Hello my name is Michelle, 33 years old. I graduated from SDSU in 2007 with a BS in psychology and child development. I worked for a non profit organization for almost 10 years providing case management for children with developmental disabilities. I was responsible for connecting families with appropriate intervention services (ABA, OT, PT, speech therapy, etc) and resources such as free and/or affordable day care. I also provided counseling for the parents during their children's initial diagnosis and guided them through the grieving procees (denial, anger, acceptance). I knew so much....until I myself became a parent of a child with special needs. My daughter is 4 years old and was diagnosed with ADHD on December 2017. Despite my educational and professional experience, I am just a parent, struggling with the diagnosis and the daily life of having a child with special needs. I think people (my family and friends) forget that, they just view me as the expert who will handle/fix everything and it sets unrealistic expectations for me.
Anyway, I am here, just a parent, hoping to make friends, to learn from each other's experiences. I do have a lot to share, but i also have a lot to learn, so do ask and do tell.
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mlarios03
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Welcome to the site! I felt so alone when my son started his journey over a year ago. Once I came here, I finally realized I wasn't alone. Good luck with everything.
He will be 7 in June, has had 2 tours of duty in kindergarten, is in special ed w/ the 504/BIP/IEP and on meds. We will begin testing him for dyslexia and all the other "dys" categories after he turns 7. Being that I have ADHD I could tell something was different when he was about to turn 5. So, I logged everything and kept any and all notes from pre-k for 6 months. I mean I did everything....diet and all before meds. He started meds a week before kinder (the 2nd tour) and I couldn't believe it was the same child. But, of course it couldn't be that easy. We had him on the rapid release meds and before the holidays he started taking steps backwards. We just started the extended release 2 weeks ago and it's like we are at square one again.
It's an ongoing battle (as I'm sure you're aware) but my hubs and I are deeply involved and will continue to give him the support and encouragement he needs. I had to take a year off from working (Meeting/Event Planner) just to keep up w/ all of the appointments and all that entails. So, there you have it. Sorry, I'm sure that's more than you wanted to know! LOL!!
You were so proactive documenting everything! Good! I haven't started with meds yet, im a little scared. You mentioned a diet before the meds, is that the gluten free diet? Im attending a CHADD training about food and focus later this month.
I too just quit my job on 3/2/18 for the same reason.
And no, its not too much, thank you. It makes the journey less lonely. Plus the encouraging words I receive here compensate for the unsupportive comments that friends and family make.
I do agree with you. It is always easier being an outsider then it is to be to the person who is dealing with the issue. Sometimes life passes you by so fast you have to slow down to realize what is going on. My son who is six was just diagnosed with ADHD. I knew since he was three that he showed signs, but wanted to attribute it to him being the youngest child and not being put in social situations. Each year in school his behavior has become worse. We finally completed his evaluation and are in the process of getting him help in school. My husband still thinks that it is just a phase. I on the other hand am trying to educate myself so I can make decisions for myself as well as my son that are going to help in the future.
I like reading other parents suggestions and stories. It provides me with me insight and encouragement. It is good to know that others have the same struggles that I have and are just looking for someone to listen to them. I would love information or anything that would help. I live in Illinois, but you may be able to provide me with information that I could use that would help me find support groups or services.
I noticed that he had a hard time taking direction. He did Not like authority and would often defy his teachers. Unlike my other children he did not do good in group settings. He is fine 1 to 1 and with more direction, unfortunately when kids go to school they do not get as much 1 to 1. I would recommend doing legos, reading, blocks and puzzles. Our biggest mistake was allowing him to play to much on his tablet and TV watching. Sometimes it's easier due to our schedules, but the doctor says video games have to much going on and stimulate the mind to always look at different things. So a child with ADHD who has a harder time focusing will have a harder time because they want to be constantly stimulated. I hope this helps
I guess i noticed it much earlier than age 3. She started ealry intervention s with the San Diego Regional Center Early Start program, since she was a late walker and talker. They provided free weekly hour sessions of PT, OT, speech, and a teacher at the home. Both the teacher and speech therapists would tell me how difficult she was. Then she started preschool at 18 months. Again her teachers would complain that she did not participate in circle time. I would get defensive, she is only a baby compared to the other kids in the room. And then I started to see sensory issues, which are typically signs of autism. She walked with her head tilted, flapped hands when excited, mouthed inedible items, ran back and forth and spinned in circles. At 18 months the regional center completed an Autism screening, and I got a second opinion through my private insurance, kaiser. Both psychologists said she was ok but to come back. I returned on her 3rd birthday, as she was still displaying same issues. At that time, they wrote at risk for ADHD, and I hate to admit it, but I did not do anything about it. It's not until now, that she is 4 and officially diagnosed that im starting to do something.
Glad that at least now you have the diagnosis and can access support for him. Did the school complete the IEP or 504 already? My daughter has an IEP with the school district but its only for language delay, so she's only receiving speech therapy. I am requesting additional evaluations to see what other services she can quailify for, I'm hoping a special education class.
She does attend full time preschool with Head Start. Head Start is a national service that provides preschool for qualifying children 18 months to 5 years age.
Through our private insurance we are receiving OT to address sensory issues. I have learned so many tips just in these last few months: for examples chewlery, vibrating toothbrush, crunchy foods weighted jacket.
We are also requesting behavior therapy through our private insurance, not sure if that will be ABA, since our appointment is until next month. I recommend ABA to help deal with behavioral issues.
First 5 CA also provides free interventions services including behavior for children under age 5.
I'm doing a lot of reading/research. My reading list: "how to talk so kids will listen and listen so kids will talk" by Adele Faber & Elaine Mazlish, "the incredible years: a trouble-shooting guide for parents of children aged 2-8 years" by Carolyn Webster-Stratton, PhD, "Rewars for kids! Ready to use charts & activities for positive parenting" by Virginia M. Shiller, PhD. and "the kid friendly ADHD & Autism cookbook: the ultimate guide to the gluten-free, casein-free diet" by Pamela J. Compart, MD and Dana Laake.
I completed a Positive Parenting Program for free through the Jewish Family Service, an organization in San Diego, CA.
I also signed up for CHADD, and there offer monthly meetings. Plus the website, has a lot of tips and resources, including a pdf called "tips to improve early morning functioning: a guide for parents and caregivers of young children with ADHD". I purchased the entire emodule series for $200 but you have the option of buying individual presentations.
One random life tip I discovered is the disability access pass at theme parks for children with ADHD, for front of the line access. It has made my outings with my daughter more pleasurable. Ohh and speaking of outings, real id bracelet and back pack leash are a must with her. She enjoys getting lost (runs away and hides).
I hope that kinda helps, most of my resources are for San Diego, CA
I started checking in to private and specialized schools in our area (Dallas) but they seem to start out at $15k or more. A parent from our local ADHD group mentioned online schooling. I found one that is extremely impressive, the Christa McAuliffe Academy (CMASAS.org). I met w/ one of their counselors and got the virtual tour with all of the logistical/curriculum info. I left that call with lots of emotion...mainly because their program is 100% designed for kids like ours. It's a legitimately accredited school for K-12. And, the credits are transferable if you decide to go back to public school. My husband and I agreed that if Gage doesn't adapt next school year we are definitely going to enroll him w/ CMASAS. Trust me when I say check it out. If only public schools could operate this way.
I think my main challenge is knowing when (and accepting) the fact that the "general classroom" is not a fit for him. Oh and the fact that I will basically be homeschooling him.....did I mention I have ADHD as well and when I think about the homeschooling I want to punch myself in the throat! LOL!!!!
Thanks for the information I will look into it. We are planning a trip to Orlando. You mentioned the disability pass for kids with ADHD, do you have to provide certain information or do you just go to guest services?
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