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Princess_Lily
member
AW Moment!
Princess_Lily
member
DS just got accepted to the charter school here!
We were over the moon I think more so than our own college acceptances, lol.
We were concerned about the support structure there. However, after long consults among the family, DS will have whatever support he needs to succeed. Speech, OT, tutors...whatever, and we will be in consult with the school. I am also prepared to consider medication to regulate his activity & mood maybe only limited to school days?
On a side note, DS's metabolic condition is so rare (1 in 50,000) I can't find any support forums on parents dealing with the disorder. I found two stories through OAA, but its in a newsletter format, there are more stories of parents dealing with MMA. INSPIRE also has a forum style of stories but the posts close after 90days, and everyone is dealing with infants dx'd with it.
Mind if I stay here? I think I can still benefit from advice here. The condition causes developmental delays and hypotonia (muscle weakness, SPD & Speech delays) amongst other things. In addition, there are attention difficulties present, but we are unsure if its SPD related or ADHD. We have yet to receive an official report.
We were over the moon I think more so than our own college acceptances, lol.
We were concerned about the support structure there. However, after long consults among the family, DS will have whatever support he needs to succeed. Speech, OT, tutors...whatever, and we will be in consult with the school. I am also prepared to consider medication to regulate his activity & mood maybe only limited to school days?
On a side note, DS's metabolic condition is so rare (1 in 50,000) I can't find any support forums on parents dealing with the disorder. I found two stories through OAA, but its in a newsletter format, there are more stories of parents dealing with MMA. INSPIRE also has a forum style of stories but the posts close after 90days, and everyone is dealing with infants dx'd with it.
Mind if I stay here? I think I can still benefit from advice here. The condition causes developmental delays and hypotonia (muscle weakness, SPD & Speech delays) amongst other things. In addition, there are attention difficulties present, but we are unsure if its SPD related or ADHD. We have yet to receive an official report.
This discussion has been closed.
Re: AW Moment!
You are welcomed here and you must stay.
Are they running the panel on your DD as well?
They found it in DS's panel at birth, it is one if the 29 gentic disorders screened on all babies at birth since '07. As a precaution we are running an additional on DD (there was one done in the hospital, negative) at the genetics appt in two weeks.
Are you treating with diet? Are you seeing improvements?
No dietary restrictions currently. But if I make sure he stays hydrated and well fed he his mood improves. We used to use a daily suppliment but last year the geneticist wanted to pull it, to see how he has been doing without it.
What kind of charter is it?
Um, not sure actually. Its funded through the residents & boe. But the school comes very highly regarded locally, and there is a lottery system in place. I am not sure of services there...they do have an ESE program, and one of the neighbors children (who has a speech delay of some kind) goes there and she is quite happy.
When you say you talked among your family, does this mean you won't be accessing district services and paying OOP? Because he would still be entitled.
He is still covered as if he is in public? I assumed the coverage isnt the same. I am also unsure of the ESE dept and how they work.
The eval doctor says that the best educational support for DS would be ASD in the public schools. However, since there is a metabolic condition which may be causing the delays & difficulties, does the genetic condition superceed the other? I still think there is some inattentiveness...hes quite the busy bee.
We are in evaluations still, we have a retest to take on the 8th and I am still filling out the packet.
Monday morning (prior to receiving the acceptance email) I called the doctor to advise him of the 3MCC and its possible presentations in early childhood (hypotonia and/or developmental delays, etc)
So he had yet to do any research on the condition nor had I provided information packets on it up to that point. After discussing it with him he asked to get information from me and the geneticist.
Then the same day later that afternoon, the acceptance email came through. I called the Dr to tell him the good news and to also ask him what type of support structure would benefit DS because we had a deadline to respond to the letter, like a 48hr. response. Without gathering up all of his information, he just thought at that time an ASD support. Do you think this was a premature response to my question?
The next morning I sent the doctor (psychologist) everything which would help with the 3MCC information, in addition I got in touch with DS's geneticist to see if there was anything else.
The geneticist thought it was interesting that DS was showing symptoms as I had described. Although interested, she doesn't want to do any labs on him until she meets with us on April 2nd, we will then discuss supplements, dietary restrictions. We will also retest DD, a double checking if you will of the newborn screen, which was negative at birth.
I have to also add that when I was filling out "The Packet of Doom!" yesterday from 830- 12a, (going through old videos & pictures to track developmental milestones the doc was looking for) I took notice that DS was reaching all of them on time. This whole thing started when DS was 3yo and the very first school brought to our attention that he was defiant and not listening to direction well, I then spoke with pedi who just thought that he needed a speech eval, and due to the schools complaints, an OT eval.
Can an un-dx'd PPD in a mother mask her perception of her child and his/her development? In my head, I thought DS had been behind developmentally...but he never was. In fact he has always kept moving forward and acted very typical for his age.
I agree with the teachers that defiance at 2yo & inattentiveness has always been present. The defiance has improved greatly as he matures, now its more difficulty regulating emotions like anger/disappointment during a tantrum (rare 1-2x a month) with me, also if he is sick or not drinking & eating enough (3MCC related) I have also have noticed the hypotonia within the past year, when we joined a gymnastics class. There were children his age much more physically apt (if you will) than DS, as the kids were growing more into their physical capabilities, DS stayed behind, but still willing to follow his classmates...he's just weaker it seems. His OT picked up on that but couldn't determine where the weakness was coming from.
DS isn't in the school district yet, so he doesnt have an IEP/504 in place. However while he hasn't been evaluated by the district, he has been evaluated by a therapist and received treatment through a SLP & OT privatley. The psychological evaluation was completed privately too. Once the DX is complete we will be submitting it to FDLRS, hopefully by June MAX we will know everything.
I hate running to gather information and then being in a holding pattern.