I recently attended a training conference on "High Functioning Autism" and the presenter, Timothy Kowalski, MA, CCC-SLP, who specializes in treating individuals on the ASD spectrum described a common reaction parents have when given the news of their child's ASD diagnosis. I'm paraphrasing him, but he said something to the effect of, "The moment parents hear the clinician tell them their child has autism, they don't hear anything else discussed in that meeting. At that point the parent is freaking out thinking that their child is 'Rain Man'." The other parents in the training and I chuckled and nodded our heads because we remembered that moment. Tim Kowalski was a fantastic presenter and offered invaluable feedback. Needless to say, I bought all 4 of his books that day!
Clinicians- The assessment team can be incredibly professional, informative, thorough, empathetic, and kind, but the parent (even the toughest Momma Bears) cannot predict how they will feel and/or react when the diagnosis is said aloud in the ARD. It's a shock, a sting that only parents know. See my post about "Stages of Diagnosis" for more commentary and information about common reactions parents may experience. My clinician friend, Monica, shared a great comment on a previous post, "We (I) make sure to review two strengths for every weakness I state. I make sure to tell the parent that their child is still the same child but just needs supports and interventions. I make sure to tell them that future potential cannot be determined. We also tell them that this does not mean their child will not learn. We have kleenex boxes ready and we offer them breaks."
Clinicians- this is what I needed as a parent in my first ARD
1. Positives with the negatives. The parents know the child better than you. If you present only negatives, you may discourage the parent more than you realize. I understand the importance of being honest and realistic with parents about diagnoses and goals, but let the parents know that their child is awesome too.
2. Reminders that although the future is uncertain, it is certainly not bleak with a great treatment team like yourselves in our child's corner. Tell the parent that they can help their child too and promise to teach them ways they can help (then do that).
3. Kleenexes and bathroom breaks for goodness sake!
4. An explanation that diagnosis means treatment. Tell the parents that this diagnosis is not necessarily a life time diagnosis and it isn't something that will inhibit their child's development. Instead- the diagnosis will allow treatment, potentially state funding for assistance with this treatment, reassessment of the diagnosis, and a plan for the child's future.
5. Make certain that the parent understands their child's diagnosis/diagnoses. Help them understand the range of severity of symptoms. Explain the autism spectrum to them in lay terms. "If you know one child with autism, you know one child with autism." I love that quotation. Autism is such an individualized disorder that parent needs to be told in more professional terms that their child is NOT Rain Man.
Parents- this is what you need to know from the clinical standpoint
1. Your child was evaluated because someone cares- You, the school, the teachers, etc. The evaluation is done to help the child. In order for your child to receive help- they will need documented proof they need help (aka a diagnosis).
2. The assessment team does not know your child like you do. Your child probably didn't exhibit all of their strengths during the assessment process. A stranger is asking them to do strange things after all... Please don't feel defeated when hearing the identified challenges. Your child is awesome! You know that and you see it- a diagnosis does not take away from the great things you know about and see everyday
3. Parents have the right to disagree. You know your child best. You care about your child the most. But I urge you to pause before making any hasty decisions about denying help or refusing to sign anything. ARDs are intense. You will need some time to think things over. Take notes during the ARD. Ask questions during the ARD. Express your opinion and concerns during the ARD. If you aren't comfortable with the recommendations and don't know what to do about it, ask for some time to think about it. Better yet, try to get information before the ARD so you can prepare yourself for the emotions you'll be feeling and the questions/concerns you'll have.
4. Request a pre-ARD meeting with whoever you think you'll need more information from. You were likely a part of the assessment process. If the LSSP interviewed you, ask to have a brief meeting addressing his/her clinical findings. Even if they have not completed their report, they should be willing to explain their findings and diagnoses.
Check out Mr. Tim's website: http://www.socialpragmatics.com/
Clinicians- The assessment team can be incredibly professional, informative, thorough, empathetic, and kind, but the parent (even the toughest Momma Bears) cannot predict how they will feel and/or react when the diagnosis is said aloud in the ARD. It's a shock, a sting that only parents know. See my post about "Stages of Diagnosis" for more commentary and information about common reactions parents may experience. My clinician friend, Monica, shared a great comment on a previous post, "We (I) make sure to review two strengths for every weakness I state. I make sure to tell the parent that their child is still the same child but just needs supports and interventions. I make sure to tell them that future potential cannot be determined. We also tell them that this does not mean their child will not learn. We have kleenex boxes ready and we offer them breaks."
Clinicians- this is what I needed as a parent in my first ARD
1. Positives with the negatives. The parents know the child better than you. If you present only negatives, you may discourage the parent more than you realize. I understand the importance of being honest and realistic with parents about diagnoses and goals, but let the parents know that their child is awesome too.
2. Reminders that although the future is uncertain, it is certainly not bleak with a great treatment team like yourselves in our child's corner. Tell the parent that they can help their child too and promise to teach them ways they can help (then do that).
3. Kleenexes and bathroom breaks for goodness sake!
4. An explanation that diagnosis means treatment. Tell the parents that this diagnosis is not necessarily a life time diagnosis and it isn't something that will inhibit their child's development. Instead- the diagnosis will allow treatment, potentially state funding for assistance with this treatment, reassessment of the diagnosis, and a plan for the child's future.
5. Make certain that the parent understands their child's diagnosis/diagnoses. Help them understand the range of severity of symptoms. Explain the autism spectrum to them in lay terms. "If you know one child with autism, you know one child with autism." I love that quotation. Autism is such an individualized disorder that parent needs to be told in more professional terms that their child is NOT Rain Man.
Parents- this is what you need to know from the clinical standpoint
1. Your child was evaluated because someone cares- You, the school, the teachers, etc. The evaluation is done to help the child. In order for your child to receive help- they will need documented proof they need help (aka a diagnosis).
2. The assessment team does not know your child like you do. Your child probably didn't exhibit all of their strengths during the assessment process. A stranger is asking them to do strange things after all... Please don't feel defeated when hearing the identified challenges. Your child is awesome! You know that and you see it- a diagnosis does not take away from the great things you know about and see everyday
3. Parents have the right to disagree. You know your child best. You care about your child the most. But I urge you to pause before making any hasty decisions about denying help or refusing to sign anything. ARDs are intense. You will need some time to think things over. Take notes during the ARD. Ask questions during the ARD. Express your opinion and concerns during the ARD. If you aren't comfortable with the recommendations and don't know what to do about it, ask for some time to think about it. Better yet, try to get information before the ARD so you can prepare yourself for the emotions you'll be feeling and the questions/concerns you'll have.
4. Request a pre-ARD meeting with whoever you think you'll need more information from. You were likely a part of the assessment process. If the LSSP interviewed you, ask to have a brief meeting addressing his/her clinical findings. Even if they have not completed their report, they should be willing to explain their findings and diagnoses.
5. Most importantly- Seek comfort, confidence, and peace from God. Know that He is in charge. God is sovereign and has a perfect plan for all of His children (including you and your family). Feeling anxious or worried? Check out Philippians 4:6-7 and 1 Peter 5:6-7. These are my favorite scriptures about worry and what God desires us to do about our stress and worry. Pray for your child- that God will let their strengths shine and give them courage and confidence to work on the challenges they may have. Pray for yourself and your spouse/partner parent- that God will help you be the parent He desires you to be for your child and that your child needs you to be. Pray for your assessment and treatment team- that they may recognize your child's true needs and have the wisdom and patience to implement treatment to the best of their ability. Pray for your child's teachers- that they will have the love and patience to help your child achieve their learning goals and grow in their abilities. And pray for those who don't understand your child and other children with autism- that God will fill you with His love and wisdom to teach others to be accepting and understanding of differences in your child and other children.
No comments:
Post a Comment