Raising Eli & Zachary

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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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 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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A flood of emotions hit me hard while watching Eli graduate Pre-K this week. Two years ago when Eli was diagnosed with PDD NOS I felt like it was a death sentence. I can’t begin to say how I felt that he would grow up disadvantaged and face a lifetime of hardship. Now, with the efforts of his team, especially Ralph he has blossomed into a kid who can get up on stage, sing songs and do the proper hand gestures and most importantly, have a fun time and be social with his peers.

It is sometimes hard to watch your child grow up and mature. There are times when I look at him and see him as a baby, and other times when I view him as my little man. I am so proud of what has achieved. Ralph said something to me as I was hugging him and crying thank you during the ceremony. He said Eli had it within him all of the time. He was right, but it took a special person to bring it out of him. I can’t say enough about what Ralph has provided Eli. He changed his future, he opened it up.

If you are ever in need of professional services for your autistic child, whether the diagnosis is PDD NOS or Autism and you need the best Special Education Intervention Teacher, give me a call. I know who to recommend. Thanks Ralph, thanks for everything you have done and continue to do. You should feel proud of what you helped Eli conquer.

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My son, who is now attending two schools during the day, for the first half he attends NIS, and the second half he is bused to Tutor Time, has told me every morning this week that he likes the old school (Tutor Time) better.

This concerns me and makes me sad. The entire reason Eli is going to NIS is to get better one on one help in an environment that is better suited to help with the PDD NOS diagnosis.

Now I am finding that I am not getting the type of communication I am used to back from the teacher, and in her last note informing my wife that she, with 18 kids, does not have the time to communicate effectively with us.

I hope we didn’t make a mistake, and I hope that after our first parent teacher conference we have some grounds to setting up a real communication plan, if not, we are going to have to find another teacher or get him out of this school.

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It is hard to believe that Eli was diagnosed with PDD NOS almost two years ago. If you are a parent, and you are worried about the development of your child (socially or physically) you should listen to what I have to say. It is easy to reject such a notion, and deny it could be happening to your child, because everyone believes and is is blinded to the fact that their child could be “different”, but as soon as you accept it, the sooner you can correct it. When I say correct it, I mean it. Eli, since receiving therapy for his issues, is a completely different child now, and I can’t say enough to the therapist who worked with him. They have been a miracle.

Yesterday I had the luxury of taking Eli to his new school orientation. It is a school mixed with “on the spectrum children” and “non-spectrum children”. I used to use the words “normal” and “abnormal” but I soon realized that all children are normal, even if they are autistic or have the milder diagnosis of PDD NOS. Eli is a wonderful little boy, polite, smarter than 90% of the kids around him, has a true photographic memory, but he had his social issues, stimming to help him in awkward situations and some OT issues like holding a crayon the correct way and using a spoon and fork. His development used to be about six months slower than his peers in these trouble areas, and now, he is so far more advanced than his peers in the same areas for his age group. He competes, and wins in all areas against people his own age and older. That my friends, is amazing. If you put Eli up in a lineup of 10 kids, all around his age, he would shine above them. The difference is amazing.

Yet he still has his issues, like many sensory things like splashing in water that he is uncomfortable, riding bikes, trying some “scary” things that other kids would just rush into. For example, he still won’t ride his bike, because he is scared. He still would rather play inside than outside, although yesterday all he wanted to do is be outside in the hot humid air. Go figure!

The best part is my change in attitude, I used to be embarrased and shamed that my son was PDD NOS as if it was a brand of retardation or autism. I rejected the diagnosis and even though I did the right thing by getting him help, I always wondered if he would have just outgrown it. Now I embrace it, and I use it towards his advantage. He gets the help he needs, and we see the reward of him being a fully capable young lad. When I tell people he is PDD NOS they are shocked, and then I am proud that I did the right thing, and even happier that I was able to swallow my pride and get him help.

Eli is amazing, not because he is PDD NOS, but because he has the wonderful personality every parent dreams about. He is kind to others, socially capable, physically on top of his game and smarter than a whip. He is compassionate towards others and a good friend. As a parent, I could not be more proud of his achievements and we all look forward to him being a great big brother in six weeks.

If you child is showings any signs of autism, even gentle signs that you think he/she will grow out of, then get him/her evaluated. It is free. If they need help, the help is free, and trust me when I say the therapy works and will make a difference in the long term success of your child. TRUST ME, ignoring the issue until they are in Kindergarten is the worst thing you can do, it is hard to fix problems in that setting. Early intervention is the key to success.

If you need help, or have questions. Feel free to reach out to my wife and I. We would be happy to talk to you about it. I can be reached at bernardhny@gmail.com and will be happy to send you my phone number so we can chat.

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