumps in the road but I feel supported and my son has been showing great strides in improving his speech, connection to us and the world around him. It's been only ten months since he has been receiving all of his therapies and he his speaking more and more., Engaging with us and learning more every day. He still has a long way to go but he has a strong team and I am confident he is going to be okay. 

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Diagnosis Day

You prepare yourself for D-day. You suspect it, you convince yourself that the worse case scenario is still better then most. Convince yourself that diagnosis will help. You say the word/(s) regularly to reduce shock value. You do your best to prepare but the news is coming and your still not sure if your ready. Then you hear the words "I summed up his ADOS among other things with my notes...." What seems like longest pause ever. " And well, it looks like your son did test for Autism." Crash! It's reality.

To some extent it was a huge relief but also a big let down. We heard a lot of mights, maybes and ifs but nothing concrete. More then anything, I was relieved because we finally knew what he was dealing with. Yet the mom in me, the irrational part of me, wanted to cry, wail because how could my "perfect" boy have Autism. 

You go through all the scenarios even while the doctor is spitting information at you.  I'm thinking, I just didn't take enough prenatal vitamins, I was to old, on to much bed rest, not enough rest, stress, twins, maybe the IUI drugs, etc.  Words and thoughts swirling in my head like a cyclone. What could I have done differently? I tune back in to hear "tested low to medium." That's good, right? "Yes, that's good." 

Then Doctor C. begins to discuss game plans for him. Many which we already have placed, speech therapy, occupational therapy, ABA(Autism Behavioral Analysis), school. She reassures me that he will be more then fine. That he is very bright and has come along way in only 10 months of early intervention. I remind myself that only 10 months ago he had stopped talking all together, wouldn't look at me or even let me hold him gently. I knew even then, I knew but now I know. 

To some aspect I guess a mom always knows but denial can be powerful. Even as I started him down this process, I fought my denial in search of answers and I got what I wanted, an answer. The answer is Autism. 

Of course, now I have a million new questions and a new search for answers but the most important answer I have is that my son will be okay. My son may be living with Autism but he is not Autism. He is perfection, beauty, brilliance, lively, happy, unique and a loved little boy.

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