Dominic's new IEP

Today is a day I dread every year. To have to do it twice (once with Dominic, and then with Damien) is even more of a pain. Dominic's is always in April, Damien's in May. I hope today goes well. I think for the most part Dominic completed his goals well this year. Nothing has been said about medication although I have expressed that I would rather not put him on ADHD medicine. The only thing that had been said this year was that Dominic may have PDD's of Autism which we have been hearing since he was in 3 yr old preschool.

So hopefully it will go well and we'll get some good goals or better yet maybe he'll graduate! That would be awesome! I doubt though but as he goes through each year he has grown greatly by the end. It will be interesting to see the goals they have thought up for him!

It's been awhile!

I haven't updated in forever on here. There's been alot going on with the boys. I'll start with Dominic.

A few months back we had parent-teacher conferences. His teacher wanted to tell us something but as she said she didn't know exactly how to put it. Dominic did "things" that are different than the other kids and she wanted to bring it to our attention. She went on to say that she didn't want to say he was autistic by any means but carries some autistic traits. I flat out told her not to feel standoff ish about informing us because I have been aware for 3 years. She was really worried to say anything. I told her in Early Intervention that they had classified him as PDD~NOS but we have never done the actual testing for it. He has done SID and ADHD testing which showed he has both. She said at this time she didn't think we should have him tested because another label isn't going to do him any good which I agree really! Just more crap for the school to say something about. His sensory issues have been mild lately except for nearly ripping off his skin due to certain fabric feels. Sounds are still bugging him alot too. Sometimes it gets way too loud in our house which can cause him to act up or cry. He cries alot over just about everything. It's so hard with him. You have to watch what you say.

Dominic had his tonsils taken out a few weeks ago and I was told this could fix his attention, behavior, bed wetting, and snoring. It's fixed 2 out of 4 so it did do some good for us! He's no longer snoring or wetting the bed!

Damien is doing better at speech but still way behind. He's starting to learn little one words like dog, cat, ball. He still does alot of sound effects for certain things instead of calling them by name. His tongue thrust is less but still there each and every day. His speech apraxia is getting alittle better as well. He finally potty trained at 3 1/2 year old which is a major deal!!

In all things are going well!

Why Is It

That kids learn much better learning in a school enviroment? Damien had no interest in learning signs but now 4 weeks into the school year the kid has come home signing to me after I tried doing ASL here with him at home.

Signs so far:

Hungry
Milk
More
Please

I hope this continues and I can learn more with him. This has been awesome. Much better than the charades we usually have to play to figure out what his needs are.

Quirks

Dominic's teacher sent home a note the other day saying he refuses to use and then gets very upset over the fact that he does not have the same crayons as the other kids in his class so she's supplying him with Crayolas until I can buy him some. According to her, he can see a difference in the color between Roseart and Crayola. I have no clue and he won't tell me. Anyways it's a bit frustrating!

Change Is NOT Good

My life with Dominic could be described as anxious you could say. Every school year the first few weeks I am a worrying mess about if anything is going to trigger him, if a teacher isn't going to understand his needs, etc. Overstimulation is one of the biggest problems we have with Dom and I feel like we are always walking a tight rope.

School has been in session for about 3 weeks now. Dominic has came home upset nearly daily about 2 of those weeks. (sigh) Come to find out there are 2..count them....1....2....Dominic's in his class this year. The teacher informed me before school started that she was going to have to come up with some way to call the boys' name. Well her answer was to call Dominic "D." Yes just the letter D and he's not taking it well at all. He comes home very upset with tears welling up in his eyes (he is super sensitive) screaming or pounding on the table, "I'm not 'D' I'm Dominic!!!!" He talks about the other Dominick in an evil tone clearly despising there is another kid with this name in school. I'm afraid he may just take action and try ridding class of the other Dominick.

I wrote his teacher a note trying to explain he does not adapt well with change which is part of his IEP situation since he's been diagnosised with SID. I asked for her very nicely if she could please try to find another way to call Dominic rather than "D" because it's too much of a change for him and he's really not liking it. She wrote back she noticed that he was pretty upset with it and that she would try to figure something else out. I think the worst part is that the kids in his class have started doing it except for 2 that were in his class last year and he's probably screaming "my name's Dominic, not D!!!!" It's all very upsetting to him.

Hopefully she figures something out because it's little things like this that can really screw up the year. We've had several instances of just the slightest change that will throw him off such as having to move from a blue chair to a red or not sitting on the Dinosaur in circle time anymore. These little things can ruin him for weeks if it's not solved quickly. He's got a Para sitting with him and hopefully she can help him by calling him Dominic since she's dealing only with him (part of his IEP for the ADHD and SID)

Dee Dee!!

Just a quick post. I plan on posting a new video of Damien soon on his speech progress. The past month or so he has been trying to say some new things. It's pretty incredible. I love how Dominic and Alex's eyes get real big when they realize he just said a word! Then they come screaming to me what he said which in turn makes Damien try saying it again. Sometimes we get a word, sometimes we get a spitting tongue thrust. His biggest word right now is dee-dee (baby) He says dee-dee and pats my tummy or lays his head on it. He's quick to say dee-dee in public and point to my belly showing everyone mommy is pregnant. lol

On the 18th he will be starting school leaving here at 7:30 and coming home at noon M-F. I am so hoping with this intense school routine and therapy we will have more words soon. We had a teacher meet and greet this week and come to find out there is some boy who is deaf in class so they will do a LOT of signing. I've worked with him on some signs but hopefully he will learn more and understand that we know what he means with these gestures. Gestures right now is a sound or a charade to let us know what he needs or wants.

Update

We start school in just 16 days and surprisingly I am not too nervous. Dominic will have a Para sitting with him half a day to keep his attention focused on school. Damien will hopefully be learning different ways to speak other than "mamma, dadda, and dis." He seems to really like playing charades and anymore it's how we speak to each other. Heck, any way to get him to communicate what he wants/needs so we don't end up into meltdowns is great.

Being frugal as always, I told the kids the other day they had to use a backpack we already had in the basement. We have about 12 of different characters through the years. Dominic chose to reuse his Transformer bag, Alex a Jansport pink Camo that I picked up at Target last year for $3, and Damien given a choice between Spongebob, Superman, and Thomas chose Spongebob by saying....."ba-bab." I'm sure he saw my eyes get big with a happy smile. I immediately praised him telling him (like I'm supposed to) I love it when you talk and use your words! Since then, no more "ba-bab." But I'm taking it in because he has continued to say "blue" day in and day out.

Dominic has really done awesome this summer. His outbursts have been mild (for the most part), we haven't had too many sensory issues. The biggest thing lately is that his bed wetting has pretty much been solved. We discovered that by picking Dominic up and carrying him to the toilet at 10:30 pm, having him go pee, he stays dry all night. We can both handle doing this task nightly just to keep him dry and away from surgery. I hope that eventually we can wean him of this nightly ritual but for now it's saved me so much laundry.

Overall both are doing really well. I hope to see some improvements when they are throw back into their school routine. This will be Damien's first year of school and he will be going 8-12 M-F! Much different than the 1 hour once a week home visit. He is so excited though when we talk about it though and riding the bus. It'll be harder on me than him I'm sure.

Amazing!

In one week Damien has said 2 new words. "bubble" and "blue" which is more like bwoo.

Here's a list of his words now. He turns 3 in just a few days!

bubble, blue, cheese, mamma, dadda, mom, uh-oh, uh-uh, yes, dis, boo, moo, yay, yeah, please, and peek-a-boo(pee-bo!)

Damien Speech Update

I wish I was posting to identify new sounds or words Damien is making but that's not the case. Since talking to Early Intervention about the speech therapy program the hospital has to offer, a few things came about. They want to try sticking Damien with a different SLP at the center for 1 hour a week. This will be from 9-10 AM. After that at 10 am he has speech playgroup with Linda (his first SLP) and other kids till 10:45 am. I want to be positive that having nearly 2 hours of speech therapy a week is going to help some but I know it's probably not. We all realize that with Apraxia, no matter what, it takes some serious time to get the mouth a going.

I still am interested in getting him in the hospital program just because it's also 1 on 1 and extensive therapy. The problem is towing all the kids around twice a week, keeping them busy for 45 minutes, etc. I think I'll get burnt out. I think I'm already burnt out as it is but I know eventually he will talk, whether with words, sign language, gestures. I can get some gestures out of him (finger on mouth making mmm.. sound for more) but most of the time he will bring whatever he wants or needs to me to figure out what he's wanting. For example if he wants a drink he'll bring me a cup.

Here's a video from the other day of him telling me exactly how he feels about giving up his bed to Mia so the new baby can sleep in the crib. He thinks Mia should stay in the crib. This is the gesture speech I am also talking about. He does say yes, no, mamma, lots of tongue thrust and spitting. Usually active speech where he is excited or mad there is lots of spitting and tongue thrust.

Ready To Fight....I Guess

Since both boys have had speech issues, I've heard for awhile that I should contact our local hospital to get them in their intensive speech therapy program. This summer Damien will have playgroup once a week for 1 hour, no real speech services though except through play. Most of the people I talk to say that their insurance has paid for the hospital program. I called Blue Cross Blue Shield and asked if we had coverage on our plan for this and she told me it's a gray area. Great. She basically told me that I needed to jump hoops for BCBS before they will agree to cover speech. They definitely do not cover articulation which I can understand that but she thinks with enough paperwork they would approve us for therapy. So I called the hospital to ask what they thought of my situation. I told the woman Damien has Speech Apraxia, tongue thrust, and a constant slobber. She is 100% positive they will have to cover therapy for him. He'd have two 30 minute sessions a week. I am so worried with no REAL services focusing on speech for 3 months he's going to fall further behind. He'll be 3 in just a month and a half and still speaks at a 9-12 month level. Mia saying Bailey now clear as day and Damien saying "dis!" to everything is just heartbreaking day after day after day.

Crazy Talk

Dominic scares me sometimes. He came up to me today with obvious bite marks on his wrists and hands. He said "take them off." I asked, "what your hands??" He replied, "yes, I don't want them on anymore." I told him we need hands to grab things so we need to keep them on. He starts trying to pull off his hand and says, "I want them off. I want to see my bones. Take them off so I can see my bones!!"

Now I would worry too much but I always catch him obsessively doing things. I catch him all the time biting his toenails off and well the other day he had bit one down to where it had began to bleed because it was so short. Anyways- hopefully he'll stop and I won't have to take him in to the Dr with weird bite marks on himself and then have to explain it all to his Ped at his Kinder shot appt in 2 weeks.

Ohhhhh.....not good.

Damien is nearing 3 now so he can really understand most things like...... how to get under his brother skin. When playing with his stim box (mouth helpers as I call them) the other day, he pulled out one of the whistles he likes that is a bit on the loud side. He took it straight over by Dominic and began blowing as hard as he could. Poor Dom jumped about a foot in the air followed by screams and grabbing his ears yelling for him to stop. Since Damien understands that Dom can't handle loud sounds he continued to toot it and run around the front room in circles. I finally ended up taking the stupid thing away and putting it in time out.

Poor Kid

Today is Kindergarten Round up! Thing is we won't be going. Dominic puked a few times Saturday morning and then Monday morning before the bus came he came down with the Hershey Squirts. It was a very long morning of him running to the toilet. Thought he'd be ok to go today but again right before the bus came he said, "uh oh, mommy I think I pooped my pants!" So sure enough his tummy is still not good. I went out again and told the bus he wouldn't be going.

So sadly he'll miss out on seeing his future classmates and the classroom visit they are doing but good thing is he already goes to the school for preschool, we know his teacher and I can get him in for alittle tour of the classroom later.

"Pee Boo!"

Damien has really opened up to playing Peek-a-boo with us all. He can actually think to say it now when he puts his hands to eyes. Other times though he just puts his hands to his eyes and laughs.

Dry For One Whole Week!

Dominic has been completely dry in the morning for a whole week. This is the first time this has ever happened and he's 5 yrs 2 months. We've been told for years that because of his severe snoring he's not getting a good nights rest and we needed to take his tonsils and adnoids out so he could wake himself to go. It's always been a complete surprise to Dominic when he has woke up wet. He has no idea. We started using cloth pull ups that look like underwear (Bummis) because he was to that age where peeing the bed is kind of embarrassing for him.

We've told him if he continues to do so well, we will go to Target (his favorite store) and he can find a new bionicle. He's excited so every morning he wakes, checks himself and screams, "mommy! I didn't pee the bed!!! I get Bionicle now??"

Dominic's Re-Eval for his IEP

First off I was really impressed how the meeting went. A bit overwhelming but I made it through. A summary to all this below is Dominic will have a Para working with him daily 2.5 hrs in the morning. He will not be taken out of class for special ed services which is AWESOME so he will be just like the other kids (except for the para)

Dave and I were there along with the following staff.

• Mr. George Principal of Elementary school
• Mrs. K- Dominic's current teacher
• Kris- Dom's EI Special Ed teacher who comes to work with him
• Lena- School Psychologist for Elementary school
• Susie- EI Speech Pathologist
• Barb- the Elementary Special Ed Teacher
• Mrs. B- Dominic's assigned Kindergarten Teacher
• Susan- Elementary Speech Pathologist
• (missing) Robbie- Occupational Therapist

As far as academic achievement and performance, they found that he is still cognitively delayed and will need some help to keep up with his peers. On Communication he is at a 55 mth level (he's 63 months old) for expressive language. He is at 50 mth level for Receptive. So basically he communicates awesome now but when you ask him to do something he doesn't quite understand. He made some improvements on completing tasks but still not up to par. Because of this he has a hard time following directions and answering questions in a classroom.

Socially he has improved quite a bit but is still delayed. He needs to learn to share, follow rules, play with peers. They described him quite abit as a loner which makes me sad. Here is what exactly is wrote on his IEP from the teacher's standpoint.

Dominic s active in the classroom often touching other students, getting in their space, or moving around in his set. His attention to task varies. Sometimes he is very engaged in the activity while other times he is completely turned around looking away from the source of instruction. he has difficulty understanding personal boundaries as well as classroom expectations At times it appears as though he acts on impulse without realizing he is breaking a class rule, such as when he takes objects out of the center areas around the classroom. It doesn't appear as though he is doing this deliberately to be defiant but rather he is playing and just wrapped up in what he is doing. There are tims when he is defiant and resists adult instruction especially when it is a table time activity that is little interest to him.

When he was 4, his EI teacher had me have him tested for ADHD which he scored borderline ADHD/more oppositional. I don't believe she ever put it in his folder though. It seemed to me they were trying not to just slap the title on him so I went ahead and told them that we expected this as he had been tested for ADHD and did score that he did indeed have ADHD but we chose not to medicate.

The Sensory Processing testing we did a few months back did identify him as a SID child/student (THANK THE LORD!! ANSWERS! OMG!) Just hearing that finally made me just about start crying right there at the table as they read it. I had my head looking down just shaking my head in agreement. Based on classroom observation by EI, testing his Teacher and I both took they will be giving him OT to work with this and fine motor skills since he still can't hold a pencil right.

So here's his accommodations this year

• classroom visual schedule
• seating close to teacher
• removing extra materials from work area
• clear explanation of behavior explained in a way he can understand
• prepare for changes n chdule but maintain consistet schedule as much as possible
• allow additional time for responding to tasks
• demonstrate activities or directions that need to be completed
• frequent prompting and redirection
• small group instruction as much as possible
• frequent repetition of new concepts
• use of visual cues and hands on learning
• teacher will use behavioral charts for rewarding
• Special ed teacher will check in twice a month for updates

On District and State Assessment testing he will be given additional time, a small group environment, demonstration o directions, and use of visual cues as allowed.

We made a Behavior Intervention Plan with strategies, consequences, and crisis management (lets hope that never is needed!) Dominic has always had a very hard time controlling anger. At Early Intervention, he hit, kicked, screamed, slapped teachers and bus drivers. They would have to restrain him, rock him, put him in a quiet place to settle down. Now he hasn't been hitting much but he won't move to where he needs to go, runs away, screams, cries, etc.

So anyways that is a summary of the meeting. In all it was a hour and a half long! We had a book of papers to take home and go through. It went very well though, I'm pleased, alittle worried about no summer services but we'll try homeschooling as much as possible this summer to see if we can keep him on task and caught up.

Today Is The Day

Dominic's IEP review is today. Why is today's meeting any different than the last 2 year reviews? Well, this is the big one. Transitioning him to Kindergarten. Dave is coming with me so we will see how this goes down. The School Psychologist, School Speech Path, Kindergarten teachers, and Special Ed Teacher and of course Kris his Special Ed teacher from EI will be there. This will be the most overwhelming meeting I've had to endure so far. I know only good will come of it but it's where we have 1 agency letting us go and now we'll deal directly with the School District with Dominic. To me it's scary but maybe I'm scared of nothing, I don't know. lol I still have no clue what his review scores have been except that social did not change at all from the previous year. Wish us luck.

Mad as HELL!!!

I am so mad right now at Dominic's School. Tell me what you think we should do. Ok so Dominic is in Head Start, not because of income, but because of the fact he is at risk and on an IEP through Early Intervention due to his delays. I was not happy that he would be in Head Start in the first place because of how ANAL they are, BUT unless I wanted him shipped to a different town to school (same district) because of the IEP, he had to go there and I wanted him at the same school as his sister.

So here's the deal. First, the Stupid moronic women running the program know nothing about special needs. I should have found out more before deciding to pull him out of Early Intervention. If he gags, throws up, it's stomach flu and they send him home. He has Sensory Intergration Disorder so certain foods, smells, etc will send his senses into overdrive. So we started having phone calls at lunch saying he would gag looking at the food or when he tried eating it. I told them about this at the beginning of the year he had this and he might do these things. Well they started asking me to pick him up a few times because they didn't want to take a chance he might puke on the bus BUT they also said he would have to stay home the next day. Most days he never touched his food and would just look around the lunch room which was one of the reasons they had also called. Finally I said, look. I'll pack lunches for him, things I know he can eat, he likes and won't get sick on. For about a month we've been fine. Till yesterday.

I get a note saying this
my nutrition coordinator at Head Start, ------, asked me to request a doctors note from you about bringing his own lunch. She said due to the lunch program that head start uses, they will require a note of explanation. If you have any questions about this you can call.......

I pack him healthy lunches, not crap. Believe me since I used to do daycare i should know what's healthy!! Should I just let him starve to death? Sit at school at eat nothing and ride the bus home for a hour? This is another stupid hoop they want me to jump through and I'm freakin tired of it. So this time my dh is calling the nutrition coordinator. Early Intervention has also said because of the SID incidents in the past to call them if we needed help with anything so I may be calling them today to about this.

I will never put my kids in some stupid state funded program again. If you have a child on an IEP and they offer a spot in Head Start, DON'T DO IT!!! They call me all the time about this and that. They need proof of this, they need to talk to me about that or I'm breaking some stupid rule. I told Early Intervention I made a huge mistake trying to put him at the school he'll be in Kindergarten at next year and Damien will be there at the EI center ALL of his preschool years because I am not dealing with this again.

Worst part is now I have this IEP meeting with the principal, Headstart teachers, EI special ed teacher, and the Kinder teachers trying to figure out who's class he gets next year. I am already stressed out completely about it and having the Headstart teachers in there I may just explode and say GET OUT because I don't want to deal with them anymore. I just want May to come and to deal with the school district from then on out NOT Headstart.

Oh and before I noticed this note, I packed Dom a PBJ, Strawberries, Apple Juice, Gogurt. I was NOT going to take that away from him so I sent it. He saw me pack it. If they don't allow him to eat it I will be PEEVED!! He will not eat Chicken Noodles over mashed potatoes.

Jordan

My cousin Jordan is severely autistic. Ever since having my own set of problems with Dominic my aunt has always been there if I had any questions, especially when finding out some of the "traits" he has had. Dominic however is nothing like Jordan.

Jordan is 17 now. My Aunt's son but my Grandmother's baby. She puts on his socks and shoes, fixes his hair, she takes him to the park to play. He gets excited being with kids, flapping his arms and hopping in place. When he was a baby he seemed pretty normal except for a rather large head which runs in the family. However by the time he was 1 ish, it was apparent there were other things going on. He would space out, not talk or notice you were there. As he grew older, his behavior, ticks, flapping, etc were so extremely hard on them both that it was enough that my Aunt and Uncle decided that Jordan would be an only child because he would require so much work. He was enrolled in Early Intervention by the time he was 2 and started meds by the time he was 4. When my uncle would come to family events with my aunt and Jordan the visit would always be short. I felt terrible for my uncle, you could tell he was always embarrassed by his behavior where ever they were to go. I remember when my uncle moved to a new home about 6 yrs ago, it just so happened the boy next door was special needs as well and he and Jordan hit it off becoming great friends the first day they moved in! We were all thrilled watching them. That was Jordan's first "real" friend.

Jordan is doing so well now. Almost ready to graduate, participating in the Special Olympics. His parents have come so far in the past 17 years. So scared, overwhelmed with him as a child to wow, what a blessing he is.

IEP Review Appointments

Dominic- April 10th

Damien- April 30th

Why oh why do I always get so nervous for these??? Ugh.