This is our life…..and I am thankful

A year ago I was holding my month old daughter and playing with my 15 month old son. Life was wonderful and tiring; exciting and scary. Two babies. Thank goodness Katelyn was such a great sleeper early on because we were still having issues with Joey’s sleep. I imagined once Fall started Joey would be in school 3 days a week giving me a few hours with Katelyn, time to go to the gym, get grocery shopping done, or even get laundry started. The reality is, none of that stuff would have gotten done. The first few months Joey was in school, I would get errands ran, but by the time those were done, I had to go pick Joey up from school. That 2 hr and 45 min window went so fast.

Joey is no longer in school (see school drama post). These days I spend almost every day chauffeuring Joey to and from therapy. Joey has to be taken to therapy 5 days a week. Wednesdays and Sundays are our only days home. Laundry barely gets done during the week, grocery shopping is a combined effort between me and my husband, and my house looks like a disaster. I’m exhausted. I’ve lost 10 lbs. I feel awful for Katelyn that she is getting neglected. I hate that two days a week Katelyn is either napping in her car seat or she is sitting in a coffee shop with me. I try to take her to the mall just so she can run around some. Once it warms up outside I will be able to take her to the park or go for walks with her. My husband is exhausted. Money just keeps going out the door. All our extra money goes for Joey’s therapy. My husband and I aren’t sleeping in the same bed anymore. Partly because we don’t want to heat the whole house at night so we sleep in the kids rooms. We feel so disconnected with each other and it’s taking its toll on our marriage.

I will continue to chauffeur Joey to therapy no matter how exhausted I am because it’s working. We will continue to go broke because all of Joey’s therapy is working. We are seeing so much progress with the current plan we have him on, and Joey really enjoys his “play time” with his therapists. This Fall Katelyn will start school and I’m so excited for her. She will have her time, her place, and her friends.

We have a couple vacations planned to the West Coast this year and Ed and I are trying to come up with fun things to do as a family. I feel like our family dynamics will be brighter once Spring finally makes an appearance. Things are crappy right now, and I have to remind myself everyday that things could be so much worse for us. I love everything about my family and I’m really excited to see what our life has to offer us the rest of this year.

What 5 Months of Therapy Does

We are just starting February and Joey has been in therapy for a good solid 5 months now.

Before therapy:
No eye contact.
Lack of social engagement.
No imitation.
Very few words (everyone and everything was “dada”.
Played with toys but not all toys properly.
Unable to feed himself with a spoon.
Unable to fall asleep at unless he had a bottle.
Put everything in his mouth, chewed on everything.
If he wanted something he would push our legs over to the area of where the item was and we had to guess.
Couldn’t jump.

After 5 months of therapy:
A lot more eye contact.
Will seek out someone to play with him.
Talks so much, says more and more words everyday. He will see something, point to it and say what the object is. His words have a purpose now.
He will actually sit and let us read to him and he will chime in on the parts he knows.  Same with songs.  He loves to sing and knows almost all the words.  He wont sing the song but if you pause long enough he will say the next word in the song.  He throws words out all the time, words we didn’t know he even knew.
Loves to jump and hop.
Loves eating with a spoon and most recently started using an actual cup.
He is able to tell us when he wants something, “I want xxxx.” “I need xxxx.”
Uses his index finger to point.
No more bottles at bed time.
When he is ready for bed he lets us know.
Doesn’t chew nearly as much as he did.
He loves movies and will perform some of the scenes in the movie. It’s so fun to watch him imitate.
He can count to 10 and he knows the letters of the alphabet.

Our little Joey is growing and changing so much!  We couldn’t be more proud of our little guy and all of his progress!!

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Round Two of Tomatis

I feel like with the first round of Joey’s listening therapy we had subtle changes in him. He was more playful than before, he would even seek out someone to play with him. He babbled a little more, very little dietary changes with him, and we had a few rough nights of sleep.

When we completed round one, Joey said his first sentence “I want a bar.” (Cereal bar)

We have completed 4 days so far on round two and here is what has happened.

Decreased water in take
Decreased appetite
Less sleep
Very happy during the day
Came up to Ed and I hugged our legs and said “mama!” to me and “dada!” to Ed.
He has been wanting to drink out of a cup more too. He spilled his water and when Ed was cleaning up he said “towel” like he had said it a million times before. We didn’t even know he knew what “towel” was.
The morning of day 5 he woke up and said “happy pookie people”. (He has a book called the ‘Pookie Dance’.

By day 6:
He is eating us out of a house. If its fruit and carbs he wants it in his belly.
His water intake is increasing.
If he naps he will sleep 2-3 hours. If no nap he falls asleep before 7pm and up at 5:30.
He said “Ernie” (sesame street), pointed to and owl on tv and said “owl”.

Day 8:
Still eating everything in the house.
Had great OT and ECE sessions, had a meltdown during speech. He had to have 2 cookies. I was unable to redirect him. He had to have those damn cookies.
During ECE he opened up a game. There were colored squares all over the board with shapes cut out. He took a red circle and put in the yellow square, realized it was wrong and moved it to the red sqaure on the board. He got all the circle, square, and triangles correct.
He played with his sister today.
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Today is our last day of Tomatis. Last night Joey slept amazing! He was asleep by 7:15pm and woke up this morning at 6:15am. He is still eating constantly, lots of snacking throughout the day. More talking and singing. And, he is playing with his sister more….well he’s tolerating her more and will let her play alongside him.

How About We Catch Some Zzzz’s

It’s no secret Joey had a hard time going to sleep. Maybe It was something Ed and I did when he was a baby. We always rocked him to sleep. We never put him in his crib awake and let him fall asleep on his own. Maybe it was the paranoia that he was going to die when we first brought him home causing my husband to check on Joey constantly interrupting his sleep. Maybe I babied Joey way too much. Who knows.

Our nighttime routine changed all the time. We tried, TV, no TV; iPad, no iPad; bath, stories, quiet time, nothing seemed to be working. I was laying with Joey in his bed until he fell asleep now. This would take anywhere from an hour to two hours every night. I couldn’t take it any more. My friend told me her nephew took melatonin every night before bed. S we tried it one night. Within 30 minutes Joey was out, like a light! It was a miracle!!!

We only tried it the one night. Ed was nervous to do anymore, but he wasn’t the one putting Joey to bed, I was. So, I started to give Joey melatonin without Ed knowing. I know it was not the best thing to do, but Joey was so much better during the day. With his crazy schedule just starting, I needed Joey to be at his best. I needed him to focus.

I did come clean after I saw that my experiment was working, plus Katelyn and I were leaving for a week and I needed Ed to continue with the melatonin. Our agreement was I would discuss with the developmental doctor when I got back from vacation, if she said no, we would stop immediately, but she would have to tell me how to get him to sleep.

We met with the doctor after I got back. I told her what we were doing and how much we were giving him and she said, if its working why stop. We weren’t giving him a lot and it was helping. Phew!

We continue to give him melatonin to this day. He has been waking up in the middle of the night, possibly from bad dreams. We don’t know why. Right now we have a great bed time routine in place. 6:30pm we do baths for both kids, after bath we play up in the kid’s rooms and around 7:00pm Joey will ask for his bottle (yes another habit we need to break) and I continue to lay with him. He and I read stories and then shut the light off. I sing to him until he falls asleep. I’m typically out of his room by 7:30pm. I will take this routine any day over what it once was.

School Drama! Merry Christmas Joey.

Joey’s schedule got thrown through a loop. We had Thanksgiving break, my dad was here for a week, and we had some snow days. A lot of days were not consistent.

On Monday, December 16, I went to pick Joey up from school. His teacher stopped me and told me Joey had a rough day. She said he was clawing at the other children in the class. I said ok, I would talk to Michele. I assumed that maybe she was giving Joey a time out when he did this and maybe the time out wasn’t working.

I emailed Michele, as I always did when Joey was having a rough time, since she saw him at school on Wednesdays. This was the second time I heard of Joey not being nice to the other children. I always got reports back that he had a good day at school. When I conversed with Michele she suggested they use the crash corner when he got out of control. On Wednesday morning I suggested to Joey’s teacher she use it. She looked at me like a deer in headlights. I asked her if she had a beanbag chair. She said she did, and I said use that. She said okay.

Wednesday night I received an email from Joey’s teacher asking for a meeting.

Here is her email.

“I just want to make sure and touch base with you regarding Joey. Can we set up a meeting between Dr. G, Michelle (his therapist who comes to school), myself, Miss Millie and Sharon? If there is anyone else working with him, they could be included as well. I think it is imperative that we are all on the same page regarding his educational curriculum and other needs. We all want what is best for Joey, but we need to be cohesive in the decision-making process(es). And I know I have questions on how to handle certain things like whether he should have a toothbrush in the classroom, etc. I am also looking forward to a follow-up from Dr. G on the assessments that both I did as well and what she has done as well as Michelle and other therapist(s) or doctor(s) who work with him or have seen him.

I know it will be hard to find a time that works for everyone, but maybe we could try for a Wednesday since Michelle is already at school on that day. I think the sooner we schedule it, the better for Joey’s sake.”

My thought was, ok, let me see what his other therapists can do. They all agreed they could meet in early January and I even asked if his ABA coordinator could be there as well. I was very confused as to why she wanted the psychologist there.

I received a call from Michele on Thursday letting me know there was more to this story. Apparently Michele and Joey’s teacher were butting heads. His teacher was not giving timeouts to Joey for being naughty in school, but when the other children were naughty they received timeouts. When the kiddos went to chapel, Joey was asked to sit with Michele and be quiet. The other kids were standing, crawling under the pews, and running around. So, Joey was getting treated differently.

I called our ABA coordinator and she and I agreed that if the meeting in January did not have a good outcome, we would pull Joey from the school and increase his ABA hours.

That Friday, we had our meeting with the psychologists to get Joey’s evaluation results. Joey’s teachers were anxious to know the results, they reminded me to let them know that Thursday at Joey’s Christmas program. Here is what I told them:

“I wanted to give you an update on how our meeting with A.I. went yesterday. Medically, they are saying Joey is mild to moderate autistic. Having this diagnosis is great for Joey as it only helps him to more services, but having this label for him only breaks my heart. I see Joey as Joey, not as a kid with special needs. I see him as my loving, smart, funny little guy who has a speech delay and some sensory issues; after all, he is just a 2 year old boy who still does 2 year old things. The last thing my husband and I want is for Joey to made to feel he is different than his peers. I treat Joey at home the same as I would my daughter, my niece and nephews, my friend’s kids. If Joey is naughty at home, he gets a time out. If he wants to bake with me, I let him bake as I have with my nephews. If he runs out into the street and not hold my hand, he gets punished for that as well.

I enrolled Joey at school for Joey to gain social skills. At the time of enrollment I had no idea his life would be as it is today. I still want Joey to be in a “normal” environment, its good for him. He has gained so many skills from being around “normal” kids. I never want Joey to made to feel he is “special”. He deserves to have the same opportunity as any 2 year old out there.

I have arranged for Joey’s therapists including his ABA therapists to attend the meeting on the 15th (time TBD) so we can get a better understanding of what will be best for Joey. I feel it would be good to have all his therapists at this meeting to answer any questions either of you have.”

And her response:

“I cannot speak to what you are going through, I can only say I want the best for Joey and to me, he is also a loving, smart, funny little guy. Miss Millie and I do not treat him differently, but we do address each child’s wants and needs, personalities, and learning capabilities differently and individually. At this age, we have a wide range of what each child can do, as well as who is speaking, fine and gross motor skills, social skills, capabilities, etc. We work with each child when doing an art project for example, and some children need more help and/or want more help than others. Some children excel in one area and not in another, but no doubt, each child is individual and special in his or her own way. They are all a blessing.

But we also look at the classroom as a whole. And each child must adhere to certain guidelines in the classroom. One concern Miss Millie and I have with Joey is that he has hurt other classmates and we have to always ensure that each child is not biting, hitting, pulling hair, etc. And if a child does this, we need to make sure it doesn’t continue to happen as the safety of all children is paramount. We are unable to focus only on any one child as we must focus on the classroom as a whole.

Miss Millie and I have noted how well Joey does when working one-on-one with his therapist. She is able to give him exactly what he needs, the whole time she is working with him. He looks forward to her visits and used to cry when she left. The other children gather around as they want to do what Joey is doing!

I look forward to meeting with the “Joey Team” so that we can all do what is best for him. And we do need to all be on the same page so that he gets what is best for him.”

Based on this email, since they were concerned for the safety of the other children in the classroom I pulled Joey from their program.

ADOS Evaluation Results – December 2013

We had an appointment with the psychologists on Friday, December 20 to find out the results of Joey’s evaluation. We made the appointment for first thing in the morning so Ed could go and still go into work afterwards. Thank God Ed was there to hear everything the doctor had to say. We were blown away by the results. This woman, who has only met Joey one time did not have a lot of positive things to say about our son. Our son who is killing it in therapy. Our son who has come so far from only 4 months of therapy.

She told us that while he is making great strides, he is considered mild-moderate autistic. In the Fall of 2014 Aspergers, PDD, and Autism will all be considered on the spectrum. The labels pretty much go away. Since we were close to 2014, the medical world wants any diagnosis made to just be placed on the spectrum if the child qualifies. And, Joey qualifies. Okay, fine, label him whatever you want, we (Ed, myself, his therapists) have high hopes for Joe.

What the doctor recommended we do was probably the most shocking to us. She recommended we put him in the state run school for kids on the spectrum. It would be an intense therapy for him. A Monday thru Friday all day type of school. The people at this school to us sounded like they are on the more severe side of the spectrum. After talking with a few people about the program, Joey would be tossed into a sea of severely autistic people and basically be a number. So, a nursing home type setting.

If our son is doing so well, why the hell would she say this? Did she see something different? Why would we want to throw him into a special school when our current program is working?? Why not suggest increased OT, Speech, and ABA?

I think the most frustrating thing for me and Ed, is hearing from his therapists how well Joey is doing, seeing how well he is doing, and then hearing this doctor say he needs to go to special school.

So what are our next steps? We will increase our hours with ABA, and continue with our current therapists. I will keep him on fish oil, I will look into changing up his diet, and I will find more ways to help my son. Our ultimate goal, is by the time he reaches kindergarten he will be in regular school, have regular friends, and no one would ever know he had any issues. He may still see someone from ABA, he may still see Heather once a week, who knows, but we want Joey to be able to regulate himself and to recognize when he needs extra help.

ADOS Evaluation – December 2013

I feel more complete when I have my family around. My dad was coming out for a week and I couldn’t wait!!! The day he was flying out I got a call from the children’s hospital that they had a cancellation and wanted to see Joey the next day first thing in the morning to do his autism evaluation. Thank God my dad was coming, he could hang with Katelyn while Joey and I ran over to the hospital.

There were two doctors in the room, and more people watching and recording behind the mirrored window. I thought because Joey had been in therapy he would blow this testing business out of the park! They would see how much he has grown in the last three months and decide officially that he was not on the spectrum.

From what I could tell, Joey passed a lot of their tests. They even tested him on things older kids or even your typical two year old might not know and he got some of those answers right. He knows his letters, knows his numbers, he was able to color match, point to things I didn’t even know he knew. He was still walking on his toes. He was pointing and asking for things he wanted using sign language and saying some words. He stayed focused with all the testing. He would get upset when he couldn’t have something out of the test bag that he wanted.

The testing took forever! I asked the doctor if she had any thoughts on how it went, she said “I’m going to guess PDD.” PDD is pervasive developmental disorder which is on the spectrum. It means he is showing some signs of autistic behavior but not totally autistic. So, in my mind the best outcome! We still have the diagnosis for therapy purposes, but he isn’t really autistic. I left the hospital feeling good.

ABA Therapy – November 2013

In November we added even more therapists to Team Joey with ABA therapy. We see someone from ABA four days a week. On Monday and Friday they have someone come to the house since Joey is in school earlier that day, and on Tuesdays and Thursdays we go to their center in Media. When he is in Media he is with other kids, this way he is able to learn how to play and socialize with other kiddos.

ABA will teach Joey social skills. They will teach him to brush his teeth, how to act in public places (not to run away from mommy or daddy), potty train (YESSSS!), eat with silverware, pretty much anything I need him to learn. They will break down those skills in a way for Joey to understand.

Private OT – October 2013

In early October we added to Team Joey. Heather started seeing Joey at her office once a week. She has been amazing for Joey, and me. Joey loves going to play at Miss Heather’s. Heather does floor time therapy and works with Joey on getting regulated. She has different swings for Joey, tons of toys, and we work on that low muscle tone.

The whole low muscle tone thing was always confusing. Thanks to Heather, I now get it. When we saw Joey’s pediatrician he would (and still does) ask Joey to get up from a laying down position. Joey never could, and still can’t. He doesn’t have any core strength. He is very uncoordinated and lacks some motor skills. If you sing ‘Wheels on the bus’ Joey struggles with the hand movements of the wheels and wipers.

After Joey see’s Heather, it’s amazing what Joey can accomplish. He is more focused and will sometimes get chatty with us. His imitation and imagination his grown immensely since he started seeing Heather. Joey gets on the floor with his cars and trucks and actually makes sounds when playing with them. This used to never happen.

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Child Psychologist Appointment – September 2013

A few weeks after school started, I had an appointment at the Children’s Hospital to meet with the psychologist Child Watch recommended we see. This is the one who specializes in kids with sensory delays. I had made the appointment for earlier in the month but cancelled because I thought it would be a waste of time. I kept this appointment because I wanted to get some clarification on what it meant for Joey to have sensory delays. Never for a second did I think he was autistic. I even walked into the appointment and said, “I don’t think my son is autistic” but I want to know how his sensory delays will affect his learning.

She and I spoke for an hour as she watched Joey. Joey was climbing on furniture, emptying out the bin of toys, walking on his toes, spinning, and kind of a little scatter brained. I still didn’t think anything of it.

When we were finished with our appointment she said, “I think he is autistic. I’m not a wait and see doctor. I recommend we have him start ABA therapy.” I was in shock! All I could ask was for the number of ABA.

As we left the hospital my mind was all over the place. I was scared for Joey. What does this mean for him. I texted my friend Julie right away and told her what the doctor said. When I got home to tell Ed I burst into tears. What did we do to our son? How did this happen? What will Joey’s future look like? So many questions.

I spoke with Julie later and she said not to worry. Joey is doing great in therapy. Get him additional OT, get him into ABA, and don’t let this label get to me. Use it to get Joey therapy, that’s it.

The following Monday when I dropped Joey off at school, his teacher asked me how his appointment went. I broke down in tears and told her what the doctor said. Big mistake!