So helpless with my five years old

[BusynMember]

Makes no sense. I am in a group of people whose kids all have SOME form of autism spectrum, from very high functioning to very low functioning. Some kids are ten and still barely able to talk or be understood. They got diagnosed before they could speak and they all had neuropsychologist evaluations. Their children's apraxia was part of the reason they got the diagnosis. Do you have any university hospitals nearby? in my opinion they have the cutting edge/best neuropsychologists in the country.
My son was 11 before we could get the Autism Spectrum Disorders (ASD) diagnosis. They kept talking around it, but never at him (this, in spite of the fact that some other parents asked me if he was on the spectrum because he would not interact much with kids he didn't know...they would come to ME with the question). Hub and I knew it. When we first got him, we looked at him running around like a maniac, then tantruming, then rocking back and forth with his thumb in his mouth to go to sleep and we looked at each other and said, "Autism." It was higher functioning. He could say words, would pull us around by the hand to get us to do what he likes, and was bright. But WE knew.

Why didn't all these highly paid professionals? Instead, we suffered through medication trials for ADHD (they made him mean and aggressive) and then a terrible misdiagnosis of childhood bipolar. Can't tell you how many horrible medications he was put on for this disorder that he didn't even have.

It was at a large get together for kids with early onset bipolar that parents came up to me to ask if he had a form of autism because in the large group that he didn't know...I am not sure what made them ask, but they did. I finally found out what a neuropsychologist is and took him for a ten hour assessment (without mentioning autism to the neuropsychologist) and FINALLY got the diagnosis. It is obviously correct.

Until we got the diagnosis, we just pushed and pushed for his IEP and he always had one...for speech (until he no longer needed that), Occupational Therapist (OT) and social skills. Keep on fighting. Get an advocate. Don't quit. It REALLY helped my child...he is a happy young man today, about 80% independent. Yes, we wish it was 100%, but maybe it will be someday. It is good enough for us.

 

[SRL]

Asperger's often flies under the radar until later ages. I know it makes it really hard for parents not having a definitive answer. As long as you have enough of a reasonable diagnosis to leverage for appropriate school services at this point--and Childhood Apraxia definitely falls in that category--I might not worry so much about the exact umbrella diagnosis right now and instead concentrate more on the specific problem issues. Whether you're looking at Aspergers or Apraxia probably wouldn't make too much difference in services at this stage--both still would necessitate a specialized setting and/or regular classroom support, speech, Occupational Therapist (OT), and social skills training.

It's really important that the district take the whole child into consideration, and not just what happens inside the four walls of the building during school hours. If everything broke loose after their pulling him out of resource, then that should be a big clue that schooling is now a major stress due to removal of those supports. It may take additional testing and outside professional recommendations to make that happen. If the district is still resistant, the doctor can leverage through a written letter or phone call. Another option for you is to bring in an educational advocate, who is someone who either volunteers or is paid to go into the IEP meeting to make sure your child's needs are met. It needs to be someone who knows special education law and knows what the district and the area has to offer, and can be quite effective. If the district isn't providing what is needed then please don't hesitate to take these steps.

One suggestion--if you do any further assessments, don't sign to authorize the specialists to release reports to the school district. Get a copy and read through it first, then if you agree with the contents, deliver copies to the school. You're paying for those evaluations, you have a right to see them and make sure they're correct and will be helpful before they land at school.

 

[Crystal72]

Yes thanks for the pointer. As a mother going thru all these with the first son seems to be able to pick up signs when the little one started showing them.The school district is not being fair about this. When my older boy was diagnosed with aspirer. They even didn't want to acknowledge the report. The psychiatrist has to call in to ask what is their problem. And my older oy was only given 504, as per the principal, she says reluctantly. I reported to school district superintendent when the school refused to give services but suspend my boy for imapproprate language, I reported to th school district but the superintendent s backing the school up telling me that IEP is for kids that has life threatening disability... GOSHA I must looked stupid to them. During that point, my younger son had IEP and he didn't have any life threatening issue!!! Then my asperger son attempted suicide, the school suddenly became soooooo HELPFUL. calling to GUVE SUPPORT but after my son resumed school, they still denied IEP for him cos he is a distinction student. THEN STOP CALLING ME ABOUT HIS BEHAVIOR!I know asperger flies under the radar that was why my older boy doesn't get the diagnoses till 9. If an educational advocate couldn't help, I m going straight to senator

 

[Crystal72]

HiI finally got the neuropsychological/ educational report back last week.My 5 years old is confirmed with pervasive developmental disorder, ADHD, apraxia.sleep disorderNow we are looking into trying out medication. He was on adderall when he was 3 and developed tics. He was on strattera or 2 weeks ad we stopped cos it doesn't work.Psychologist suggested intuniv but out insurance doesn't pay for that. Can you share with me the medications and side effect your little one have going through medications?

 

[TeDo]

difficult child was put on Adderall when he was 3. Big nono, can't have stims. He's been on Strattera since he was 6 and does wonderfully. It took a couple months to get the dosage right and to see a difference but it was worth it in our case.

 

[Liahona]

I contacted NAMI (National Association for Mental Illness) and someone from their group came to difficult child 1's IEP meeting. Their should be parent advocacy groups for your state as well. The school is lying to you and you need someone to help you with the IEP. Posting on the Sp Ed 101 forum would be good, but it won't be enough. I was a sp ed teacher. I know the law. I've been to hundreds IEPs. BUT when I was on the other side of the table I needed help.

Good luck, my heart goes out to you and both your boys.

 

[Crystal72]

I m so exhausted. I understand the saying that 80% of family with 1 Autism Spectrum Disorders (ASD) child ended in divorce and I have 2.My therapist was so optimistic telling me that our governor recently signed the autism bill but the bill is to make sure insurance covers autism, not obligate the school to provide services.The child is constantly swearing and cussing. W couldn't go anywhere without him spitting and cussing out of no apparent reason.Others gets a good morning from their child and a good night. We are getting , I hate you, I don't like you, I want to kill you all, you Fu*k. These are all what we are hearing everyday home or public. I not know how long I can hold on to this

 

[Crystal72]

Thanks for the info. I found our local NAMI I just not understand my both boys has diagnoses from diagnosis but totally turned down by schools!

 

[TeDo]

You can also see if there is a PACER center near you. They have advocates. Ours was awesome! Another option is to call you state Department of Education. They might also have some places for you to call. Good Luck and many {{{{(((HUGS)))}}}}

 

[Crystal72]

Department of school , it was the asst superintendent that told me IEP is for kids with life threatening disability when they suspended my 11 years old asperger son for inappropriate speech. She wouldn't listen to me and took the principal side.

 

[keista]

Department of school , it was the asst superintendent that told me IEP is for kids with life threatening disability when they suspended my 11 years old asperger son for inappropriate speech. She wouldn't listen to me and took the principal side.

Well, they LIED to you. "life threatening?" No. It doesn't even have to be a life long disability. Sounds like you REALLY need and advocate. Check with all your son's doctors, see if there is a support group in your area.

 

[Crystal72]

I know they lied to me. Cos during that time, my 5 years old has IEP for apraxia and definitely he doesn't have life threatening issue.I m sure they are going to deny what they said to me. They are like conspiracy cos we are just barely 4 years in the country. The past almost 4 years, I went through all corners and corners but always bounces back to ground zero. It doesn't seem to have law overwriting the school department. How can Katie Beckett feels my son is not in dAnger if he had already one episode of attempting suicide and was hospitalized for 3 week racking up 21,000 hospitalization bill cos the only psychiatrist hospital here is out of network?

 

[Crystal72]

I just came back from the psychiatrist appointment with my 5 years old.I m so lost here. He says that every time he sees me, I will only talk about how bad they are. How problematic they are. He wants me to remember they are my sons. I don't get it. It's not as if I go there to make up everything ... If they are behaving like normal child their age, why do I need to go psychiatrist ?Tell me what I did wrong...

 

[keista]

I just came back from the psychiatrist appointment with my 5 years old.I m so lost here. He says that every time he sees me, I will only talk about how bad they are. How problematic they are. He wants me to remember they are my sons. I don't get it. It's not as if I go there to make up everything ... If they are behaving like normal child their age, why do I need to go psychiatrist ?Tell me what I did wrong...

in my opinion, NOTHING. You are right! You go to the psychiatrist to get help with the PROBLEMS. The good things are not PROBLEMS. My psychiatrist does things a bit different. I go to her to discuss MEDICINE and SYMPTOMS and we only have 15 minutes, and she insists on dispensing therapy instead. UHG!

It might be time to consider finding a different psychiatrist.

 

[Crystal72]

It's about the same. He was saying what do I think he needs medication for. I say as he is so far behind, I would like him to be able to sit down to focus on something and not waking up at 4am and runs around till 9pm. He says he can't just prescript medication by my words, he needs to hear from the school and not daycare. I just not get it, does how I feel not important at all? I have two Autism Spectrum Disorders (ASD) boys, but I only have one me, against school, insurance, doctors,.....etc. There are times I feel I can only breathe again when I die. If I m the kind that wanted the easy way out by drugging the kid. I wouldn't wait till now.

 

[InsaneCdn]

You need a new doctor. Someone who can sit down and look at the whole picture.
And no, they do not need to wait until this kid goes to school. Daycare counts too. As does any other formalized setting - where those in control have training in handling kids and/or years of experience doing so... even an experienced young-kid music-group teacher knows when a kid is behaving "normal" and "not". And their opinions count, too.

Yes, it does help to have more than just your own observations.
It also helps to have those observations documented (for a sample format, see Parent Report under Site Resources).

So I'd suggest... looking for a new doctor ASAP - psychiatrist, therapist, pediatrician, neuropsychologist, anything where you can get the person to really listen and see the current picture... and from there they can send you wherever you need to go to get help. And while you're waiting for that, DOCUMENT.

{{hugs}}

 

[Crystal72]

The psychologist understands. She says with those questionnaire, it's unlikely I m making things up cos it has to be very consistence. She even explained to me why my 5 years old would not be diagnosed with asperger like his 11 years old brother , she showed me the two keys of differences. It's like I rarely talk but she understands, like she is living in my house.The daycare is basically a learning centre for 3-5 years old. My son was attending preschool there too and goes to preschool in the afternoon in the regular school. Due to his apraxia he needs more work and more structure. They submitted their observation too so it's not base on my words. School wise, they instead my son is an angel. They removed his 20mins twice a week speech therapist even the speech teacher agrees he is way behind others. The class teacher dumped him to his 11 years old asperger brother but denied about that when I confronted them.Who can I trust here? I don't know anymore by the way I can't find the parent report link at the site resources

 

[Crystal72]

Sorry I found the site nowIt's the same document setting I filled out every time. Other than that I noted down episode of outburst, discipline method used and duration require to calm down.

 

[keista]

Sounds like you have a good psychologist, and a not so good psychiatrist. There are psychiatrists out there that REFUSE to medicate very young children. You might have that kind. Need to find another.

 

[Crystal72]

When my son was 3 years old. I took him to his first psychiatrist. Within 5 mins of conversation he prescribed him adderall saying he is ADHD.... I actually have him adderall for a few days and stopped when he developed tics. And when I went back to him,another few mins of conversation got a slip for strattera....I didn't give it to him cos if you couldn't onvince me as the mother, You don't pump medication in my child. So I went thru everything day by day...on top with an asperger son.Now I have a name to his behavior..but psychiatrist think it's my mental health that is losing it...god help me here..In which earth does a mother love seeing their child live in misery from action they themselves doesn't want or understand!!!!