Parenting special needs kids

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Author: 
Siobhan Rowe
Source: 
Focus on Adoption magazine

Most parents shy away from adopting children with special needs. Here we meet parents who actually want to.

When I interviewed Carrie Hohnstein, mom of 11 children, I probed for quotes that might offer hints of the constant drama and stress that I assumed was an inevitable feature of her life.

There were slim pickings. Carrie just isn’t a dramatic person. She’s calm, thoughtful, and unflappable—qualities which are probably central to her success as a parent in a large family.

Carrie and her husband Gerald have three birth children (8, 14, and 18) and they have adopted eight children—all of whom have special needs including Fetal Alcohol Spectrum Disorder, Neonatal Abstinence Syndrome, Reactive Attachment Disorder, and one child has a chromosomal disorder. The couple are also hoping to bring home another child who has significant developmental delays, “We’re not afraid of any special need,” explains Carrie.“In fact, we’d prefer to adopt children with special needs than those kids who have lots of interest from other prospective families.”

Carrie explains that when they received the proposal for their daughter with a chromosomal disorder, they did think twice. Their concern was that the little girl might not be able to keep up with the active lifestyle of the rest of the family. In the end, the couple decided that even if that was the case, they would make any adjustments necessary. It turned out none of that was necessary—Jenna keeps up just fine.

Meeting expectations

One of the reasons Carrie and Gerald are so committed to adopting children with special needs is because they see the difference having a family makes. Carrie explains: “All the kids are thriving beyond expectations. All we expect of them is that they try their best. As parents, we work on modified expectations.” 

That doesn’t mean that her children don’t make her proud. Carrie recalls the time her 10-year-old son, Austin, gave her and Gerald a booklet he’d made by himself without any prompting. “In the booklet, he said that he loved us, he loved being in our family, and he loved his brothers and sisters,” Carrie fondly recalls.

Carrie and Gerald’s expectations of emotional attachment are also relaxed. Carrie explains that it took one of their sons, who was 12 when he joined the family, three summers before he could bring himself to call Carrie, Mom. He still calls Gerald by his first name but, notes Carrie, when he introduces Gerald to his friends he says, “This is my dad.” Carrie says that she and Gerald also realize that falling in love is an ongoing process and that it takes time. “What is important is that the whole family unit builds trust and respect. Love can follow,” she explains. Carrie does, however, insist that in order to adopt children with special needs you absolutely must love children and that being a parent should give you immense joy.

The other qualities that Carrie thinks are required to raise such a family are patience, a willingness to educate yourself about your children’s different needs, a good sense of humour, and the ability to establish a well-structured family routine.

Carrie is a stay-at-home mom, and she and Gerald have a large property which gives the kids plenty of room to spread out, run off steam, and enjoy the outdoors. Gerald has a workshop and the kids often help him out with his construction projects and build their own go-karts.

Carrie feels well supported by the Ministry of Children and Family Development (MCFD) in terms of accessing the services that the children need. When the kids need extra services relating to their particular needs, the help is available.

Support deficit

Marlie Dyson and her husband Joel (names have been changed) adopted three children with special needs all under ten years old. They have felt far less supported. Marlie describes the process of obtaining Post Adoption Assistance (PAA) maintenance payments and support services for her kids as “gruelling.” She says that their social worker didn’t explain to them before they adopted their children that PAA might be available. She actually heard about PAA (only available for families who adopt via the MCFD) from her local infant development office. Once she discovered that they could qualify, the process of applying for it was exasperating and draining. Marlie says that she was told that PAA is a “privilege, not a right.“ In fact, PAA is neither. The best way to describe it is that it’s a program that can be applied for. 

Jennifer Hillman, AFABC Adoption Support Coordinator for the Fraser region, sympathizes with Marlie’s struggle with PAA. “It can be hard to navigate the process” she confirms. “Families have to reapply every two years and the paperwork is hard. The ease of the process can depend on your family circumstances, on which social worker you have, and in which MCFD region you live—the system is not always administered in a uniform way across the province.” She also notes that processing PAA applications (which can involve complex form filling and financial calculations) and dealing with requests for special services from families, can be extremely time consuming and complex for hard-pressed social workers.

Marlie and Joel’s children need significant help from speech language pathologists, physiotherapists, occupational therapists and a host of other services. Obtaining help with the high costs involved in supporting her children is tremendously time consuming and frustrating for Marlie. She works at night so that she can stay at home during the day with her kids and keep up with all the phone calls and paperwork.

Marlie loves her kids and is determined to help them reach their full potential; however, she feels that people considering adopting children with special needs absolutely have to be prepared to advocate for their kids and to learn not to accept “No” for an answer. “If you are considering adopting a child with profound special needs, you either need lots of money, or lots of support. Having to make a choice between being broke or trying to help my kids become as functional and successful as possible is my biggest challenge,” says Marlie. If she is unable to obtain assistance from the MCFD for services for her kids, she has to find $100 - $150 an hour for private physiotherapy, occupational therapy, and other support services. “You also need to realize that if you adopt such a child from the Ministry, your relationship with the MCFD never ends,” she emphasises.

Marlie strongly advises families to learn about what support is available and to know who to go to if it’s not forthcoming. She thinks it’s ironic that she is exactly the sort of advocate parent that children with special needs should have, yet she’s found it so hard to get help. Marlie gets no pleasure from explaining that she suspects that when the MCFD staff see her coming they probably think, “Oh, no. What does she need now?”

Surviving and thriving

Obtaining post-adoption support since she adopted two children from the MCFD hasn’t been a problem for Deb Brown. “I have felt incredibly supported,” she says, “I have received all the services I have requested. Sometimes the first answer is “No,” but, if I ask again, it’s usually forthcoming.” She agrees with Marlie that parents who adopt children with special needs have to be prepared to advocate for their kids and that doing that can take up a huge amount of time and effort.”

Deb, also a foster mom, has adopted two children, Christian, aged six, and Elizabeth, age three, and she is in the process of adopting Jake, one of her foster children (name has been changed). All the children have special needs.

Christian was alcohol exposed in utero and has a rare birth defect in which the structure that connects the two hemispheres of the brain (the corpus callosum) is partially or completely absent. Though the effects of this can vary, amongst others, it can result in delays in attaining developmental milestones, difficulties with activities that require coordination, language and problem solving difficulties, and challenges with social interactions. Christian does have learning difficulties and ongoing behavioural issues.

Elizabeth had very little prenatal care, there were tremendous problems with her birth (it took seven minutes to bring her back to life once she was born) and Deb was told that she could have profound mental and physical disabilities. Deb recalls that at five months it was almost as if Elizabeth came alive and she started to catch up with her peers. Jake has been diagnosed with Global Developmental Delay. However, Deb reports that though he may be behind his peers, he is catching up.

It’s clear that Deb loves being a mom—she’s even considering adopting more children in the future. The fact that a child has a special need does not phase her—most of her working life she’s been involved with special needs kids, so she knows what to expect and how to parent them.

Self care helps everyone

That doesn’t mean Deb doesn’t find it hard. She copes by taking a weekend off each month so that she can regroup and refresh herself. She jokes that at first she would use her respite care service so that Christian could have a weekend away. Then she realized that she was the one that should enjoy the break.

One of Deb’s biggest challenges, shared by many parents of children with special needs, is dealing with the school system. She questions whether a system that focuses so much on academic achievement can provide children with special needs the sort of teaching experience or supports they really need.

Christian has a full-time classroom aide but he still hates school, partly because of problems with the other kids. “I got a note from his school the other day about his late attendance; he’s late because it’s a nightmare getting him to go in the first place because he just doesn’t fit into school.” Deb warns other parents considering adopting children with special needs to expect ongoing issues with schools.

Another thing that Deb finds tiring is having to defend Christian’s behaviour. “Having to defend him is far more exhausting than being with him,” she says. Most of her friends now are other parents of children with special needs. She also finds that, though they might not express it, other people often find such children annoying and eventually drift away. As a single mom, her biggest challenge is paying for babysitting whenever she needs to leave the kids, something that two-parent families usually find easier.

Despite these problems, Deb loves being a parent—a baby she was fostering has just moved on, and Deb’s complaining that the house seems a bit dull. Deb is considering moving out of the city to a smaller community where she can afford a bit of land where the kids can have more space to let off steam.

What it takes

As we have seen with these parents, people who adopt children with special needs, or who find that their children have special needs after adoption, need to be prepared to educate themselves about their child’s needs and the services that may be available. They also need to be able to ask for help and allow outside services into their home. Being able to develop a good working relationship with social service professionals is also very important.

It is also important that parents understand that the rewards of such parenting may be less obvious and harder to come by. Many children with special needs have difficult attachment behaviours, and parents are often “blamed” for their child’s behaviour. As we have seen from the parents in this story, though, children often exceed expectations—having a supportive, secure family is one of the factors that contributes to this.

Prospective parents who plan to enjoy an empty nest might, however, have to adjust such expectations if they adopt a child with special needs. Moreover, depending upon the level of needs of the child or children, working full-time could also be a challenge. In all the families interviewed here, one parent stays at home during the day.

Significantly, though, none of the parents complained about their kids—their biggest challenges are obtaining services and the attitudes of other people. As we have seen, two of the families look forward to adopting more children with special needs—surely a testament to the joys adopting such children can bring.

While the challenges cannot be minimized, children with special needs are, in many ways, no different from other children. They offer adoptive parents opportunities to share their lives, the satisfaction of watching their children change and grow, and the sense of purpose that comes with parenting.

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