Some important perspectives in working with parents include being able to gauge their: motivation, knowledge of the disabling condition, support systems whether social or financial and relationship with the child. Do not assume the worst of us. Expect the best and help us reach that expectation.

As the single parent of a special needs child who was adopted at age 12 I have been on the receiving end of services. I have been very active in support groups for parents. A major part of why I am in the counseling and education profession has to do with how my now adult son and I were treated throughout his school years. To other professionals who do not have special needs children, I would say – you don’t have a clue how hard it can be at times. Take any little issue you have with a so-called normal child, multiply it times a thousand and you would have had my life some years ago.  The other thing you need to know is that this is MY CHILD. No matter how hard it is, and how discouraged, mad, angry, sad etc. that I get, that will not change. I am committed to him and I love him. Even during the times I could not care for him at home, my heart never left him. Never question my love for my child. Be my encourager and my coach but not my judge.

I have been involved probably with thousands of parents. Here are some tips from myself and those other parents so perhaps you will be able to do your job better:

1. Don’t talk down to me or act like you could do a better job with my child. You have a commitment for 8 hours a day for perhaps a few months of his life. I have a 24/7 commitment for his lifetime. It is easy to play and even to push a child into uncomfortable limits and efforts when you don’t have to go home with him every day. You do not know the whole child. As the primary caregiver, (usually Mom), I am the one who sees everything. I feel bad enough that my child struggles to get through life. Don’t make me feel guilty or inadequate anymore than I already am.

2. Give me a break. I told you this caregiver thing is 24/7. I am usually exhausted but I try to “play nice” when I am out in public. When you see me, hopefully I’ve combed my hair and am well dressed. I am not “dumping” my kid at school so I can go out and party. My social life is almost nil. There are multiple errands to do and, by the way, I probably have a full time job myself. The really best break I could really use would be some totally unstructured time when I could have a whole 2 days for myself alone. A bubble bath without a child waiting outside the door. No running for emergencies. Doing the things I used to do for myself. If there is respite care available in my area, please hook me up!

    3.  Along the same line of “give me a break.” Please understand why I need

       a break is that I probably am under a great deal of stress. It’s a kind of  post traumatic stress syndrome like soldiers in combat except that war is never over. People, who are normal healthy people, act differently when they are under stress. If I don’t look “normal” to you, don’t over react. I probably haven’t been getting enough sleep, my appetite has been either way up or way down, I am constantly thinking about how I can best take care of my child’s needs, I have financial problems because of the medical bills, my boss is mad about the time off I had to take from work, my social life and relationships are in the disaster zone, I’ve developed high blood pressure and my kid tells me he hates me. How would you like to live like that??  Please be gentle with me and try not to add additional burdens on me. My time is valuable and I can’t attend 100 meetings. I don’t have extra money for optional services. I really need to hear from you that I am doing the best I can under the circumstances and that you will try to find help for me, including additional resources, money, and respite. You can help my stress level more than anyone else if you help me and support me.  Just because I look crazy sometimes doesn’t mean that I am.

4. It may not be my day. Motivation to keep going with a special child varies. Parent burn-out is common. This is one of the reasons there is a high prevalence of divorce in these families. New parents may be totally over-whelmed and just withdraw in shock. Other parents will throw themselves into the fray of seeking help for their child, but after the first 5 years or so, decide perhaps that it’s someone else’s turn. Please recognize that there is an image of “the dream child” for most parents. I remember the day when total reality hit for me. It was the big assembly for transitioning 8^th graders to go to the local high school. As they were telling all the parents about all the opportunities at the next school, I suddenly found myself quietly sniffling in the back of the room. I wished the special education teacher had not told me to come to the assembly. I left quickly. There were too many things being talked about that I knew were not options for my child. I had taken him home in an adoptive placement two years prior, but it took me that long to have it finally register. My child might never be like all the rest.  Help me handle those feelings when they come. Help me keep motivated and find the things my child can do. Help me help him find his place in the world.

5. Respect my professionalism as an advocate for my child. Even if this is a new child, by birth or adoption, remember that I am the case manager and the gate guard for services to this child. I may not have your education and experience but I am the #1 expert on this particular child.  I may not know every thing at first that you know, but I am listening and learning.  I will read more books and magazines, surf the internet, and talk with numerous experts in the field. You may be one of those experts and I will try to show respect to you as well.  But, I am the one who sees the big picture because I hopefully am there at every meeting. I may be a person with limited abilities myself but that doesn’t relieve me of my guardian role. If I can’t seem to understand the information or suggestions you are making, please work with me so I can get it. If I have education in the field where my child is receiving services, please accept me as a resource.  My experience may not be with as many children as you, but on this one unique child, I’m the one with the most experience.  If you think I need some coaching in a particular area, don’t be demeaning about it. Telling someone that they need “parenting skills training” is a slap in the face. Instead, help me learn about resources for my child including training, books, websites, and support groups. Here are some websites which are especially helpful:

      Parent Support Network:  http://www.gpsn.org/

      Council on Exceptional Children: http://www.cec.sped.org

            Learning Disabilities Association: http://www.ldonline.org

            The International Dyslexia Association: http://www.interdys.org

      Uniquely Gifted: http://www.uniquelygifted.org

6. Finally, here are voices from other parents. Follow the links to hear directly from them.

Enabling Our Children by Deborah Thorpe. "I hear it everyday. I belong to a parent support group for children with learning disabilities and ADHD, one of the largest Internet listserv groups for parent support for these disabilities. There seems to be a constant, reoccurring topic among our group: 'The teacher says I am enabling him to be the way he is' or 'The teacher says if we gave him more discipline he'd be fine.' Parents of children with invisible disabilities are constantly being blamed for their child's difficulties. We are easy targets."

Fighting Guilt by Charlotte Riggle.  "Misplaced parental guilt is a monster I know all too well. Seducing you with what might have been, it wastes your time, erodes your confidence, devours your energy, and distracts you from what is – which is the only thing you can do anything about."

My Mockingbird by Ruthie. "My son was reading Harper Lee's story To Kill a Mockingbird … I was struck by how this wonderful story's metaphor applies to twice-exceptional children."

Welcome to Holland by Emily Perl Kingsley.  "I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......"  Although written by the parent of a child with Down's Syndrome, it is applicable to all of us dealing with the emotional rollercoaster of parenting special-needs children.