Raising Eli & Zachary

My wife and I have been thinking about getting Eli a Apple iTouch for the holidays. He is always playing Tiny Towers, Angry Birds or Words with Friends on our phones and tablets that it is getting a little annoying. The problem is simple, he is not the most responsible kid on the planet and like most kids his age would simply fling the device on the table or floor when something else catches his eye. In other words, is six years old to young to have such an expensive “toy”.

Eli is extremely smart, even with his development issues. He loves music, sings all the time (He loves Brittney Spears, Adele, Lady GaGa etc) and we enjoy the fact that part of his education is via music. So having an iTouch is a natural progression of him having his own identity, his own music, his own apps etc. I want him to have it, although I don’t want it to overwhelm him. As most of you know any child who has developmental issues such as being on the spectrum of Autism can result in objects becoming a crutch and a mandatory part of the childs existence. Eli loves to make up games associated with the toy of the day, so in this case he loves to lay in bed and ask me ” Dad…what is on the fourteenth floor in Tiny Towers. The abbreviation is IA. I am supposed to guess Izzy Apartments and god forbid I get it wrong (his photographic memory allows him to remember what floor is what, what product is being sold etc).

Half the fun for me is changing the colors of the floors in the Tiny Towers game to see if he notices, which of course he does. Today we had a Tiny Towers blip where I lost a few floors, plenty of people, money and gold coins. Enough to throw Eli for a loop, a temper tantrum an a possible meltdown. Although they are becoming few and far between, his addiction to this game is going to result in an issue with the blip. I wrote support for the game telling them what happened but I am not sure they will respond in time.

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Eli’s diagnosis and EIP was removed midway through Kindergarten, but issues still remain. The school system believes Eli is fine because his disability does not negatively affect his abilities as a student in school. Now that Eli is in first grade he is doing a fantastic job but the stim and social issues continue. Clearly Eli still needs help so we are about to take on the school district and try to get him additional help that was stripped from him going into first grade.

Our goal is to have him tested again to see if he is classified with Aspergers Syndrome. Eli fits the bill with all the classic symptoms and he is now old enough for that diagnosis (six is the earliest a child can be diagnosed accurately with Asbergers). Our goal is if there is help he can receive, then we want that help. It is all about his future. We want the best for him.

I will let you know what happens.

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Eli is a magical kid. To sum it up he is very polite, very nice to others and is exceptionally smart. Yesterday we received a letter home from school asking if we could bring Eli down to the PTA meeting because he was selected to say the pledge at the start of the meeting. When the principal of the school called him up (as well as a student from 2nd, 3rd, 4th and 5th grade) he said that these kids were already excelling in class and had shown that they were going to be stars.

Nice job my boy. When his teacher approached me and said that academically he is amazing I beamed a huge smile. All the nights of reading stories, playing games like guess the planet, talking about science, math and nature. It all pays off. Eli is a sponge and absorbs almost everything he hears and sees. It is really rewarding.

As for the now declassified PDD-NOS the teacher says she has stopped him from stimming with his hands twice, that socially he has no issues and that he is doing great. We were worried that without services and structure that he would end up taking steps backwards. It is entirely to early to tell if this is going to be the case but so far so good.

As for Zachary – who is equally amazing, he has his first virus since going back to daycare. Unreal. Jodi is taking the day off. This kid has no immune system.

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Eli and I were rough housing on the sofa and I asked him to stop and go potty and brush his teeth. Of course he argued and tried to make some kid threats of never playing with me again and I told him that I was ok with it. He stomped off, went into the bathroom and closed the door (he never closes the door), and then he locked it (bad choice…we have rules against that). So I stood outside the door listening thinking he was going to be devious and not actually brush his teeth.

He mumbled about how I was mean and then went potty and brushed his teeth. Because the door was closed and locked I took the stance of a scary monster and waited for the door to be unlocked and opened and then I scared the living shit out of him. He screamed, did a funky crazy I am scared as can be dance and then started yelling at me. I turned around and ran laughing! He chased me and then sat me down and lectured me for five minutes about how he didn’t like that I scared him, it was not nice and he didn’t want me to do it again.

I of course took the lecture well and laughed internally wishing I had caught it on tape. The good thing, is that he communicated his feelings to me in a proper manner. He has come so far since being diagnosed and declassified. His maturity level over the last few months is amazing. Six going on 12.

(1 votes, average: 4.00 out of 5)

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Where are all the PDD-NOS parents? I invite you to reach out to me. I am not a doctor, not a scientist, but I am a parent of a PDD NOS child who has received services and has watched their child bloom and fight through the disorder to be declassified. My son Eli plays sports, he excels in school, socializes beautifully and communicates with his peers, his teachers and adults. I am no expert, but I can answer your questions and help you come to terms with the disorder. I invite you to post questions, post comments, call me on the phone or email me.

PDD-NOS parents need to get as much help as the do the kids. Get over the denial phase and seek help. It will change your life!

(3 votes, average: 4.67 out of 5)

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Ok well superstar is a bit premature but heck a few years ago I always wondered if Eli would ever be able to participate in a team sport. We were encouraged to get Eli involved in an individual sport so we enrolled him in swimming (which has done a great job with) but soon Eli started asking about soccer and baseball.

Enrolling him in T-ball is just another lesson for parents with children who are on the spectrum. Although Eli has been declassified it was still a worry for us, but as always Eli has jumped at the chance and shown that he is more than capapble of holding his own socially, physically and mentally with all the other kids. In fact, Eli has been more social (I credit Ralph – his SEIT) and Eli’s own desire to have fun and enjoy himself.

So T-Ball started and Eli is doing great. He hits the ball well, catches the ball and can run the bases. You have to see him smile when he plays and it really makes me proud. Today we have a practice where the coaches (of which I am one) will try to get the kids to actually not run from center field to the pitchers mound each time the ball is hit. I equate it to bumblebee soccer. They all just want to be part of the game.

I have to download some pictures and post them. Too funny!

The lesson in this is simple: Never under estimate your child when it comes to social activities and sports. They might just surprise you and you never know if it can be the trigger they need socially.

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I write this with extremely mixed emotions. Part pride, part fear and a lot of tears. Eli has been declassified and is no longer considered PDD-NOS. The experts have been saying for quite some time that Eli was heading for this and I have known that with his academic test scores and IQ being so high that we would soon face this day. Well it has come and Eli has lost his classification and now faces his future without additional support. Does this mean he has been cured of his problem? No.

The problem with standardized testing for PDD-NOS and the entire Autism spectrum is that they count academics and the ability for the child to learn as the measuring stick. If the child is learning, and excelling then the handicap is not slowing them down and hence they are cured. Eli still faces a lot of social hurdles but I believe, let me rephrase. I pray that being around kids that are socially active and capable will teach him how to be more socially active and capable. My belief is that if you put a child in a room full of drug dealers, eventually he will become a drug dealer. The same holds true for kids on the spectrum. If you put a bunch of kids on the spectrum together, how do they learn more appropriate behaviors? Since learning social skills is something you get from experience, if you are experiencing bad social skills then how do you learn proper ones.

I think it is a blessing that we have come this far. I credit the people who have worked with him. Ralph Barone as his SEIT, the OT and Speech therapists working on his social skills, his teachers and his family and friends. Eli has evolved so much in the 3.5 years of services he received. I think it is time that money go to another child. Maybe the dollars spent will turn that child around and give him or her the opportunities in life that Eli now has.

I am worried for Eli, but I celebrate all that he has become and know I have to push him harder now to keep on track. Congrats my son…job well done! We always knew you had it in you and I am very proud of you. But if you continue to mouth off, be put on the yellow for socially misbehaving I will silently be thrilled, but I will punish you my little stinker head.

(2 votes, average: 5.00 out of 5)

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I received an email from a parent today regarding PDD-NOS that explained how her child was 4 years old and still not having full conversations. She wanted to know when Eli first starting having conversations.

This is an excellent question and not as easy of one to answer. Eli was diagnosed with PDD-NOS at an early age (1.5) and he has been receiving services ever since. Having verbal conversations using full sentences is a skill that is usually achieved between 18 and 24 months. But you have to define what is really meant by speaking in a full sentence. Is “Mommy…juice” a full sentence or is “Mommy can I have some juice” a full sentence? Also you have to understand the nature of the conversation and who is involved. Is this between mom and child or is this between child and friend.

I don’t recall when Eli started talking in full sentences. I do know that his speech was delayed and we were receiving (and still are) receiving speech therapy but more for appropriate speech in terms of social skills when interacting with other kids. I think Eli was speaking in sentences around 24-30 months but really began to speak and express himself a little later than that. As with PDD-NOS, each child struggles with different areas of development.

My only suggestion is to make sure that the speech therapy is maxed out through your early intervention program. If your child is having issues with speech, they should be getting as much therapy as possible. Having a great Special Education Intervention Teacher (thanks Ralph Barone) was a miracle for Eli. If you feel the problem is not getting better, maybe it is time to get more help or different help. Maybe an integrated class or a dedicated school is more appropriate. Either way asking for more help, actually let me rephrase. Demanding and fighting for more services is a right. Sometimes you have to scream and cry to get it but your child is worth it.

Good luck!

Bernard

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There are good days and bad days being a parent of a child who has PDD-NOS. Eli is a very bright boy, totally destroying the academic charts away at school in reading, math, science and social studies. But where the bad days are consist of the battle for him to be successful in social situations. Just the other day he had a play date with a friend from his last school and according to my wife did an awesome job playing and talking with his friend. Yet last night he had a sleep over with his cousin and Eli was just flat rude.

Of course it is easy to blame it on him being tired, but socially Eli has always been behind in his development. The PDD-NOS for my child stands for NOT OVERLY SOCIAL! It was a battle of demands and one sided desire filled with arguing and crying. In short, my boy didn’t understand how to be a good host and I am sure it made for a miserable night for his cousin. We have always expressed and pushed that Eli needed to use his words to express himself (something he would never do), and now if what you are saying does not sit well with him he tells you that he is not happy with what you are saying or doing. Most of the time it is completely appropriate that he might feel that way, but sometimes you just have to suck it up and go with the flow. If his cousin wanted to play a different game, Eli was very vocal about it, to the point of being a little snot. If his cousin wanted to try something Eli was doing it was met with refusal and then crying if we pushed the subject.

For all the headway Eli has made conquering the issues stemming from the development delay he has so much work still left to do. It will be a lifelong battle and we know he will be successful in life, but sometimes I wish things would progress a bit faster for him. He is such a loving and good child and I want him to have friends and relationships as he grows older. I know he is only five and still learning, just wish that he could conquer this while he was still young.

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