Worry about Benjamin

It has been a stressful couple of months, especially with concern about our little Batman Benjamin.



We have been taking Benjamin to speech therapy since May. Over the summer, his therapist mentioned that she would like to refer him to Children's Hospital for an autism evaluation as he was doing some things that children diagnosed with autism do---spinning chairs and looking at them out of the corner of his eye for an extended period of time, not being very sociable, having a very hard time with transition. I agreed and we had that evaluation done. The doctor that did that evaluation said that it was her opinion that Benjamin was not on the spectrum but that there was definitely something else that was causing some delays. She referred us to the main hospital to have a 2 hour developmental evaluation done. We had that done at the end of September.

On Friday, October 24 we took Benjamin back to the doctor to see what the results of that 2 hour evaluation showed.



Her official diagnosis is that Benjamin has a Global Developmental Delay, and has Autism Spectrum Disorder with associated language impairment, requiring very substantial support.

To say that we are shocked is an understatement. I have a nephew who is on the extreme side of the spectrum (non verbal, violent, has to wear a helmet, has a feeding tube, etc.) and to put him and Benjamin under the same diagnoses is disheartening and feels unreal. The doctor said that 3 years ago she would not have put that label on Benjamin, however they have lumped a lot of developmental disorders under the autism umbrella. She seemed to imply that with intensive therapy that we should be able to get Benjamin to a place where he could transition into a normal classroom with no issues when he is ready for school. She did give us the option of waiting a few months and having Benjamin tested again, as he was showing some things in our meeting that he was not showing in the evaluation a month before--like eye contact, pretend playing, etc. But if she came to the same diagnoses then, then we would have lost 6 months of treatment time. So we decided to accept the diagnosis and go from there.

So we are in the midst of trying to figure out what steps to take next and what this means for us. I have ordered a couple of the books that the doctor recommended and we have been in contact with "Help Me Grow" through the state of Ohio to see if they can provide the therapies that Benjamin is going to need. They said it could be around a month before we have anything in place to help Benjamin. In the meantime, I will continue to take him to his speech therapy once a week and will try to work with him at home.

I will say that it is overwhelming to think about. I have eaten so much chocolate in the past couple weeks that it is not right. I am scared for the future, but at the same time I am glad that we might finally be able to get Benjamin the help that is needed. It is so hard, but we will do what we need to do to help Benjamin succeed.

Comments

  1. Just remember it's a spectrum and your nephew is at one end of the spectrum and Benjamin is at the other end. The range is very very wide and at Benjamin's end the characteristics can be quite mild, hardly even noticeable!

    Just look at what you've written under Benjamin's picture in your sidebar: The youngest family member who is a definite mama's boy and a joy to be around! He is also know as "Mr. Independent." Getting a handle on the therapies and needs is overwhelming right now and understandably so but with two great parents I know you'll get it sorted to his advantage. Hopefully the funding works out for you. Hang in there Rachel!!

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  2. After Jane's fabulous reply, there's not much I can add, but keep the faith!! It'll be ok! ((hugs))

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  3. Be sure to contact the public school's special education dept and determine what if anything, they will provide/pay for. Good luck!

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  4. My brother has autism and it is important to remember that there is a spectrum. My brother reads and writes and attended mainstreamed classrooms throughout his school life and even attended a college simulation program. He works and is very very happy. There are so many resources now. But Jane is right; Benjamin has 2 great parents and is a joy. It sounds super overwhelming and it is, but you are more than capable. Thinking of you, prayers for you!

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  5. Just joining with the rest of the ladies!!! Hang in there, mama!! Lots of hugs to you!

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