Executive Director’s Note: Below is an article I wrote for the Manitoba Child Care Association newsletter in 2002, when I had been with LDA Manitoba for two years. It still reflects the phases in the parenting journey expressed to me by parents over the last 13 years, over the phone, in emails, in person, and in parenting classes* and workshops. Remember, raising a child with learning disabilities and/or ADHD is a challenging but rewarding experience.
*If you are interested in our parenting classes – please see our calendar for upcoming classes.
1. Wondering: When parents first notice that their child has difficulties with things that most kids don’t seem to have trouble with, they usually feel a mixture of protection and confusion. Parents naturally apply extra effort and assistance with their child. At the same time the child show signs of being different in positive ways – they have certain tendencies and abilities that are exceptional strengths. This is the wondering phase – seeing differences and not being able to interpret them.
2. Worrying: When children fall behind their friends in important ways they start to show frustration and they try very hard to keep up, often including inventing ways of masking the difference to achieve the same result, like memorizing books by ear, giving in to get along, or being extra assertive to control the pace of activities. Parents continue to apply extra effort and assistance with their child, sometimes holding back to see what the difference really is. They worry that the promise their child shows will not be realized because the differences and deficits put too many roadblocks on known paths to success and opportunity. When extra effort helps but doesn’t solve the problems, a nagging insecurity begins to take root.
3. Assessment: Sometimes initiated by the school, sometimes by the parents, assessment occurs when difficulty in keeping up or fitting in becomes very noticeable. The rule of thumb is the earlier the better. When they first get the assessment, parents may feel a sense of relief, as they finally have some answers, and can hopefully access resources.
4. Grieving: Includes, denial, anger, and bargaining. This is a phase most parents go through, perhaps most acutely after the child is first assessed, when fear of the unknown is greatest. It is often repeated, in a milder form, as milestones come up. Children also grieve their disability, and fear that they will forever be seen as different by teachers and classmates.
5. Advocating: for Remediation / Accommodation / Emphasizing Strengths: Parents begin consciously advocating for one of these kinds of help for their child: remediation, accommodation and strength-based programming. If parents don’t have any traces of the same learning disability and/or AD/HD, they may vigorously pursue remediation to try get their child caught up to their peers. If they have some of the same characteristics or if the child’s learning disability or AD/HD is clearly severe, they may pursue accommodation first or most vigorously, to make school and other activities less stressful and painful for their child. They may also emphasize strengths, because they strongly believe in their child’s unique abilities, and also to store up self esteem against the struggle with deficits.
Most parents eventually pursue all three avenues of assisting their children. All are important for the long-term success of the child. Parents learn to explain to their child the reason for, and goal of, each form of assistance. They also teach them to appreciate and acknowledge the effort being made by others on their behalf. The learn celebration of effort and small successes paves the way to bigger successes!
6. Fatigue: Many parents report they haven’t read a book in years that wasn’t related to their child’s disability. They spend much of their time researching, planning, monitoring, worrying, assessing, consulting professionals and other parents, advocating with the school, implementing remediation in programs at home and with specialists, plotting activities that will result in success and fun … not surprisingly, fatigue and burn-out often set in.
7. Acceptance: When all the championing, grieving, helping, struggle are put in perspective, and the parent fully understands their child can and must make their own way, with the normal supports any adult child expects, perhaps ramped up a bit in some areas.
8. Self-advocacy – Helping the child become self aware, and a self-advocate: This is an important step that takes considerable knowledge on the part of the parent. However when parents have been active advocates for their child, they have modeled advocacy to their child. Self-advocacy becomes a natural next step. It means stating needs, making clear requests, and negotiating with respect for the other’s position.
9. Normalizing: Sometimes early, if the family is familiar with the learning disability and/or AD/HD and successful with it, but usually well into the journey, and most often after meeting with other parents of learning-disabled children, things fall into perspective. The parents see their child’s differences as normal for someone with an LD and/or AD/HD and they are able to set reasonable expectations that guide and facilitate their child’s development.
10. Celebrating: After reasonable expectations are set, there is much to celebrate in children with learning disabilities and/or AD/HD, both in difficulties overcome and inherent potential realized. And really, this has been a part of each phase of the journey!
– by Marilyn MacKinnon, BSW,
Executive Director of the Learning Disabilities Association of Manitoba